Your Stories

Who and how has SBC affected you?

My late mum had secondary breast cancer (HER-2). My mum couldn’t get an appointment with a female doctor during the pandemic and felt uncomfortable seeing a male. Each time she tried to get an appointment with a female GP, this was not possible and it was not followed up by the practice. My mum was understandably scared and some time later suffered a stroke. Whilst in hospital, she mentioned the lump and upon investigating they confirmed it was breast cancer. Originally we were given information on primary but very quickly it was confirmed to be secondary. It spread to my mum’s rib and later her brain which we found out on my 30th birthday after she suffered a seizure which the hospital didn’t believe (and wanted to discharge her until the last minute where they witnessed a second seizure and sent for more tests. I was my mum’s carer- I always lived with my mum until she passed and I took her to hospital appointments, a&e trips (usually taking place on a weekend where we would be waiting sometimes over 24 hours for a suitable bed/room) and helping my mum take her medications daily. My mum bravely battled for nearly 2 years and sadly passed in April 2023. I miss her every single second. She was the most amazing, kind, strong, wonderful parent I could have ever wished for.

What additional support do you need?

Professionals need to make sure they have details before they confirm if it is primary or secondary- it was extremely distressing for us to be told so quickly that it’s actually secondary and it could have been avoided. There needs to be more support specifically around secondary breast cancer both for families and patients. A&E need to be aware of the risks to patients because the medical cards provided seem to not be sufficient with people such as my mum, being left without vital signs e.g. temperature being taken for hours, even when there is a risk of neutropenic sepsis, or being left in a room with lots of other unwell people where there is added risk, being left in a&e for over 24 hours etc. There needs to be more support for carers and families- especially people who fall through a gap and need bereavement support or general support groups (you’re either too young, too old or are assumed that it’s a spouse who has passed!). There needs to be more awareness of the signs of secondary cancer.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

My life is completely different, it’s based around medical appointments, taking medication, making sure I’m resting well.
I had to give up my career. I can’t exercise the same way. I plan ahead a lot more for going out even to the shops, where will I get parked, is it far, what if I get tired. These are the daily questions in my mind.

What advice would you give to someone newly diagnosed?

Don’t let it become you. Don’t make it your personality. You were you before this disease so why should that stop and why should you become “cancer”
Don’t get bogged down in it, don’t wear the badges, don’t do all the cancer things you feel you should be doing. Just do you.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It has impacted on every part of my life, but sadly also on my family and friends. I was medically retired from work, then I lost my driving licence after tumours were found in my brain. I lost my independence, not at first it was a gradual feeling then I woke up one day thinking I was so dependent on my family. I had to have metal rods inserted into my femur to allow me to weight bear as the cancer had also spread into my bones before my diagnosis. So as a result my mobility was not great. I then suffered an infection twice and unfortunately the bacteria had already settled on the metal work so that meant daily antibiotics. I have so much much medication in silly little packets I can’t even open so my husband has to help. I have so many appointments and scans at all times and my, husband, dad and mum take me and help me bring up my 6 year old girl. Life goes on. I have a daughter, a husband, dog and loving family. I dread to think what would have happened if I didn’t have such a good support network of family and friends. As the years have went on I feel like sleepy from Snow White.
I am thankful for every day I wake up, every Christmas and every birthday. It’s made me appreciate the small things.

What advice would you give to someone newly diagnosed?

Listen to your body and self advocate. My cancer symptoms were showing from 2019/2020 but because I had rheumatoid arthritis everything was attributed to that. The lump I found in 2021 was a secondary lump but a larger one hiding under muscle was the primary. I knew something was wrong and after feeling the lump I read up on secondary breast cancer and I just knew that was what I had, every symptom but the lump was there. It is your body don’t be polite and mild mannered like I was , be brave and do not take no for an answer. If I could go back in time with all the info I have now. My life would probably be very different. Knowledge is power and keep on listening to your body.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

It has affected every aspect of my life, from how I feel physically and mentally facing my daily reality of ongoing treatment, living with a suppressed immune system. To having the energy to be mum, hold down a full time job and get enough rest. I could write a list as long as my arm about how my diagnosis has affected me, when I see people in the community no longer with us and it reminds me my time will be shorter than I had hoped. But at that same time it has also given me a new lens of viewing life, enjoying the little moments, no focusing on what we have but the time we have together. Making memories with my babies and leaving a lasting legacy for my family. The diagnosis is shit! The community is the most supportive and caring that I could ever had imagined. There’s always someone there for you. Be that MacMillan, someone on Instagram or in a Facebook forum.

What advice would you give to someone newly diagnosed?

Take it one day at a time. Don’t look to far ahead. Enjoy the now. When I was first diagnosed I felt like I had been given a death sentence, but with time I learnt that education is how we learn to live well with the time we have. Done be alone, reach out to the community as there is always someone to help and support you through your journey.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have taken ill health retirement from my job as a nurse due to the side effects of treatment.
I use to be a regular runner but I’ve had to stop that because of the impact on my spine where I have bone metastasis.
Having a SBC diagnosis affects me, my family and my friends every day. It affects me physically and mentally. Having SBC is something you can’t escape from. It is there 24/7. It doesn’t mean you can’t laugh, enjoy life and have fun but it doesn’t take much to bring you back to reality.
I spend a lot of my time doing “cancer admin” (attending appointments etc) as well as having to self advocate.
Since being diagnosed with SBC I have found a new group of friends both in person and online which has proved to be invaluable to me in terms of support and understanding.
Having an incurable disease does make you view things differently. You say yes to things you might not have done before and don’t put things off as much

What advice would you give to someone newly diagnosed?

Ask questions and don’t be afraid to keep asking if you don’t understand the answers you are being given.
Advocate for yourself as no-one else will do it for you. Try and find support groups and people in a similar situation as they will understand what you are going through in a way others can’t and will act as an invaluable resource and support.
Find your tribe!!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The medication side effects affect me daily. Tiredness, aching limbs, total exhaustion of my body

What advice would you give to someone newly diagnosed?

Take each day as it comes (and be grateful for each day - live it). But at the same time listen to your body and rest

Who and how has SBC affected you?

My Mum had Secondary breast cancer, she passed away February 2021.

What additional support do you need?

My saying through out my Mum's battle was "Nobody Tells you this" I felt we had to guess our way through Mum's battle, hoping we were doing the best for her.

Who and how has SBC affected you?

The person who has SBC is my sister. She stays with me when she is receiving her treatment, which is every 3 weeks. My sister is a remarkable woman, I may be biased, but I find her an inspiration. My feelings for her have grown as time passes. We both are quite pragmatic, and yes, we've a slightly dark sense of humour. A whole new way of life has been opened up, not just for her, but also us. My greatest fear, is her being in pain.

What additional support do you need?

I think the general public needs to know what SBC is all about. From primary diagnosis, unless you have done your homework, the patient don't know the signs of secondary. GPs need to know too, the links are plain to see, however the jigsaw pieces are missed.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Hi I’m Kat, I was diagnosed with primary breast cancer in April 2019, when I was 9 months pregnant with my beautiful daughter Corah. At the time I also had a 3 year old son, Frankie (who is now 8).

It all felt surreal, the words ‘get the baby out as quick as possible as you need full body scans’ will always stick in my memory. The first year of Corah’s life I was going through chemo, surgeries, radiotherapy. It all seems so long ago…we moved on with life. When Corah turned 1 we noticed she wasn’t developing as expected, she was diagnosed with autism by the time she was 3. Although it was scary going into the unknown, I had many sleepless tearful nights worrying about her future, but in a way this helped shift my focus from cancer to ensuring she had all the support in place that was available to her. I went on a mission to get her the support she needed. She has attended a special needs school since she was 3 and she is doing well. Our bond is just magic, she fills my heart with so much love without saying a single word.

Things have been tough but I thought cancer was in my rear view. A recent MRI has unfortunately picked up secondary cancer in my liver and bones, I feel like I’ve been blind sided. Although I was very aware the cancer could recur I thought I was home free. It’s been nearly 5 years since my initial diagnosis. My oncologist was as surprised as me. I was that sure things were fine I went to the appointment on my own. To be told you are terminally Ill at 35 years old, I can’t even explain the feelings I had that day. I was a blubbering mess. First thing I said was my children need me, I need to be here as long as possible.

I started chemo last week as first line treatment and it’s hit me hard, there are ripple effects through the family as we have two young children (one with additional needs) it is tough on everyone.

I must stay positive and hope that one day soon, in my life time we have a break through trial and I get to see my children grow into the beautiful adults the are destined to be.

I do not want to be a statistic. I want to defy the odds. I want to live.

Kat

What advice would you give to someone newly diagnosed?

Things will move quick, but go at your own pace. You will find your own way of coming to terms with it. This is all new to me but compared to even a month ago I have come along way with my emotions and I am able to talk about my diagnosis openly. No matter what the odds say there is always hope.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I’ve had to retire from work on ill health grounds. My family and friends have to be flexible for plans to change due to appointments dropping in or I’m too tired/in pain.
I’m constantly tired and dropping off to sleep everywhere, so sick of taking so many tablets for the SBC plus side effects.
It’s mentally draining dealing with it constantly.
We now have to have a cleaner because I can’t manage the housework.
Whatever plans I make I have to factor in rest days.

What advice would you give to someone newly diagnosed?

Let the news sink in and get as much information as you can. There is life after diagnosis and utilise all support available. It’s possible to live with SBC not wait to die from it.

Time for diagnosis:

Mine was found by accident on a CT of my colon after a failed colonoscopy because a miraculous piece of parsnip. I had complained about my hip.to my gp for years.. A lesion was seen on my hip. I was denovo.

How does secondary breast cancer affect your life?

How doesn't it? It's now my life. I'm a lone mum to a 14 year old who has experienced an inordinate amount of loss. I'm not sure what the future holds but I'm trying to get back to some sort of normal. I've returned to work after initial treatment but the ongoing side effects make it tough, I feel the impact on my body. I am beginning to understand the enormity of "living with" secondary breast cancer. But its also given me a zest for life, an enormous appreciation for life and a hopeful and positive outlook. Of course there's also dark, terrifying times but I try hard to contain that, somehow compartmentalise the fear. Scanxiety is massive for me as i discovered that I'm quite claustrophobic which has been hard to imagine, never mind then worrying about results, what changes could be taking place in my body.
As someone with no family in the UK and a widowed mum I really know who my true friends are now and they have been wonderful. They know how difficult life was for me before my diagnosis. It just seems so surreal that I'm now dealing with more challenge. It has brought me closer to my family too who travelled to the UK to look after me after surgery and during chemo. That support means everything.

What advice would you give to someone newly diagnosed?

Try not to panic too much though it does feel like a stomach punch. Find some good forums/support with women with the same diagnosis. I wish I had found these sooner as l had so many questions, so many fears and I thought the worst. Don't believe google stats, they are well out of date! There are good treatments and there is hope.
Talk to your friends and family, lean on them. And good luck ❤️

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I think of SBC as a 'little cloud' sat above me everyday. Sometimes the cloud is dark and sometimes it is white but it's always there just like SBC. Diagnosed nearly 12 years ago, I have almost come to the end of available treatments and that is really scary. It affects your whole life. You live life in 3 month blocks between scans and there is constant scanxiety.

What advice would you give to someone newly diagnosed?

Don't Google. Get your information from reputable organisations such as Make 2nds Count. Try and join a local support group if there's one in your area.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I am lucky, although I have tumours in my spine and sternum, my treatment is working well. I have occasional pain in my pelvis, usually this is related to me overdoing things. I have treatment every 4 weeks at Ninewells hospital and meet with my consultant every 4 months (this has changed from 3 months which I take as a positive!). I try and live as well as I can.

What advice would you give to someone newly diagnosed?

There is hope. When I first found out my cancer had returned (after 18 years) I thought that my life was over. However after meeting with a consultant and breast care nurse with my husband and daughters we were given a treatment plan and encouraged to think positively. Do not google SBC!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Sbc has devastated my life as i was in such a good place .i remain positive and appreciate life so much more but i worry about the future and how much time i have and what will happen. I am often very tired physically and struggle to go out alone or make meals etc

What advice would you give to someone newly diagnosed?

Let yourself feel sad and allow time to process . With the right treatments there is hope and many people can live for years .try to remain positive but accept there are days whrn you feel upset or tired or just want to hide

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Mobility can’t do the things I love.
Continual round of scans, oncology appointments, bloods and treatments.
Hair loss.
Worry about future but staying optimistic.

What advice would you give to someone newly diagnosed?

Don’t Google.
Join support groups.
Be aware there’s multiple treatment lines now.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Pain, mobility reduced, unable to work at present, mental health.

What advice would you give to someone newly diagnosed?

Its a massive shock initially and you can feel hopeless however things do get better and you learn to live well with disease as best you can. Reach out for as much support as possible, it is good to connect with others going through the same thing and always have hope. Keep as active as you can.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Normal life has to be constantly re evaluated. Can no longer travel far from home and life revolves around more simple pleasures.

What advice would you give to someone newly diagnosed?

Just be yourself and enjoy just being in the moment. Find the best in simple pleasures and don’t over think or worry. Worry prevents you getting the best out of each day.

Time for diagnosis:

I was diagnosed in the Philippines initially saw my doctor in march 2021 but told i was too young to have cancer - diagnosed stage 4 in November 2021

How does secondary breast cancer affect your life?

It has affected my life massively, from my day to day activities, SBC has slowed me down a lot. But being here still actually humbles me knowing I get to meet amazing people regardless how dreadful the future maybe.

What advice would you give to someone newly diagnosed?

My greatest advise to someone newly diagnosed is whatever you are feeling at this very moment is valid, don’t let others tell you otherwise. One day this will be all in the past and there is so much life to live after this, and it will be worth it. Continue living your life not for anybody but for yourself.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Limits in what I am able to do with my life, I have stopped working and get tired easily which limits what I can do with my family.

What advice would you give to someone newly diagnosed?

You are still alive now try and grab what you can.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Have been managing symptoms and side effects since Dec 2016 until a spinal progression in March 2023. post spinal ops had a stroke which has left me with limits on mobility. Husband is now my carer. He will be 79 in April and had prostate cancer treatment 2022 -23.
I am 77. We strive to be independent. Our family and neighbours are supportive as are District nurses and our oncology teams, especially as we had a family suicide in January 2024. We used to be able to walk outdoors together, now we are restricted as to pushable locations etc. between us we have all the will in the world to stay positive and feel purposeful but this is so hard.

What advice would you give to someone newly diagnosed?

Don’t panic. Don’t listen to any timelines, make your own even if in months.
Accept help when needed. Find your ‘team’ friends, family, medical professionals. Eat and sleep as well as possible. Use the online groups if that is poss and find a group that may not be SBC related but provide another focus which you can handle.read reliable info about your treatment.

Time for diagnosis:

Was given naproxen and physio, not even a blood test, and I kept saying is this my breast cancer returning to my bones

How does secondary breast cancer affect your life?

I have recently had brain bleed and blood clot due to my treatment, I can’t fly for my work or holiday. Have had to take time off from work sick. My weeks are taken up with oncol appoints , scans, results, treatments, very difficult to hold down full time job, this causes financial worries and worry of being absence managed out of my role. I have little energy so find it difficult to keep on top of running a home and socialising. I constantly worry what will happen to my children , (19, 30, 31) and want to be able to leave them money when I’m no longer here.

What advice would you give to someone newly diagnosed?

Don’t despair , although there is no cure there are many treatment lines. You will have good days and bad days. Do as much as you can travel wise , holidays whilst you are able . Spend time with family and friends and make memories. Stay positive and don’t over commit, join groups like ‘make2ndscount’ these will help you to vent on bad days, hear positive treatment outcomes, and receive good advice from others on the same treatment plans.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Every day, every decision made! Fatigue is a killer, it impacts my life so much, it gets in the way of me trying to live as much as i can while i can.

What advice would you give to someone newly diagnosed?

Carry on living, try to put it to the back of your mind, hard I know! Enjoy the little things, they are whats importance. Self advocate constantly.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It effects everything, treatment side effects, the uncertainty of how long treatment will work for or if treatment will work at all, the uncertainty of the future, you cant make long term plans, telling my children about it and how it effects them and their lives, how ut effects my husband, how it effects my work life and ability to progresss in my job.
Not being able to see scan results on nhs portal is hard, especially when you want to be informed of all aspects of treatment and results.

What advice would you give to someone newly diagnosed?

Try not to panic, and dont use google if possible, there is a lot of false information out there.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I try not to let it but it is always there in my mind. I live a healthy lifestyle, work full time and I have two young boys, so I like to keep busy and keep distracted from over thinking..

What advice would you give to someone newly diagnosed?

Take one step at a time, you have to feel your way through this, grieve for the life you’ve lost and work through to acceptance. It takes time but there is so much support out there so utalise every single channel you can. You will soon find a community of like minded people who will become your support network.
Just give everything time and remain hopeful, there are new treatments coming along all the time. Finally don’t google out of date, horrific stats, your journey and cancer is unique to you only.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Well I had spinal compression , so my mobility has been impaceted. Also both my hands tingle all the time and my right hand is quite numb.
I’m a lot slower now , and I get breathless.i can’t go to work anymore because of my spine .i can’t overdo things. But, I am here. And living my life the best way I can!!

What advice would you give to someone newly diagnosed?

I would say try not to panic, and try to think about what the medical team are saying .its all so much to take in, but try to stay calm and to talk about it .

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I feel grateful for every new day i am alive and for all new memories i can make, but i am scared for the future and for my loved ones.

What advice would you give to someone newly diagnosed?

Take 1 day at a time and think about what is happening right now, try not to think too far ahead.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I still work taking 999 calls for north west ambulance service but had to go from full time working 60 hr weeks to just 9 hrs pw. My mobility is poor and i am always light headed. Its massively impacted my children as its the unknown, so i do my best to take my time and live each day as if its my last! I originally had cancer in 2019 at the start of covid and it was terrible having to go through appts, surgeries, chemo and radio alone.

What advice would you give to someone newly diagnosed?

Live for each day, dont worry about how long you have left, spend your time making memories with your loved ones.....and MOST IMPORTANTLY DO NOT GOOGLE!!!!

Time for diagnosis:

Didn’t go to gp as no symptoms went private as 51 and not been called for mammogram

How does secondary breast cancer affect your life?

It has completely changed my life I have had to learn to live with it and the effect the drugs have on me not the cancer as I had no lumps or symptoms when diagnosed. It has made me appreciate every day I have and to live life and not off doing things I want to do. I spend time with those I want to be with and learnt to say no to things I don’t want to do. I still work full time from home and rest when need to. The pains and fatigue are what upset me the most but I am alive.

What advice would you give to someone newly diagnosed?

Don’t panic don’t google and it’s no longer an instant death sentence may not be curable but is treatable and new drugs coming out all time. Surround self with positive people that allow you to be realistic too. X

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Limits activity, has stopped me being able to drive.

What advice would you give to someone newly diagnosed?

Love the life you have, think and live positively and make the most of each and everyday.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

SBC impact on my life has lessened over time. I'm nearly 12 months on from my primary diagnosis. Initially I was in despair. All I could think about was leaving my children. I thought my heart would break. I'm now facing life looking at things on a different slant. A nurse happened to tell me 'I am living with it' and that was a pinnacle moment. Since then I've been more positive and this is how I intend to carry on. I don't know how long I have left, but whilst I have things to live for I will carry on! That said the sad days still come on occasion but these have lessened. In short SBC is a roller coaster which you have no choice but to ride and unfortunately you can't get off.

What advice would you give to someone newly diagnosed?

It will take time to accept what's happening. Let the dark days come, they will pass. Don't look too far ahead, you'll scare yourself. Take one day at a time. And enjoy the small things.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

It’s a total head melter to be honest every day I have to just get through the 24 hours Its really changed my life due to treatments & medication
I have returned to work but am struggling as management don’t understand how difficult it is for me due to fatigue this sounds very negative but I am positive every day I have 5 children who need me here & I will do anything to stay as long as I can for them

What advice would you give to someone newly diagnosed?

Just take one day at a time 24 hours is all you can manage - sometimes your world seems like it’s crumbling but let & then shake yourself of the next day
This is your life live it as you choose

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Brutal fatigue. Huge problems with my bones including requiring a total hip replacement.

What advice would you give to someone newly diagnosed?

Don’t rely on Dr Google!
Find a support group (in person or online, online groups are fabulous)
You are on your own journey so please don’t compare yourself to anyone else with your type of breast cancer.
Ask,ask and ask again if you have ANY queries, questions and/or concerns.

Time for diagnosis:

2 years

How does secondary breast cancer affect your life?

Fatigue
Neuropathy
Aching bones

What advice would you give to someone newly diagnosed?

Ask lots of questions
Take it as easy as your life allows

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I feel like a different person. I am constantly exhausted, anxious about every ache and pain.

I try to be the old Lorna but recovery from a busy day, night out or holiday sometimes makes you wonder if its worth it!

What advice would you give to someone newly diagnosed?

Find your tribe. The support and understanding which comes from other people with the same diagnosis is invaluable! Going to the first group is hard but so worth it!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The treatment can sometimes be harsh and tiring. It's like being on a treadmill, one treatment may last for a few months, you get into a routine of which days are better and plan your life around that, then it stops working and it's on to another regime and all it's new side effects. The toughest thing for me is watching my family suffer and wondering how they'll cope when I've gone. It's so much easier being the patient rather than the people around you.

What advice would you give to someone newly diagnosed?

The first few months are like 'rabbit in the headlights'. You really feel that, this is it, I'm dying of cancer. But then something clicks, you reach acceptance and a realisation that you are living with cancer and it feels less intense/scary.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

My mobility due to all the joint pain from continuous treatment.
Fatigue - I can’t do the things i used to do.
Loneliness: i feel excluded from society in many ways.
Complete lack of understanding from others, because they think you look fine!
Its hard to work k and have MBC.

What advice would you give to someone newly diagnosed?

Reach out to others who are in your position. You’ll get lots of info and help from groups like this. Attend groups or just go for a cuppa at your local Maggie's centre / MacMillan, if you can. Get counselling. If you’re working, explain in detail how it affects you at work. Get help from Occupational health, if that’s an option.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I no longer work
I’m tired all the time
I hardly go out with my friends anymore
Treatment makes me unwell
My family worry about me
I have lost my hair again

What advice would you give to someone newly diagnosed?

Give your self time
Cry scream do what you need to but then … pick yourself up, keep moving keep going keep striving to be as well as you can.
Make memories spend time with your loved ones…leave work if possible do what you want.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

I was diagnosed after sclerotic lesions on my spine and pelvis were suspected during my primary diagnosis. It took 9 months to be confirmed as stage 4.
I am still relatively active but feel like I am facing a brick wall at some point when the treatments will stop working. I can’t see beyond my children being teenagers. I hope they have plenty of time with an able mum and I can teach them the true values in life.
I appreciate the dawn of each new day, nature, the seasons, the skies and clouds, the simple things in life. That life isn’t about money and stress but love, compassion and human connection.

What advice would you give to someone newly diagnosed?

Take the time to absorb and sit with your feelings. The shock and fear can be overwhelming. Find an counsellor to work it through and get those feelings out! Find a group you enjoy, maybe one where you have cancer in common but raise each other up. Over time I’ve realised I am still here, and I still have so much more life to live and love to give. You will too.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I worry I won’t see my children grow up and be there for them.

What advice would you give to someone newly diagnosed?

Find a support group and speak to others with MBC. You are not alone! Life is for living, so go live your best life!!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It has made me life my life to the fullest and take nothing for granted, however it is mentally tough and physically exhausting.

What advice would you give to someone newly diagnosed?

Take one day at a time, dont think too far into the future. Deal with the facts not the what ifs.

Who and how has SBC affected you?

I didn’t know what drop down to select as I am both a family member and a patient to this disease.
I lost my twin sister at the beginning of the year I was with her every step of the way through her journey seeing the true cruelness of this disease. Then 3 weeks after her funeral I was diagnosed with secondaries almost 2 years after my primary diagnosis.

What additional support do you need?

I think the support I would like to see more of is to family’s and partners of the patient. There is such little around for them yet they are going through so much.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I’m very lucky as I’ve had an excellent response but I’ve had to part retire at 41 due to my spinal fracture. I worry about seeing my daughter (who is 2) grow up, I worry about money, I worry about the impact on my friends and family. The diagnosis is like a stone in a pond and it’s horrible to feel like the ripples impact everyone around you. Even though I’m on my first line treatment which is an injection every 3 weeks, I have to work hard daily to stay healthy and happy. I can’t take anything for granted. It feels like there is always a fire burning that I can’t put out. BUT I do feel privileged to have the clarity of the diagnosis in terms of shining a light on what really matters and learning to live in the moment. I’ve developed all sorts of coping mechanisms which have made me a stronger person, as cliched as that sounds.

What advice would you give to someone newly diagnosed?

Take each day (or hour or minute! Whatever you need) at a time. Remember that the future is unknowable and our bodies are capable of doing amazing as well as terrible things. A year ago when diagnosed, I couldn’t lift my baby even though she wasn’t yet walking. Now she’s running everywhere and I’m back to lifting and exercising. I had multiple bone metastases and now I have no evidence of active disease. Unexpected things can happen; good as well as bad and so much progress is being made with treatments. Seek out research and keep an eye on new drugs in the pipeline. Remember that everyone responds differently and your story is your own. Seek out the survivors of 20+ years - they are out there!! - and use their stories as beacons of hope, whilst remembering that your situation is unique. Sometimes one foot in front of the other climbs the mountain. And surround yourself with joy whenever you can and whatever that means for you as a counterbalance to the hard times.

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

It affects everything, I had to give up my job and stop running which was my passion, and I am not able to do a lot of things I did pre diagnosis so I feel like I have had to adjust my life because of that and went through a process of grieving for the old me. I am in constant pain due to my spinal compression and dealing with side affects from my medication such as fatigue, menopausal symptoms, mouth ulcers and upset tummy. Every new ache or pain makes me worry that the cancer has spread. I worry about how my husband and children will cope when I’m not here a lot too. I try to stay positive but some days it’s harder than others. I live my life in chunks of three months - the time between CT scans trying to do as much as I can within this time frame but I will not be defined by my diagnosis and I live a full life. I enjoy cold water swimming, I go to the theatre a lot and take holidays as often as I can. I also walk every day which has been my saviour and helps my mental health and my fitness

What advice would you give to someone newly diagnosed?

Take one day at a time. Everything seems overwhelming to start with and some days will be worse than others but that is okay. Once you have a treatment plan in place things will get easier. You are not going to die soon, there are lots of us living long, full lives. Join the Make 2nds Count Facebook group you will find support and help from people who know what you are going through.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Am in pain at times so struggle to do somethings. I do get side affects from the medication but just learn to live with them. It’s the amount of appointments that take over and the chasing for appointments can make life draining.

What advice would you give to someone newly diagnosed?

Do not google! Listen to the oncologist and ask advice from others in similar situations. Breast cancer now gave me some good advice. Listen to your body, rest when you need it. Most of all fight this horrendous disease and go grab life!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Massively with tiredness and a lot of side effects from medication

What advice would you give to someone newly diagnosed?

Get as much information as possible by joining a social media group on secondary’s they are a source of information and support. Don’t look at google and don’t expect the oncologist to tell you everything be prepared to be disappointed

Who and how has SBC affected you?

It is my beautiful daughter in law Laura killen,we all have been involve going through this awful cancer its like someone holding a gun to your head and saying i can press this anything ! It never leaves your mind no matter what you do we see lauras ups and downs and how she is trying to live her best life as she has 4 children the youngest one being 7 years old and 12,16,19 all of them see there mum being tried every day and bless them as they never complain if mum need to rest. But i know laura feels so guilty all the time because of cancer she cant give the time she would love to the children they all live with us and we all try to help the best way we can.

What additional support do you need?

Any help would do.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

I worry about how much time I have left . I fear leaving my loved ones . SBC has made me appreciate my life so much more .

What advice would you give to someone newly diagnosed?

Stay away from google. Don’t read the stats they aren’t accurate and will just worry you. Most of all stay positive .

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It leaves a shadow over everything I do say and think. I am physically well but find I am still grieving my life

What advice would you give to someone newly diagnosed?

Try and find happiness and joy in things, eat the food, drink the wine, travel !

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Life can be so unfair! Increased drugs, all the pills and all the injections.

Sometimes feeling full of fear and anger that my image of what I thought the future would be has been stolen from me.

Yet, greater love and appreciation for all those closest to me, and never taking anything for granted!

What advice would you give to someone newly diagnosed?

Allow yourself time to "take stock of the shock"!
Avoid Dr. Google
Accept this is the beginning of your new life.

Time for diagnosis:

I was diagnosed at the hospital when attending for something else.

How does secondary breast cancer affect your life?

I am sad that some of the side effects mean I can’t do the long walk I did every day with my best friend that saw me through the last six years with Cancer…and Covid as I live alone. I am sad I get tired early evening so can’t stay out often with friends or at family gatherings. I have retreated somewhat from life as even driving tires me out so I don’t go out and about as I did every day. I feel six years of advocating for myself and still not being listened/believed (by my team..sometimes..)has tired me out down to my cells.
BUT…Generally, I am still the happy person I have always been, I love my friends and am fortunate that they still check in with me, I don’t say no( if possible) to any invitation. I am stronger in myself and won’t be walked over anymore. I love my life!

What advice would you give to someone newly diagnosed?

Never, ever let it go if you truly feel something and your team won’t listen. Keep making a noise, get your Sec.Breast Cancer nurse/GP on your side and don’t give up!!!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I think of SBC as a gremlin that’s trying to drive the car of my life. It drove the car a lot in the first 12 months - but it’s going in the boot!

What advice would you give to someone newly diagnosed?

Be kind to yourself! You have to grieve do give yourself permission to grieve the old life. Then find some hope that a clever scientist will find the cure and make it your mission to live long enough for the cure.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I’m breathless, so limited with what I can achieve was h say. Friends are planning a trip to climb Matchu Pichu which I can’t join. I had to give up my job as a teacher as I was exhausted and felt ill. It has however given me a new appreciation of each day and I notice everything around me in more detail. Each experience is precious and I treasure every moment. I live with this shadow behind me watching me. I don’t know when it will finally envelope me into its clutches and I fear the pain that will come with that. But… I live the life I have got and try and appreciate what I do have.

What advice would you give to someone newly diagnosed?

Get out and about in nature. A little walk everyday hearing birdsong and seeing the seasonal changes reminds us of how nature is constantly renewing itself and life and death go hand in hand.
Go on a retreat with Make 2nds Count, it changed my outlook completely. Connect with others!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

SBC affects my life on every level. Side effects from treatment, aches and pains are a constant reminder of the disease I have in my body. I have been privileged to have met soo many amazing women along the way since my diagnosis, but sadly this means having experienced a lot of loss too. Each loss is a sobering reminder of what the future holds.

But through all the sadness and the grief there is positivity too. I have discovered a new sense of carpe diem, where I used to find excuses not to do things, I now feel more confident in booking it. I am trying (and hopefully succeeding) in creating memories for my daughter so that she doesn’t just remember mummy for breast cancer. It is also important to remember that stage 4 cancer isn’t the immediate death sentence it used to be, hope is important to keep a hold of, there are new treatments all the time and I try to remind myself that I’m living with a chronic illness rather than a terminal one.

What advice would you give to someone newly diagnosed?

Accept all the help you can, don’t be afraid of hospice or palliative help - it doesn’t just mean end of life and there are often services that you can access to help you live well with cancer.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Having a SBC diagnosis is life shattering. The uncertainty of what lies ahead and the prognosis is sometimes too much to bear. I’m an otherwise fit and well 41 year old mother of two. I’m still working out how to live a full life with MBC cancer and am hopeful more treatment options become available in the near future, especially for TNBC which I have.

What advice would you give to someone newly diagnosed?

Do not google! Have some tough conversations with yourself - keeping busy is one coping mechanism but not healthy in the long term. Don’t try and be the perfect cancer patient who is smashing it, looks great etc. all the time as this isn’t possible and just makes everyone around you happy.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Every aspect of my life has been challenged. Not always in a bad way. Good things have happened too.
Life happens, we can’t control it. We try but we can’t.

What advice would you give to someone newly diagnosed?

You’ll be given so much information, but instead seek out support of those in the same position. This helps. I hate it when people say stay positive,….. but instead, find your own path. This will happen and enjoy living while you are! It’s very unfair, all of it, but don’t waste your time being angry. Ride the rollercoaster.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I’m an optimistic person and was going to answer this to say it only affects me mentally. Except that’s not true.
I experienced panic attacks in the lead up to diagnosis and now much less frequently. I’ve given up horse riding, which I used to do almost daily. I’m scared to cycle. Both of these activities were big in my life.
I still work full time and not missed a day (good heavens I must be mad) but SBC impinges because of appointments that last far longer than they should which gives me extreme stress with a busy work diary.
I feel I should stop work and relax for the time I have left, but we would have to sell up and I’m not sure I have enough energy for that & emotionally it would be really tough (involves our horses who are our pets too).
I’m 62 in a month & believe I would be lucky to get to pensionable age -67. I miss 66 by 11 days. Tbh when I realised that I sobbed. It makes me resent having paid into a system all my life, but then it’s for the greater good, I know.
Life feels really hard at times as I feel I’m on a hamster wheel when I really should not be. I don’t know how to stop it, but then maybe the hamster wheel is good for me.

What advice would you give to someone newly diagnosed?

Give yourself time to grieve and then crack on. Arm yourself with knowledge and most of all be kind to yourself.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I'm 46 and had to medically retire as I'm on weekly chemo which has made it impossibleto work. I have a 7 year old daughter. I had immunotherapy as a first line treatment but it caused seizures. As a result of the seizures I was unable to drive for over a year. I couldn't do the school runs, take my daughter to her activities or just go off somewhere on a whim. I had to rely on family and friends to get me to all my appointments. Thankfully I now have my licence back and there isn't a day that goes by I'm not grateful for it!

I have chemotherapy ever week for 3 weeks, then I get a week off. Every week I have to get to hospital for blood tests and then there's numerous appointments with my oncologist, nurses, haematology etc. I have scans every 3 months to look at how the cancer is behaving, my anxiety is through the roof every time waiting on results. I've been admitted to hospital numerous times due to fevers, had blood transfusions, bone marrow tests, a port inserted for treatment to be administered- the medical procedures are endless.

I feel my life is only half my own now as I have to live by the cancer hospital timetable. I can't always do what I used to with my daughter and that breaks my heart.

That said on the good days we make the most of it, we are always looking for the glimmers in every day. We've done so much this year and I'm grateful my treatment is currently holding the cancer back and enabling me to keep making these special memories with her.

I have a lot of joy in my life and I choose to focus on that.

What advice would you give to someone newly diagnosed?

Hold on... the initial diagnosis is a whirlwind of emotions. There's so many questions, what ifs and unknowns. Do whatever you need to do to help you, the diagnosis affects all those around you but it's vital you put yourself first. Seek out support if needed, I had some initial counselling through a local cancer charity. Try not to panic.... it is possible to live a joyful life alongside incurable cancer.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have been fighting cancer for 11 years now, people do not understand how the fatigue of 11 years of poison affects the body and mind. I am exhausted and so tired but a wife and son and good friends are not ready for me to head to the stars yet and neither am I.

What advice would you give to someone newly diagnosed?

Never give up, we are all just helping each other home. We must keep swimming!

Who and how has SBC affected you?

My auntie had breast cancer, not secondary breast cancer she had Padgets disease. She had a hospital nipple tattoo done that was very traumatic and extremely painful then it faded away. She was unable to look at her breast for over ten years due to this, she felt shame where she should have felt strength. As a tattoo artist I couldn’t understand why this had happened to her. I learnt how to safely tattoo 3D realistic nipple tattoos and started the uk and europes first mastectomy tattoo charity (the nipple innovation project) to offer a higher quality, long lasting and empowering service to her and other folk who need it. I started this registered charity 6 years ago and now we have partnered with the nhs to offer this to more people throughout the uk. We don’t charge for this service.

What additional support do you need?

Not necessarily me but what we can offer to other people in similar situations. People deserve to feel good in their bodies after losing so much to cancer and going through major changes, we strive to raise awareness of our service and help more people feel comfortable in their bodies as they deserve.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I was diagnosed 'de novo' i.e. straight to secondary after discovering a lump on my collar bone. It was a huge shock to all of the family as I had always been fit, healthy and a proponent of healthy eating!
I had been looking forward to retirement but my plans were totally changed by SBC. I can no longer travel for as long as I want as everything is organised around hospital appointments. My elder daughter lives in Australia but the chance of me visiting is now reliant on my getting travel insurance, with many companies refusing to insure me.
When my son set his wedding date for two years later, I was quite upset as I was scared of not being there (either dead or too ill to attend). Likewise, I am sad that I won't be around to see my grandchildren grow up.

What advice would you give to someone newly diagnosed?

My advice would be to
1 Avoid google - don't terrify yourself with out of date info!
2. Have some specialist counselling
3. Give yourself time to adjust and be kind to yourself.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It impacts life every single day the mental effects are huge as well as the ongoing physical side effects
Trying to live well whilst knowing at any point that the rug could get pulled from under you is the hardest thing

What advice would you give to someone newly diagnosed?

Try to meet other people going through the same no one else gets it like those people with a similar diagnosis
The norfolk secondary sisters group means the world to me! yes we’ve seen loss and that’s hard but the support it gives having these people in my life is invaluable

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have many hospital appointments and also find I often have to chase for appointments, especially scan dates and to check they have the IV access team are available when I am having scans.
I also regularly have aches and pains in my bones and sometimes struggle with walking due to pain.

What advice would you give to someone newly diagnosed?

Don’t google, listen to your specialists as they can give you all the information. Speak to other patients but remember all cancers are different so no treatment is the same. Stay positive and live life to the fullest.

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I have had to retire from my civil service job that i loved due to side effects. The cancer has spread to my liver and bones, in particular my spine which means i now rely on walking aids most of the time. I used to be the 'life and soul' of a party but now i am too tired to be the person i was and feel like i have lost the 'fun' side of myself due to fatigue. I used to be really confident and safe within my mental state, now i am less confident and find anxiety creeping in on occasions. Despite all of this, my diagnosis has brought me ever closer to the special friends and family in my life. Me, my loving husband and beautiful young daughter are making memories every day.

What advice would you give to someone newly diagnosed?

I was diagnosed de novo so was a big hit all at once! Join forces with others as soon as possible, there are lots of organisations and places that can help in many ways.
I always tell myself to be positive but realistic. Set goals, but there is no need to set the bar too high, that way, when you get there, its always a bonus.

Time for diagnosis:

I was being treated for primary BC when it was discovered it had spread so my GP was not involved.

How does secondary breast cancer affect your life?

I had a very poor prognosis, so in 2019 took ill health retirement. For the first couple of years, treatment, scans, appointments etc were a weekly occurrence. Since September 2020 I’ve been on immunotherapy which is working really well for me. I have 4 weekly IV treatment and 6 monthly CT body & MRI head scans. I am able to live a busy and fulfilling life.

What advice would you give to someone newly diagnosed?

You will be overwhelmed and terrified in the early days and weeks, this WILL pass. Accept all the help and support you are offered. Look after your mental health, find a range of things that work for you and use them. The road ahead is not the one you would have chosen but eventually you will hopefully find that you can live a good life alongside MBC.

Time for diagnosis:

I didn’t go via GP for recurrence I went straight to breast clinic

How does secondary breast cancer affect your life?

It’s there all the time. I take chemo tablets 4 twice a day so you think about it when you wake and when you go to bed. But I’m fortunate that my treatment is gentle and working well right now. I’m trying to build up my resources so I can cope when things get worse. I am defined by my cancer but it’s my choice - I’m a patient advocate and volunteer, I spend half my time contributing to studies and trials, steering groups for charities and volunteering with Macmillan. My photo is from a clinical trials conference I was privileged to attend as a patient representative. I work part time and I hope that when I have to stop I can keep representing patients and pushing for awareness and change for as long as possible.

What advice would you give to someone newly diagnosed?

Find out if you can get a holistic needs assessment done by Macmillan Improving the Cancer Journey service or another support service. They will go through all your concerns and give you advice, refer to other services and be a friendly ear.

How does secondary breast cancer affect your life?

I had my own business and 3 kids.
I had DCIS in 2005. A lumpectomy.
Radiotherapy. Tamoxifen 5 years.
I was very tired. Went to bed every chance I got. Ended up losing my business and had a breakdown. Had pain in my back, pelvis felt awful. My GP insisted I had fibromyalgia for at least 5 years. Perhaps I had…. as well as the un diagnosed mets in spine. I got an ex ray for pains in stomach and had hodgekins lymphoma which was treated with chemo. They saw on that Ex ray that there were holes in my vertibrae and they told me it looked like secondary breast cancer. I was then given pain relief.
I can’t do the things I would like to. I think I can and when I try my body is not up to it.
I go out to church and events in the village hall but I need to find a seat with a good back to stop my back pain being so bad.
I try to walk about 5000 steps a day. Sometimes I manage. I feed my chickens but need help cleaning out their coops. I can feed calves if I put hay in a wheel barrow. I feel good on days I manage to look after the animals, feel as if I have a purpose in life. Realistically I couldn’t still have animals on the Croft if my adult children didn’t help with heavy chores. I clean out the wood burning stove and carry in the coal and the logs and light the fire. When weather is cold I have to do this mid day to heat up the house.
I have 2 dogs which make me very happy. I brush them and take them out for small walks around the Croft and down to the sea. When my adult children come back from working 3 weeks on 3 weeks off, they do a lot of the heavy work. They change my bed and do the washing and do deep cleans of the house.
Mentally it is hard to remember to take one day at a time.
My illness has affected the lives of my 3 children. They are very good to me.
They try ti make sure one of them is around and they make sure my dosset boxes are made up. I forget things. Due to my medication I think.
I don’t go out of the village on my own.
I am too anxious and I think it is incase I couldn’t manage.
I can drive in the village to take the dogs to the beach but I couldn’t drive to town, 2 hours away to get my 12 weekly infusion.
I don’t know anyone else with secondary breast cancer, have never been directly in touch. I look at the groups online but don’t comment. Mostly I find them helpful.
Sometimes I pause the group for 30 days and it means I don’t have to think about it.
At the moment my hair has grown back and I look quite healthy. People say ‘ohh you look great, you look so well’. As if I was faking my illness. I find it difficult the silly comments some people make. I am slowly realising that I can’t go to music festivals because I couldn’t stand for long enough. I get tired quite quickly. In my head I think I can go and do things but then in reality I can not manage.
I have pain in my shoulder blades, lower back , pelvis.
I also had a Meningioma brain tumour which was pressing on my optic nerve, I was blind in one eye. A cleversurgeon removed it and I have regained the sight. I am very thankful for this as I do a lot of crafts.
My oncologists and surgeons say that it is incredible bad luck that I have had the 3 apparently unrelated issues.
The breast cancer mets.
Hodgekins lymphoma in stomach
meningenoma in brain.
All things considered, at the moment I have a good quality of life. I am greatful for each day I have. I swim in the North Atlantic Ocean all year. We have beautiful white Sandy beaches. Cold water swimming makes me feel alive. The buzz from a swim can last a couple of days. In the water there is no pain and the cold water feels amazing. I live next to the sea and come home for a hot shower. We have a swimming what’s app group so usually 5or 6 min friends there. I can make pots of soup but have to use the slow cooker because my memory is so bad that I forget and the food is all burnt to bottom of pot. My son insists I use the slow cooker and he is right. I like if I can make a good pot of soup or mince and tatties and have it ready to feed whoever is at home.
It makes me feel useful. Other days I am tired and sore and it takes me all my time to get up and showered and dressed. If other family members are home, I get lazy and let them do more for me, I don’t think this is good for me. I have more incentive or I should say out of necessity, when I am on the Croft on my own, I have no choice but to get up early , let the dogs out, let the chickens out and feed them and feed the cows. This is actually good for me. I take my pain killers and get on with it. It is not very often and never fit more than about 4 days at a time. The shift patterns of the life at sea for my son and daughter sometimes leaves me at home alone with the animals. I also have friends in the village I could call on if I wasn’t managing.
Generally I have a good quality of life, my children are always there for me and I feel truely great full .

What advice would you give to someone newly diagnosed?

One day at a time.
Educate yourself as much as possible about your disease. question your oncologist until you understand. Ask if you know if different treatment options.
Have a fresh look at your priorities in life. Remember it is more difficult for your family and they feel helpless, be kind and grateful for everything they do for you.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I can’t work as I was self employed, so financially I am struggling. Treatment makes me very tired and I have bone mets so they sometimes ache. And my sleep is awful with the 3am gremlins!

What advice would you give to someone newly diagnosed?

Take one day at a time, allow yourself to have the bad days, feel the feelings but don’t live there!
I really think having a positive attitude helps you feel better, sometimes it is hard but there is usually something to smile about, even on the worst days. I find exercise really helps, mentally and physically. Rest when you need, but try for little bit of movement (something you enjoy) every day.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have had to retire from work. Side effects from medication impacts on my daily life and on my family’s life also.

What advice would you give to someone newly diagnosed?

Please seek face to face support and advice. Do not use google. Be easy on yourself, you do not have to face this alone or try to do more than you are capable of.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have three weekly maintenance treatment for mets to the liver, but 2024 started with mets in my brain leading to brain surgery and radiotherapy. I have just turned 30, so from diagnosis (de novo) have had to come to terms with never having the opportunity to have children, and the short life I may lead. This has been and is difficult to process being particularly young, and there being so few options available for secondary treatment. I have also now had to resign from my job as I cannot keep up with the work nor stress. Generally, it causes me to think twice about events/trips/days out etc as to whether my energy is up to my plans, or how I need to adapt to suit what I can actually manage. The most recent mets to the brain have also triggered a ban on driving, and so I have lost a lot of the independence that gave me. It also adds a stressor as I worry about how my husband and family are dealing and will deal with my illness. Essentially, I have to learn who I now am as a person and what my life now is any time there is a change to my condition or any progression.

What advice would you give to someone newly diagnosed?

It’s a massive kick in the face, take the time to process what’s going on and try not to rush back to ‘normalcy’ as this will have changed and you will need to learn the new normal. Be open and honest with your medical team, and learn advocate for yourself if something isn’t right. Lean on your support network, you need their support and they want to be able to help you. Life isn’t over I promise, it’s just different.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It’s with me every day. I’m now at a good point where I am living life with an almost long term condition. I’m on full chemo IV, but I’ve had 4 scans with no measurable disease. I’m finally settling into the routine. Side effects are tough but manageable. My family and friends are incredible and the support is immense. We’re all affected daily , but we’re stoic and keep trooping on.

What advice would you give to someone newly diagnosed?

Ask for help ! Be vulnerable. Accept that people want to be there for you. Try to focus on the positive days. Try to be mindful and live each present day

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I was first diagnosed with primary advanced breast cancer October 2015
22cms of Lobular breast cancer
23/23 lymph nodes contained cancer
8/8 Estrogen positive
I first started on tamoxifen for 3 months to try and change shape of the breast cancer.
Then I had left side mastectomy January 2016
Then 6 rounds chemotherapy march 2016
Then 15 rounds of radiotherapy
started letrozole,but didn’t suit me had to change to anatrozole.
Monthly zoladex
Then had reconstruction fat from stomach.
February 2023 slight pain and 2 tiny spots showed on scan in spine ,so had a pet scan , but nothing lit up so scan again 3 months later, more tiny spots still not enough evidence for secondaries . I then snapped my muscle in reconstruction going to a personal trainer had to have another scan and spots showed up on sternum.
All my scans sent to a top muscular skeletal radiologist and they put it down to wear and tear. I had another scan 3 months later and was told 19th December 2023 my oncologist had enough evidence to say I had secondaries more progression in spine, ribs and maybe a spot on sternum, but told some of the wear and tear is healing. I started my new treatment 5th February which is Ribociclib and Fulvestrant , zoladex and bone strengthening injection. Now having secondaries in my bones is so scary. I am so petrified not knowing what my future holds.

What advice would you give to someone newly diagnosed?

Don't hesitate to ask for and accept help.
Talk with your medical team about what they can do to help you feel better.
Try to live in the present moment and keep doing things that make you happy.
Seek support from others with metastatic breast cancer.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

My life has completely changed, my mobility is poor, I am tired all the time, I cannot work, I cannot do much of the things I enjoyed eg long walks due to my mobility. I cannot drive. My partner and family are hugely impacted and my partner is off work currently to care for me and take me to numerous hospital appointments. Within a week of my diagnosis I had emergency surgery to my hip as it wad at risk of breaking due to extensive bone mets and a week after that I had to wear a hard neck collar as there is a fracture in my neck. I am currently on a new treatment plan and having radiotherapy to my neck.

What advice would you give to someone newly diagnosed?

Initially it is a huge shock and you feel like you wont be able to experience joy again however in time and once you have all the information and a treatment plan and support in place it does get easier. Don’t be afraid to accept a referral to your local hospice as they don’t just help you with end of life they can help you to live better, I have received so much support from my local hospice with getting my pain meds right, welfare support and they applied for a blue badge for me which arrived in 2 weeks and has made my life easier.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I am living with cancer and have cut down to working part time, which really changed my plans for the future. I pace myself and manage to do fun things but to be honest, I never feel great physically so just fake it and push through a lot.

What advice would you give to someone newly diagnosed?

There are many treatments and there is hope. Getting through the first six months is the hardest. There are lots more good times to be had and memories to be made.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Constant fatigue, had to give up my career, first line treatment has stopped working and the cancer has spread despite clear CT scans. After two months of pain and being told it is a trapped nerve (like the 9 months of being misdiagnosed and told it was 'mechanical' not cancer and being refused a scan by msk (despite a prior history of breast cancer) prior to my metastatic diagnosis in November 2022, and I've finally had an MRI which has confirmed that the cancer has spread again and is pressing on a nerve hence the pain. No one said that CT scans with contrast don't always pick up the cancer. I feel frustrated that this has happened again. However, I keep finding the joy in everyday, no matter how small that might be.

What advice would you give to someone newly diagnosed?

Look at the research around the drug you are taking, be informed. Remember you can request your own scan report if you wish, which means you will likely see the report before you see your oncologist. It can cut the time you are waiting and allow you to go in having thought about what questions you want to ask. But only do this is you feel strong enough to receive potentially bad news by yourself. If you are feeling constant pain again, despite clear CT scans, request an MRI. Connect with other women (and men) who have the same diagnosis. Shared experiences can be really helpful, especially in dealing with treatment side effects. Keep finding the joy in everyday. Make a list of things that bring you joy so that on down days, when it's hard to think, you can look at the list and choose something, even if it's just having a bubble bath or sitting in the garden reading.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Side effects from medication cause a wide range of problems and although they are keeping me stable it does affect me physically and mentally.

What advice would you give to someone newly diagnosed?

Try not to panic, once you get your plan it feels a lot better and allows you to focus better. Try to engage with anyone that helps eg make seconds count. It allows you to talk about anything you want and even if the ladies can’t give you advice they will always send you love and care.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have had secondary breast cancer for five years. The first year and a half absolutely blew my life apart. I lost my business and had to finish work and live off our savings and I had so many appointments. My husband had to care for me and he retired early on no pension. It totally devastated me and my family.
After a mastectomy and lymph bode removal operation, I eventually settled on my targeted therapy. It was a hard journey, and I ended up in hospital many times, but eventually things settled. The main side-effect is debilitating fatigue that I have learnt to manage, however, I still end up feeling devastated sometimes if I’m having a bad day.
I also was affected with panic attacks and anxiety, which is now under control with exercise, meditation, counselling, Pilates, walking, healing, homeopathy and the addition of our beautiful little dog.
It’s hard to live with the worry after your diagnosis, but most of the time I now manage to cope very well.

I am living a good life, surrounded by a very supportive and loving family and friends and only do the good things in life and live with gratitude and mindfulness.
It’s amazing how much I now appreciate every little thing in life.

What advice would you give to someone newly diagnosed?

Reach out and get help and surround yourself with supportive family and friends. Get medical help with stress and anxiety and talk to your Breast Care Nurse and oncologists and agree your treatment plan together.
It does take a while to settle on your treatment. There is lots of help out there, so please ask for help.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I am unable to walk my dog, enjoy circuits or weight-trainjng at my local gym.
I am self-conscious about wearing my wig and putting on weight
Although my employer has been absolutely fantastic and highly supportive for me and my children, I feel that I am being over-protected and not being allowed to be my full professional and competent self.

What advice would you give to someone newly diagnosed?

Be open and honest with your medical and healthcare teams, your family and friends, yourself.
Ask questions, understand your diagnosis, the characteristics of your disease, your treatment options and the support infrastructure available to you.
Understand that THIS IS NOT A DEATH SENTENCE - a life with SBC can be long and fulfilling.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

My life as totally changed,I have taken early retirement at the age of 46,my main goal being to enjoy every single moment and I wasnt going to do that whilst working.
Since then Ive bought a motorhome and enjoy many holidays and trips with family and friends.
Im currently still on first line treatment and feeling very well so feel very blessed and fortunate. I tend to live my life in abit of a bubble (or denial)but it works for me.Im a very positive and hopeful person and refuse to let this rule me although Im only human and yes some days can be very hard.
I like to plan things so I set myself goals and always have something to look forward to currently planning my sons wedding this August so very very excited .

What advice would you give to someone newly diagnosed?

Its so so hard when first diagnosed and my first bit of advice is please let those tears flow your allowed to be angry,sad ,upset overwhelmed its perfectly normal,please dont bottle up these emotions.I literally cried buckets and buckets for the first few weeks but believe me when you get a treatment plan in place and start your new regime it does get easier.
Definitely dont google statistics everyperson is different and alot of the websites are outdated.
Lastly join a SBC group even if its just online the information and support you ll receive is incredible.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I don't work anymore, which when you still have a mortgage to pay makes life very hard

What advice would you give to someone newly diagnosed?

Join a group like Make 2nds Count to find a local group to support you. I don't know where I'd be uf my local group hadn't started up.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Regular chemotherapy but I’m still working and making the most of life.

What advice would you give to someone newly diagnosed?

Try not to think the worst and try to be as positive as possible

Time for diagnosis:

Didn’t go to GP - diagnosed through CT scan

How does secondary breast cancer affect your life?

Constant appointments- hospital, nurses at home, GP.
Constantly worrying about things completely out of my control.
Not knowing what the future holds and lack of treatment options.
Watching friends die from this dreadful disease.
Some friends and family stay away and your world gets smaller.

What advice would you give to someone newly diagnosed?

Stay away from Dr Google.

Who and how has SBC affected you?

My nail technician has breast cancer and in her lymph nodes awaiting double mastectomy
I am in a cancer support group (SAMs diamonds) and I interact with lots ladies who are on their journey and a lot have secondary

What additional support do you need?

I get my support from SAMs Diamonds as I have blood cancer

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Need to smash the odds for my 10 month old and 5 year old.

What advice would you give to someone newly diagnosed?

Keep hoping

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have a 15yo son, so in the immediate future, I am unable to go on long walks like we used to because of side effects of my treatment, and location of my secondaries (lumbar spine, pelvis and ribs). I'm also concerned about making long-term plans.

What advice would you give to someone newly diagnosed?

Believe in your treatment, your body's strength to endure, and spend as much time as possible with those you love.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have weekly trips to the hospital, extra visits for scans and then theres visits to the house from nurses. I suffer with fatigue so sleep alot more than i used to and means i cant walk the dogs or walk my sons to school or just generally halp with things round the house some days. Theres extra equipment in the house such as a stool in the kitchen and bath seat which i hate people seeing. I have to plan outings as i need to know how far i will have to walk or if i need a wheel chair. Alot of friends have stopped calling as they struggled to know what to say and do so my world is getting smaller which makes you feel down. I have very dark days when thinking about the future and this has effect my marriage as i can take it out on my wife. I have had to make plans for end of life care and what i would like for my funeral which at 35 feels unfair.

What advice would you give to someone newly diagnosed?

Take it one day at a time and do not google anything, theres some really supportive Facebook group who are happy to answer any and all questions you have.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have had to give up work so financially things are tough.
Spending 2/3 days a week having treatment is gruelling.
I’m lucky to not be in too much pain for now and I’m still quite fit and healthy so I’m trying to enjoy my life. It’s very weird being given a devastating diagnosis when you still feel quite well.
I’m terrified for my 11 year old boy, am sad for my partner of 2 years, and worried about my two young dogs.
I want to climb all the mountains and it makes me sad that I won’t see them all, but I’m trying to get in as many adventures as funds allow.
I believe in finding some good in every day, even if every day is not good, and trying not to let’s tomorrow worries spoil today.
I’m not scared of dying I just don’t want to!

What advice would you give to someone newly diagnosed?

The period between diagnosis and starting treatment is always the worst. Things always seem better when you have a plan.
Take one day at a time.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I've had to give up work due to the number of hospital appointments, fatigue and brain fog. I'm no longer allowed to drive due to brain Mets and haven't been able to go on holiday abroad (as I can't get travel insurance). SBC occupies my thoughts every waking moment with worry, fear and anxiety so I do what I can to block it out with as many distractions as possible.

SBC feels like it has robbed me of my career, my independence, my body and my future...

But on the flip side it has brought me closer to my friends, introduced me to new friends and I have been bowled over by their love, kindness, support and cake! I do my upmost to make the most of every day and do at least one productive thing so I don't feel like the day had been wasted.

I get to be around more and spend more time with my children, walking them to school, helping with homework and volunteering at the school with reading. I get to go to see their plays, concerts and competitions.

I get to see more of my friends and always have a plan up my sleeve of somewhere to go, an exhibition to see, a weekend away or a cheeky matinee at the cinema.

I get to spend more time in the garden, go for walks, and listen to podcasts but I also take time to allow myself to rest when I need to, or relax and be mindful by attending relaxation classes, Pilates and journalling.

What advice would you give to someone newly diagnosed?

Get a port fitted.

Don't be ashamed to take all the support offered to you from Railcards, blue badges and benefits to offers of meals, lifts, childcare or counselling.

Start a diary or journal - it's a safe space to let your feelings out, set yourself little goals for the week, or remind yourself of how far you've come and it may be nice for others to read in years to come...

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I was diagnosed when my daughter was 3 months old (I also have a 4 year old) so what should have been a joyful time was spent in emotional turmoil and constant hospital appointments. I'm lucky to not really have physical side effects but the constant anxiety is so tough. Plus having to manage all the appointments, tests, scans, prescriptions...it's a full time job just dealing with the admin. There is such a lack of general understanding about stage 4 as well so having to always explain it to people and manage their emotions is hard too.

What advice would you give to someone newly diagnosed?

Its a rollercoaster but it gets easier. Accept you will have moments of despair, don't be afraid of your feelings, but know that you will get through them and that life can still be joyful. Accept all the help you are offered and ask for more if you need it. Connect with other people in similar situations. When you're ready start to research and become your own advocate.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

I finally got my diagnosis by paying to see a skin specialist as I has some funny lesions appear my GPs had dismissed. I was diagnosed with metastatic breast cancer of the skin which is not widely publicised.

I am fortunate, that at the moment I lead a fairly normal/active life. My treatment has been successful so far but you live from scan to scan.

What advice would you give to someone newly diagnosed?

Don’t panic! You are not going to die tomorrow! Life every day to the fullest and enjoy living????

Time for diagnosis:

Mets were discovered by chance on a chest CT scan.

How does secondary breast cancer affect your life?

It totally changed my life:
- had to stop work. I was in healthcare and feel useless.
- need to use walking aids or wheelchair.
- moved bed downstairs.
- Cant look after my grandchildren while daughter at work .... devastating.
- I need to pace my activities which are massively restricted due to crippling fatigue
- my husband now does all the cooking, which i used to do and enjoy.
- i cant drive for more than 45mins due to mental fatigue so life very restricted.
- i cant keep on top of my large garden
- i need to pay a dog walker.
- i need to nap most afternoons

What advice would you give to someone newly diagnosed?

Dont Google. Talk to specialist nurses on Macmillan Help phoneline.
Join M2C for advice on coping from others who know.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I no longer work. I have regular hospital appointments. I take more opportunities to embrace life, and make nemories with family and friends. I gave joined a gym and work hard at keeping my body strong

What advice would you give to someone newly diagnosed?

Breathe! Your life is not over. You will have a new life, in many ways, it's better, as your priorities will change and you have a goal.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I try not to let it, but all the appointments, weekly chemo, PICC lines etc. Massive effect on life. Not to mention anxiety over scans, delays & any new aches and pains

What advice would you give to someone newly diagnosed?

As frightening as it is, don’t let it rule your life. New treatments come out all the time. Live, laugh and love life. Travel as much as you can. Don’t feel guilty if you feel down or sad or angry. There’s no right or wrong way to feel. It’s crappy to have such an awful disease

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It invades and inhabits every inch of my life. From the countless appointments, the physical discomfort to the constant overwhelming sadness that has become my normal. It has taken away my opportunity to see my children grow up and allow me to grow old with my family.

What advice would you give to someone newly diagnosed?

The pain is more acute at the beginning. We are strong, adaptive creatures who have to find a way to get through this. Trust your instincts and dont feel like you have to live life at 100 mph to 'make every day count'. This will only lead to an internal feeling of guilt. Be kind to youself and find people in a similar situation who 'get it'. Lastly do not google and do not listen to outdated statistics.

Who and how has SBC affected you?

My wife Debra. I am her carer and her sounding board. I try to be as strong and positive as she is. I frequently feelhumbled by her approach to life since she was diagnosed.

Her treatment is going its job so far and thank God for that. However there is always that bit of dread in the back of your mind when her scans are due, praying that the next one still shows that to be the case. Knowing that there is no cure is hard to accept in this day and age.

It is often difficult to get other people to understand that people can live for a long time with metastatic cancer, but will never be cured.

What additional support do you need?

I think it would be helpful if there were webinars (for example) for people like myself in the early days after diagnosis to share advice on how we can best be supportive - practically and emotionally, without becoming an annoyance or hindrance.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Its there in the background most of the time like a large shadow im trying to get out from.

What advice would you give to someone newly diagnosed?

Take your time to digest the information, theres a lot!
Look for the joy in life and find things to be grateful for. SBC can be devastating and make you angry, that wont help. Youve still got a lot of life to live so enjoy it .

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

I have suffered a major spinal trauma & paralysis (which prompted my de novo diagnosis). I then underwent spinal stabilisation surgery. I mainly recovered, but with residual pain and nerve damage. I’ve lost vision in my right eye, due to progression in 2023. I am tired. I am menopausal. Life is tough in ongoing treatment. It’s also extremely frightening being in a continuous cycle of scans and results.

What advice would you give to someone newly diagnosed?

Do not use internet search engines!
Utilise information and advice from the relevant UK-based charities, specific to our condition. Seek help and support from patient support groups. Don’t forget to breathe. And live. Incurable does not equate terminal. Seek out and live the life you intended as best you can.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Since my SBC diagnosis early in 2023 I've had Gamma Knife which initially shrank my brain metastasis for a year. Then between March 2024 and June 2024 it doubled in size. I was terrified I'd have to have brain surgery and depressed that I might have to chemo again (chemo for primary BC was hard). I truly have no fear of dying, I was more scared of the treatment. I didn't want to go through unpleasant procedures and lengthy ill health that would impact my quality of life. I dislike our culture's death phobia and am not someone who would continue to have endless procedures and debilitating, long and drawn out treatment just to eke out a little more time. I'd rather die with some grace and dignity, having prepared myself practically (I've paid for and planned my funeral); mentally; emotionally and spiritually for this rite of passage. So for a month that was my mindset. Then I met with the neurosurgeon who was wonderfully and refreshingly frank... if I didn't have my brain metastasis removed I would go blind in one eye and then I'd die (I was already experiencing visual changes). I asked for a few days to absorb and reflect on this as well as talk to my loved ones and do some fact finding. As I had a solitary brain met and no evidence of other mets elsewhere in my body, plus the fact that my met was in an easy to reach location (left temporal parietal lobe), surgery was the best option and it seemed foolish to refuse when it was eminently treatable. I reflected that it would have been a very different decision making process for me if I'd had multiple mets. So I had the surgery and hoped I wouldn't need any more treatment. I was pretty euphoric at this stage and felt that I'd been born again after the apprehension and stress of the build up to this point. But of course my oncologist said they recommended further treatment ... weekly chemo for 18 weeks to mop up the distinct possibility of rogue secondary cancer cells. Yuck. Again I went off and did my research before I decided. It was then that I learned I was in a good position to remain NEAD for as much as 10 or even more years (I'm 56) with the treatment regimen they were suggesting. So in my case the benefits of treatment outweighed the costs and now I'm plodding through the next few months of chemo, again. However, this slight blip should buy me a pretty good survivorship all being well (and if not and I
the cancer decides it's having the upper hand then I'll graciously accept that and tell oncology to stick their chemo up their arse). SBC has changed me beyond measure... physically, mentally, emotionally and spiritually. It has been hard and continues to be hard, sometimes I'm annoyed about it but mostly I'm pretty thankful this has happened to me. I'm aware my attitude is probably not necessarily the expected one. I even felt a little short changed, after all that preparation, when I realised that I might survive a lot longer than I thought. However, that realisation has happily only augmented my appreciation for my earth walk. And whilst I have learned to step lightly through this world and not get too bogged down in its more pointless (human manufactured) propaganda I am also enriched beyond measure by the beauty and joy of being human, and the opportunity to build relationships with all nature (human and the other than human). So, thank you cancer for giving me that gift and taking me on a journey that got my head out of my backside.

What advice would you give to someone newly diagnosed?

It will probably be hard to share all your feelings with your loved ones unless they are so totally on your wavelength that they truly get it. So do, do, do get support from the right professionals as well eg out patient services at your local hospice (remember palliative care is not just for end of life). And your BCN, a BCN is not just for Christmas (or primary BC) they're with you for life. If you feel it would help then engage with peer support opportunities ie others who are experiencing some of the same or similar challenges you are. Just knowing that you can be authentic about how you really feel (rather than protecting others feelings) can be a huge relief and support; either online or face to face. This diagnosis will make you feel as weak as a kitten but know that it will also make you as fierce as a lion. It'll wake you up but it doesn't have to be a rude awakening. My hope for you is that it will be a gift, albeit a bittersweet one perhaps. Not everyone wants to know everything about their cancer and its treatment but knowing enough to have informed choice is vitally important. Remember not to compare your situation to others too much. Although there'll be some common similarities, everyone's treatment and journey will be different. The doctors know what they're doing, everything will be tailored to you personally, no one else. But you don't HAVE to do what they say... they're not gods. The decisions you make should be yours, no one elses. You are you and you know what is most important to you and that won't be the same as what's important to the milkman's sister's nextdoor neighbour's auntie in Australia. I wish you well on this next part of your journey, there'll be times when you wish everything would just go back to how it was before but try and embrace this learning curve and see how many opportunities it gives you to be the human you were always meant to be. Oh, and be nice to the nurses... always

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I changed, I was so scared at first as they talked to me about compression of the spinal cord. I also worried about things much more than I needed to. I did eventually go back to work, but only half days and found that really hard. However I also started teaching pottery which was such a joy. Then my husband and I decided to do something a bit radical. We sold our house and bought a motorhome. We did manage some travels, but sadly didn't get over to Europe which was the dream. After a spell in hospital my treatment had to change as things with my cancer spread had worsened. I have good days and bad. Sometimes I'm maxed out on painkillers and struggling to get about. Then other days I'm ok.

What advice would you give to someone newly diagnosed?

My breast care nurse said allow yourself one duvet day, and ring her if needed more than that!
My advice, is to make the most of good days. Try not to scare yourself with articles on the internet. Try to add as much fun to life as you can, and spend lots of quality moments with family and friends.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I was diagnosed with secondary breast cancer a week after being diagnosed with primary breast cancer which was very hard, me and my husband hadn't even processed the primary diagnosis when the diagnosis of SBC was given.
It has been very hard, it has effected all of my family, especially our children, and my ability to look after my grandchildren. Chemotherapy has given me lasting side effects, and the ongoing treatment I have every 3 weeks also gives me side effects.
I have to really pace myself, i have had to stop doing activities because I simply don't have the energy, physical strength and ability to enjoy what I once did.
It has changed my life so much, and I still cannot get my head around how/why and there is no `getting back to normal' there is no normal anymore.
My life is lived from treatment to treatment and I have a scan every 3 months, so I also live scan to scan, if my scan is good news, I can relax for about 2 month's and then you start to worry about the next scan coming up, and this is my life now and honestly, it's terrifying at times, and it's hard to get your head around, I still struggle with it.

What advice would you give to someone newly diagnosed?

My advice would be to find time to relax, still go on holidays or short breaks when you can, allow your family and friends to support you, join a SBC group face to face or online, read stories rather than statistics, and learn to love the new you no matter what you see in the mirror, life is still worth living and fighting for.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

My life has been affected immeasurably. I used to be quite active, walking, running and generally beinf mobile. At diagnosis I had hypercalcaemia and was extremely unwell. The knock in effect is that I can no longer move around as easily. I can't walk long distances, get tired more quickly, even my gait has changed. And that's just one part of it. I am not currently at work, only just beginning my phased return after more than 12 months. My relationships with my husband, family and friends have changed, some good, some not so good. Life is harder than it used to be, and I'm not even the worst affected. I feel lucky, because many people are in a worse position than I am.

What advice would you give to someone newly diagnosed?

Take someone with you to your appointments. Once you hear those words, it's hard to take it all in, so have someone who can be a second, or even third set of ears. Write things down, and save questions for your next appointment. And try and have a little team. My sister and husband have been my support and I don't know what I'd do without them

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It’s touched everything in our lives and removed our vision of the future. My three daughters won’t remember a time without it and I worry for their future, they’ve seen and dealt with things at too young an age and who knows how it will affect their future.

The business we spent fifteen years building has had to be sold. I miss my wonderful staff.

And yet my diagnosis has set me free in a lot of ways. I no longer sweat the small stuff and it’s more important to make memories than money. The financial burden of being a cancer patient cannot be underestimated but what other choice do we have than to live and try to live well.

What advice would you give to someone newly diagnosed?

The beginning of your cancer journey is the hardest. The overwhelming amount of information doesn’t need to be absorbed all at once. Trust in your health professionals who are there for you and ask for help when you need it. You will spend more time dealing with the emotions of others around you than your own so remember it’s okay to take yourself away from it all when you need to. There is support out there and you will find your people, your new people for this, the new version of your life.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I had to take early retirement from work and since then I have slowed my pace of life down . I become very easily fatigued , tired, suffer with back pain and feelings of being overwhelmed. People comment that I look well and sometimes I do feel well, but a lot of the time I'm not . I used to feel scared a lot , but over the 5 years since diagnosis I have learnt to embrace my life and enjoy it . I love to create memories and find joy in the simple things, like taking my dog for a walk . I spend time doing the things I enjoy and I appreciate my life so much more now . I love to travel and have had some fabulous holidays recently . I have made some very strong bonds within the SBC community which brings a lot of joy and laughter, however it also brings so much grief and sadness when my friends die . I feel incredibly lucky and grateful that I am still on my first line of treatment and I am able to live a relatively full life , as my treatment is a targeted therapy and can be taken orally . I do worry about the impact of further treatment lines

What advice would you give to someone newly diagnosed?

Take time to process this information . I found it useful to join a local group of people living with SBC and see that it is possible to still live a good life and form relationships with people who understand and get you and your feelings.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It affects me physically and emotionally, I can’t do the things I used to due to fatigue and side effects from chemo. Emotionally because I know I won’t reach old age, seeing my family and friends having to deal with my diagnosis as well.

What advice would you give to someone newly diagnosed?

Research. Find out all you can. Ask the questions. Do as much as you can when you can. Spend time doing what makes you happy.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Life has changed a lot however I am still working as since being on chemo I do feel better.

I used to go to the gym however and was marathon training however and that has stopped. I am still going to the gym however this now involves walking on the treadmill and very light weights nowhere near what I did before. I am thankful however I can still go.

Socially I would go out on weekends with friends and husband however this very rarely happens now.

What advice would you give to someone newly diagnosed?

Try not to over think and make the most of every day.

I have uploaded a photo I am on the right hand side

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

Everyday I am reminded I am living with secondary breast cancer whether it's due to the side effects of treatment or the constant hospital appointments. It's hard to plan ahead as I never know, from one day to another, if I will have the energy to fulfil my commitments.

What advice would you give to someone newly diagnosed?

I would advise that you take the time to initially come to terms with your diagnosis.... everybody deals with it in different ways.
Take a notebook to your appointments with a list of questions that you feel have not been answered. Also ask for an explanation around terminology, which has been used by medical professionals, that you may be unsure of the relevance or meaning.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Death: It is there all the time - in the corner of the room - on my shoulder. Grief: waves of it suffocate you - the loves you will have to let go - the son you will not see become a man. Tough: to wring out the joy of your final months and not look into the future. Test: it pushes you to the limit physically and mentally. Unfair: I feel too young to go - to leave my young family. Sad: all of this beauty and it is coming to a close. Angry: that secondary cancer patients are not counted and therefore treated as second rate patients.

What advice would you give to someone newly diagnosed?

Grieve. Go through the process of grief - don’t let others tell you that you must be ‘positive’ - no that’s toxic. Try to laugh & love in good measure as the ‘intensity dial’ on your life is turned up. Be physical - nature bathe - swim - make a soothing playlist - meditate - go somewhere you’ve always fancied visiting. Turn to the greats of philosophy for solace. Meet others who are going through it and hold their hands. Give yourself plenty of love, patience & kindness. Breathe through the fear - it will pass. You will get your head around this challenge. You will feel joy in life. I have faith in you!!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

My life has changed completely. Before cancer I was working full time, mum to 2 teenagers, running, going to the gym, always on the go and full of energy. I had never been ill , never had primary breast cancer so had a huge shock when I was diagnosed . I have been living with secondary breast cancer for 6 years and although I am very grateful to still be here, it isn’t easy. I am in pain daily due to mets in my spine and pelvis which can sometimes be severe and debilitating. I have a lot of annoying side effects from treatment including heart problems fatigue, brain fog, terrible nails and dental issues. I have had to slow down a lot since diagnosis and whilst I look quite well and fit, I often feel very fragile and elderly before my time.
I am a very positive person, but do often struggle with the mental side of living with this disease. I have to live knowing that my treatment will stop working one day and that there are only a finite amount of treatments. The anxiety of not knowing when my cancer will stop responding to treatment and the guilt I feel knowing I might not be here for my family can be unbearable at times.

What advice would you give to someone newly diagnosed?

It can take quite a while to accept your diagnosis and you need to allow yourself to grieve your old life and adapt to your new normal. Allow yourself to have bad days, you don’t need to be strong all of the time. Try not to Google your life expectancy - the data is out of date and you are not a statistic, you are unique. Get support from charities like M2C and make friends with patients in a similar situation. Do things that make you happy and if you can, say no to things that don’t.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

In every way. As well as the physical side of SBC, the mental health side is especially difficult for me.

What advice would you give to someone newly diagnosed?

Get counselling & join as many peer support groups as you can. There's online & in person groups up & down the country.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Well, it has affected every aspect of my life, nothing has been spared. I have not worked since November 2022 so financially we have taken a hit. I went through over a year of chemo and I'm about to start radiotherapy and then (if scans go well) I'll get surgery in a couple of months. Treatment has caused various side effects including making me very tired looking after my two very small kids. I have lost confidence, lost self-esteem and lost my identity. I have learnt a lot of coping mechanisms though and I get to spend a lot more time with my kids than I would otherwise.

What advice would you give to someone newly diagnosed?

Just take every day as it comes, a lot of it will be horrible (can't sugar coat it) but just worry about one thing at a time so it doesn't get too much.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It’s changed over the 2+ years since diagnosis. I’m now at a stage where I am NED/Stable I manage to lead a fairly “normal” life. That said I suffer with anxiety and depression which hits at different times for no obvious reason, I have some gastrointestinal and fatigue side effects from my medication that although short lived can affect daily plans. On the outside to someone looking in I it may seem to have very little negative affect, but it’s there however subtle.
On the other side though it has made me more focused in how I live my life and who/what is important.

What advice would you give to someone newly diagnosed?

Take it day by day. Don’t rush to conclusions. Find the right people to support you and trust your instincts. You won’t be alone, there are lots of us around who “get it”.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I try not to let SBC affect my life too much but Hospital visits, GP appointments can be relentless at times. I often feel tired and drained which can affect time with family and friends

What advice would you give to someone newly diagnosed?

As cliche as it sounds, stay positive! Dont compare yourself to others, everyone's different and what works for one, may not work for another

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

In everyway, I had just turned 46 with a 5 year old...from hair loss, monthly low phosphate levels, now have osteoarthritis in my knee and elbow....I can not physically do what I used to do, as a person a mum amd wife, though I have found different things to do and My will holds sted fast!

What advice would you give to someone newly diagnosed?

Feel every single emotion and dont hide it!

Pushing it down inside will effect many things in your life, where as going through the grieving process and every possible emotion aids the journey.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I struggle with fatigue and pain as a side effect of medication. I have a 2 year old son who sometimes can't have my full attention if I'm having a bad day. I am also on reduced hours at work due to fatigue therefore our income has taken a hit.

What advice would you give to someone newly diagnosed?

Know your own body. If in doubt get a second opinion. Ask questions so you know what to expect and what your options are. Remember to look after yourself and be kind to yourself.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have lost a lot of my independence as my mobility has become very poor.

What advice would you give to someone newly diagnosed?

Dont panic!!! Take a deep breath, it doesnt necessarily mean the end is nigh. Some ppl go on to live a long time with secondary.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Limited mobility, can’t walk very far. We had just retired when I was diagnosed, it has limited our travel plans. Get very tired. Can’t party like I used to!!

What advice would you give to someone newly diagnosed?

Find out as much information as you can. Be your own advocate, ask questions. Be positive, enjoy every day. New treatments are being developed all the time. Don’t give up hope. Be kind to yourself. Take advantage of all the support offered.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The uncertainty is very difficult & side effects of drug's are hard

What advice would you give to someone newly diagnosed?

Dont think your life is over. I have been relatively well & on first line treatment sunce diagnosed

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I struggled to start with with the thought of dying. The side effects from medication are not the best. Joint pain mostly. The issue of picking up infections scares me. I feel terrible that this not only effects me but my family too.

What advice would you give to someone newly diagnosed?

Take time to process your diagnosis. Cry, shout get angry and breathe. Know that there is help available. Write your questions down. Ask them all even if you think they are silly. Take time to get into a routine. Ask family and friends for help if needed. Join online groups like M2C there is a lot of lovely ladies who are going through the same who know what you are going through.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Where do I begin .. I've gone from working full time to not working at all, from always being on the go to now being too tired all the time ... But I love that I get to spend my time with my grandson which I may not have had the chance to do had I not been diagnosed

What advice would you give to someone newly diagnosed?

Take each day as it comes and rest when your body is telling you to

Time for diagnosis:

Found as a result of preventative oophorectomy

How does secondary breast cancer affect your life?

It changes everything. It doesn't give me the full capacity of life to be a mother and my children deserve that. The constant medical appointments, disruption of everything!

What advice would you give to someone newly diagnosed?

Take things hour by hour, do your own research, fight your corner and find your tribe of people in the same boat!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Lost the ability to have children at the age of 28 and my career I worked so hard for

What advice would you give to someone newly diagnosed?

Please don’t Google you aren’t a statistic and no one can tell you how you will react to treatment. Find people going through the same as you it really helps.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

My cancer side effects don't affect me too much daily at the moment which is great. I have developed degenerative disc disease as result of treatment and that affects me more.
I am fatigued more than usual.

What advice would you give to someone newly diagnosed?

Take time to come to terms with your diagnosis. It will all feel very scary at first. Reach out to find others in the community and find reputable support like Make 2nds Count.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Fatigue is a problem as I cannot do things i want to do as im too tired. Im unable to work and have to be careful everytime i leave the house so that i don't pick up an infection.

What advice would you give to someone newly diagnosed?

Ask questions of your medical team to make sure you fully understand the diagnosis and treatment. Take all the helpcand support offered to you.

Time for diagnosis:

Several years

How does secondary breast cancer affect your life?

I am worried I am not all there to support my child ( now 18) my husband ( he needs support too) my parents and friends. I
had to stop working ( as a veterinary surgeon) , I am working hard every day to try and find my purpose/ drive.
I am reminded daily because of low energy levels, reduced mobility , low immunity . With everything I do it is there ; either on the background or on the surface.
And of course financially , I have only been able to work till 46. I am using my savings . So not much to leave for my child (ren).

What advice would you give to someone newly diagnosed?

For starters take a deep breath , try not to feel rushed . Have yourself well informed AND ask OTHERS to do this for you too.
Then always ask to be part of the team of medical people so you are informed and aware of what the options are.
Be positive , find soulmates ( you only have to dip into the warm pool of your secondary siblings if you feel you need it !)
Be proactive .
It all seems very dyer about my journey at the start but I found the body is still amazing at healing even with cancer in there. I am almost 7 years passed my secondary diagnosis.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have to have regular hospital appointments, either for treatment, blood tests or scans. They have just become part of my life but it does mean I have a constant reminder that I’m living with this incurable disease.
I also have to attend 3 monthly scans to ensure my treatment is working and that my cancer hasn’t started to progress. These appointments do cause me a lot of stress and anxiety, there is a big build up a lot of crying and worrying beforehand. So far I have been so lucky to be stable in my scans.
It does make me realise how precious life is, I know longer take things for granted and if I want something or I want to go somewhere I just do it now whereas before I was a bit over sensible. In some ways it has taught me to enjoy life but I can’t deny that it is a very scary place to be.

What advice would you give to someone newly diagnosed?

Find your support.
Whatever that looks like to you, an online or face to face group of people in a similar situation. Regular walks with friends, cake, literally however it looks for you make sure you surround yourself with it and embrace the support people are offering. You are not alone.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Turned it upside down, still getting to grips with it and letting it sink in life will never be the same.

What advice would you give to someone newly diagnosed?

Breath and let it all go over your head for a bit, try not to over think or panic and don't Google x

Who and how has SBC affected you?

Debra Hill who is a former work colleague but also a friend. She is a shining light of encouragement to many and an inspiration to me.

What additional support do you need?

I'd love to see Debra and others be able to experience all the things that they might have on their 'bucket list' b y embracing life and making every second count without the worry of financial constraints. So that Debra and others can fly free and flourish!

Who and how has SBC affected you?

My twin sister. We are aged 57. I live nearby and am around to
support my sister to chat about her feelings and worries and practical day to day living with secondary breast cancer ( going with her to certain scans and appointments that she needs support or just company for). I do research on secondary breast cancer and keep up to date with developments, like potential new treatments to prolong life. She was initially told the treatment would work for about 2 years, but due to





developments, she is still stable 7 years later.
I was diagnosed with lymphoma recently and she has been very supportive to me too. We can totally empathise with each other' situation, from different prospectives.

What additional support do you need?

1. Counselling for family members.
2. Local face to face support groups
3. There should be more general awareness that even if you are told you are in remission, there is a 30ish percent chance of having secondary cancer. The signs/ symptoms needs to be publicised
more.

Who and how has SBC affected you?

My lovely friend Debra, we are on a spiritual journey together at present. She has supported my new business/social enterprise massively and enriched my life beyond measure.

What additional support do you need?

Facts and information about how to better support this community in general. Debra isn’t just a friend she is an ambassador of all that is good in this world and what life is really all about. Deb gives so much of her own time and energy to raising awareness - the only thing I think would help would be more promotion and awareness.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Physically - back pain. Medication side effects. Mobility issues.
Mentally/emotionally - everyday is different. Can weigh heavy, its always there. Try to be positive.

What advice would you give to someone newly diagnosed?

Take time to sit with it and process it. Feel your feelings. Google statistics are outdated...don't reply on them.
A positive attitude is half the battle. Take time to let your body get used to the meds side effects...it gets easier.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have had to take ill health retirement from my job as a nurse. Constant tiredness and other side effects from my treatment. I think about my diagnosis numerous times a day. It’s difficult to get away from it. It’s hard seeing the effects it has on my family and friends too. However I have met new friends through my diagnosis and made decisions/tried things I wouldn’t have done before my diagnosis

What advice would you give to someone newly diagnosed?

Don’t randomly google things. Get your information from reputable websites such as Breast Cancer Now, Make Seconds Count, Metup Uk.
Take it a day at a time initially or even an hour at a time.
Join support groups and find “your tribe”. There are some amazing, inspiring people out there

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I was first diagnosed with secondary breast cancer in the liver in May 2014, when I was 32 years old. I had a lumpectomy, radio frequency ablation to the liver, chemotherapy and radiotherapy to the liver. This was an emotional rollercoaster for me physically and mentally. I had to take a year off work to get through the treatment and side effects, and then had to regain my strength and work out what I could and could not do. For 5 years I was stable with just Tamoxifen. I returned to work full-time and lived a fairly normal life. Then, following a PET scan in February 2020, just before the Covid pandemic, it was confirmed I had had recurrence in the liver. After another 3 months of chemotherapy I started long-term maintenance treatment consisting of Phesgo (Herceptin/Perjeta) injections every 3 weeks, daily Letrozole tablets, Zoladex injections every 3 months and routine CT/PET scans every 3 to 4 months. I am now back at work full-time, although I do have to be mindful of my side effects which mainly involve fatigue and low energy. I feel very lucky that I work at a company and with colleagues that are so understanding and supportive.

What advice would you give to someone newly diagnosed?

Be your own advocate - take an active role in your care and treatment.

Build a support network - You don’t have to go through this on your own! Make 2nds Count, along with many other resources/charities, are there to support you every step of the way.

Look after your mind as well as your body – there are lots of resources to help you look after your wellbeing. Yoga, breathwork, mindfulness and relaxation are just a few ideas.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Lots of hospital visits which is an hour away by car….very stressful as the parking is a nightmare. Living with some brutal side effects which is not pleasant. Knowing there are not many treatment lines and eventually no drugs will work so it is very scary knowing that this diagnosis is life limiting.
Waking everyday with the knowledge that the cancer is never going away.

What advice would you give to someone newly diagnosed?

Take time to digest the diagnosis and all the different emotions that come with it. Eventually you will accept the situation and feel more comfortable once a treatment plan is in place. Get emotional support if you need to.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Have had to go part time as a teacher due to ongoing side effects of treatment. Constantly fatigued, anxious and depressed. Sick of hospital appointments and treatments. Feel isolated; no one gets how tough it is to live in my body and mind.

What advice would you give to someone newly diagnosed?

Advocate for yourself. Don’t take no for an answer if you feel something isn’t right. Keep talking - don’t bottle up your emotions as this can be as toxic as the disease itself. Ask for help, this is not something to go through alone - it takes a village. Try to think of this as a chronic illness that is treatable. Try to live in between the scans in the best way that you can!

Time for diagnosis:

No gp involvement

How does secondary breast cancer affect your life?

Had to give up fill time job. Registered disabled. Pain, mobility affected, skin problems; multiple hospital visits and 3 weekly targeted therapy plus regular scans.

What advice would you give to someone newly diagnosed?

Try and take it in slowly. Be kind to yourself. Reach out for support. Accept offers of help. Be your own advocate. Try not to compare as every patient is different.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Get tired, can't make plans to far ahead,

What advice would you give to someone newly diagnosed?

Don't think this is it im going to die soon, take one day at a time, and do what you want to do

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I tend to live my life in 3 month blocks bouncing from one CT scan to the next in a haze. You never know whether your next scan will show progression or not and being tripple negative, which is an aggressive growing cancer, we know there are fewer streams of treatment for us.
My tripple negative cancer is unusual in that it has been very slow growing so far. But my oncologist tells me that at any time there could be a spurt of growth, which could haver very critical results. We know that 2ndry breast cancer is incurable and is ife limiting so we all do everything we can to live as full a life as we can. But the worries of cancer never go away and the treatment never stops, unless you're lucky enough to have a period of stability, when the drugs stop and you dare to feel normal again, just for a little while.

What advice would you give to someone newly diagnosed?

Don't Google... you will be extremely tempted to but please try not to. Statistics are out of date as soon as they are published and really don't reflect the true picture. Statistics are just that, statistics and you and your cancer are not a statistic. Everyone is unique and so is your cancer and how it reacts to treatment.
Reach out for support. Ive accepted pretty much everything that was offered from counselling, to aromatherapy, mindfullness workshops, art therapy and a wonderful Secondary Breast Cancer Group at my local MacMillan centre. I've also joined a number of groups on facebook which I've learned so much from.
Be kind to yourself, take each day at a time and spend time with family and good friends

Time for diagnosis:

In hospital for other diagnosis

How does secondary breast cancer affect your life?

Continuous pain. Fatigue. Nausea.
Difficulty walking. Hair thinning. 2 to 3 monthly visits to hospital. Swollen legs.

What advice would you give to someone newly diagnosed?

Celebrate each milestone. I use to have a treat after each month of treatment, to congratulate myself ????

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

For the first year after diagnosis I still managed to work but as time has gone on I struggle with extreme fatigue, constant pain, metastatic to bones and brain fog which means the intense Sales position I held was no longer tenable.

What advice would you give to someone newly diagnosed?

In the words of my GP don’t look at the past you can’t go back to your previous life, try not to look too far forward ( I planned from scan to scan) live in the present, enjoy the moments and make memories.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

It has totally destroyed my life as i knew it. I cant do most of the things i used to be able to do with my children.

What advice would you give to someone newly diagnosed?

Just breathe, it takes a long time to be able to come to terms with a Secondary diagnosis. But, you will get there!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

So many ways - from frequent hospital appointments to fatigue, difficulty in planning holidays or trips, anxiety waiting for scan results, changes in treatment - the list goes on!

What advice would you give to someone newly diagnosed?

Try to stay positive, join groups on line and in person to talk to people who are going through the same thing. There are so many inspirational and supportive people out there.

Time for diagnosis:

I was diagnosed with primary in 2020 and a routine CT scan showed secondaries to my lungs but I didn’t have any systems of a secondary cancer

How does secondary breast cancer affect your life?

On a whole life isn’t too bad- I had to make some adjustments- I wasn’t able to continue to work full time but manage a part time job- I get tired easily but I just make sure that I take time to rest when I can and not to push myself too hard or too far

What advice would you give to someone newly diagnosed?

Don’t focus on the diagnosis- go out and live life. Do the things you want to do, make memories and enjoy every minute. No one knows how long we are here for so just enjoy it

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I cannot work anymore had to take retirement on ill health grounds. I did not have a lot of pension so money has been an issue. The minefield of trying to apply for benefits when not well is a nightmare. Luckily, Macmillan helped me with a grant. They applied for the pip for me and blue badge. They also helped get me in support group for ESA..I still have to try universal credit but Macmillan advised CAB for that.
Physically, I am not able to walk independently requiring walker and scooter. I am unable to plan or take a holiday as not sure where to start...and around all the appointments.
SBC absolutely changes your life.

What advice would you give to someone newly diagnosed?

Please get help from everybody around depending what is available in your area. Day by day.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Initially it affected me so badly mentally. I had no knowledge of SBC so my first reaction was that I didn’t have long to live. Almost 4 years on I live life to the full. The side effects of medication were tough at the beginning, however I am tolerating them much better now, although I would still have bouts of fatigue. I was lucky to be able to take ill health retirement from work, I can honestly say that was the best thing I done. I’m as busy as I ever was, I have got involved with community projects and I’m chairperson of my sons schools PTA! Most importantly I’m here for my family, and I’m getting to spend quality time with them, but I can have my rest time too when I need it. SBC has changed my life, but in a crazy way, sometimes for the better! I am doing what I want and not putting work first!
Thankfully my treatment is keeping everything stable, so as long as that’s the case I’ll continue enjoying my life.

What advice would you give to someone newly diagnosed?

Talk it out!! Don’t think you can do this on your own. Take all the support available to you. Counselling, therapy whatever works do it! Try and stay positive but if you need to cry, shout, or scream that’s ok too. Support groups can help and you can be involved at whatever level you’re comfortable with.
Share any worries with your team, straight away. They’re there to help and support you. Don’t be on your own!

Time for diagnosis:

I was diagnosed with my primary breast cancer August 2022, 5 days after my initial GP visit. Then during chemotherapy treatment, pain in my left leg led to scans which then identified bone and liver metastases

How does secondary breast cancer affect your life?

Being only 37, it has taken away my chances of ever being a mum. One because I would need lots of oestrogen to do this & that is what feeds my cancer, and two, because really, how could I choose to bring a child into the world where I dont know how long I have to live? In that respect, my dreams of what the future should have been like are no longer the same e.g. being a parent, a grand parent - growing old. I can only really enjoy life in the present. I don't really have any 'big' future dreams as you can't plan ahead too far. It's tough mentally & emotionally.
I can't bear to think of what my nieces & nephews will achieve in the future, my friends' children, even what my friends will go on to do as they age. Not because I am selfish, I just find it too sad that I may miss it all.
It has impacted negatively on my relationship, as ultimately, my partners future is likewise uncertain. He struggles to cope at times because of the impact of my diagnosis on not only me, but on himself. Especially if I feel tired or sore. And of course, because of the constant fear that medication will no longer work and he will lose me.
I feel lonely at times despite speaking to many woman online who share my condition. This is because I can't really be fully open about my worries with those around me I love (e.g. my partner, family, friends) because of how raw the emotions I feel are and how much I know they would hurt to hear them.

What advice would you give to someone newly diagnosed?

Reach out to groups of people who share your diagnosis, that way you can be open to discuss anything regarding your diagnosis, because everyone feels the same and it can be done without fear of hurting anyone close to you. Don't bottle emotions up, allow yourself to feel them.

Who and how has SBC affected you?

My Mum who is my hero and best friend was diagnosed nearly 3 years ago. Life changed immediately as there’s a grief that can’t be broken, control not cure was quickly understood , but also a new found challenge to make the best of every situation.
Im a person who likes to know as much information as possible - the good, the bad and the ugly! So I’ve done a lot of reading about SBC, mums treatments, symptoms and prognosis. This helps me to feel like I understand her journey a little better and we can ask healthcare professionals or other experts the stuff we can’t find online.
Some days it’s about physically caring for Mum, others it’s making the best memories and everyday is about letting her know how loved she is.

What additional support do you need?

I love the purpose Make 2nds Count has to educate more about secondary breast cancer. The amount of people who learn about Mum and say ‘she’ll beat it so many people are cured from breast cancer these days’ is proof that there’s a gap but being able to inform them of the SBC facts and share M2C website makes me feel I’m doing my part.
The hardest thing when supporting someone is being strong but having no outlet. For those of us supporting someone we love - it’s okay not to be okay but how do we get support? Would be great to have an opportunity to meet people in the supporting roles and talk freely about our struggles and share coping mechanisms. There are individual support opportunities through other charities but I’d love to meet people who fully empathise with the SBC journey I’m on.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

It was a shock as I was not diagnosed by my gps who dismissed my skin lesions on two occasions, despite me raising concerns about previous breast cancer 10 years prior. I didn’t even know you could get breast cancer in the skin. Life changes forever, the hopes, dreams and plans you have for the future are gone in an instance. There was a lot of tears.

What advice would you give to someone newly diagnosed?

Take you time. When you are first diagnosed you think you that is it, the good times are over. But as you slowly get your head around treatment plans and how they might affect you, you realise life doesn’t stop and there is hope

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

The medication I’m on leaves me feeling tired. The side effects range from diarrhoea, sickness loss of appetite.
The constant worry, scanxiety fear every three months. I am on my first round of treatment so hopefully have lots of other options available to me.
It’s currently in my lung. So I get breathless easily.
Due to Chemotherapy I had during initial diagnosis I was pushed though medical induced menopause. And suffer from joint and nerve pain on my feet.

What advice would you give to someone newly diagnosed?

Stay positive, live l life to the full. Try anything you can that will help fight the cancer. I read books search good things to eat and drink that could benefit me.

Who and how has SBC affected you?

My mum - passed away from secondary breast cancer in April 2023 age 63. She had been battling secondary for several years.
It’s hard to stand alongside someone on this journey when you know the inevitable will be coming - and knowing the control is out of your hands

What additional support do you need?

None

Time for diagnosis:

Hadn’t seen GP. Was diagnosed in A&E after being admitted for suspected appendicitis.

How does secondary breast cancer affect your life?

It affects my relationship with my husband because he feels helpless to help me when I’m struggling physically and I feel helpless to help him when he is struggling mentally. The weight of the fear, worry and unknown bears down hard sometimes and we need to put all our energy into managing that and keeping as positive as possible for our kids and on cherishing the blessings of every day. We wouldn’t have it any other way, but it doesn’t leave much left in the tank for each other or for anything else sometimes.

What advice would you give to someone newly diagnosed?

The most powerful weapon in your armoury is positivity and mental strength. Take each day a step at a time, focus on what you can achieve and enjoy that day - not on the things that you can’t. Try not to think any further ahead - but when you feel physically and mentally well enough, do get your affairs in order so that you can put all that to the side and focus your energies and mental strength on living, loving, laughing and thriving.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

All day every day like a black cloud, realisation that life how I’d planned, hoped and dreamed will not be. It’s seeing the sadness and fear in my children’s eyes when I have a bad day. It’s my husband living in denial. It’s agony from compression on my spine, it’s sickness,diarrhoea and constant exhaustion from medication side affects. It’s not being able to plan in advance because I never know what sort of day I’ll have until I wake up. It’s sadness that I won’t go wedding dress shopping with my daughter or see my future grandchildren.
It’s like being robbed of the future I lived my live for. It’s the stress of delays on results or appointments or treatment.
It’s living with all of the above yet desperately trying to be positive.

What advice would you give to someone newly diagnosed?

Be kind to yourself, have patience, take things slower. Take a day at a time if need be an hour at a time. Don’t pretend to be ok. Do all you can to reduce stress. Eat well, sleep well , improve daily habits if something or someone doesn’t make you feel good cut it out of your life,
Time’s too precious, put yourself first

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Side effects of medication I take mean that I had to resign from my job. Life is very different but thankfully I’m blessed to still be on my 1st line of treatment. Original prognosis given to me was 2-3 years maximum. My first grandchild is due on 7th August so I’m hoping to be around for a lot longer yet!

What advice would you give to someone newly diagnosed?

Hard as it is you can only live one day at a time. Don’t look backwards to the past or forwards to the future. Enjoy the present as each day is a gift. Above all just stay positive despite your circumstances.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

After reaching my 5th year and 4th line of treatment, I am struggling pain wise aswell as mentally, having brain fog and generally dealing with side effects. I can't do simple tasks like opening a bottle of water due to pain. I am not working now as I'm too tired after a 4 hour shift.
I am shocked to be told by well meaning people that i will beat this like I beat it 19 years ago...people really don't know there is no beating secondary stage 4 cancer. It can be a lonely frustrating path sometimes. Even my husband loses his temper when I cant give a quick answer to his question, because my brain and mouth arent in the same gear. I wouldnt wish this disease on my worst enemy.
I really try to be positive and carry on with life as best I can, but having to wait another year and half for my pension is limiting.
I suppose in one word, depressive is how it affects my life.

What advice would you give to someone newly diagnosed?

Talk to anyone who will listen and that understands. Find help, dont rely on it coming to you.
Ask questions, dont be fobbed off.

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

It feels like living with a ticking time bomb, knowing that it could explode any time whilst trying to live as 'normal' a life as possible. My side effects include poor sleep and joint pain but I'm incredibly grateful for the advances in treatment which help women like me live well, for longer.

What advice would you give to someone newly diagnosed?

Take time to gather information but only from reputable sources, such as make 2nds count, Cancer research and Macmillan. If you have a secondary breast cancer nurse, speak to them, get to know them, they are there to support you, emotionally and clinically. Be kind to yourself, shock, fear and anger are all understandable responses but, in time, I hope you will find a wsy forward that feels manageable for you. Finally, please reach out to the SBC community for advice and support but don't lose sight of your individuality and uniqueness, we mighr share a diagnosis but we are all different too.

Time for diagnosis:

No visit to GP

How does secondary breast cancer affect your life?

Negatively; physical changes from sites affected and treatment. Fatigue. Limitations on activity.
Mentally: worries about future, family, lack of treatment options and uncertainty.

What advice would you give to someone newly diagnosed?

The first few weeks are difficult, just adjusting to the news and waiting for treatment plans.
You will have a ‘new normal’
Living an independent, positive life is still achievable.
Don’t look at Dr Googles statistics as they are likely to be outdated.
Use areas of support available such as Make2ndscount.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Secondary Breast Cancer affects me in several ways; mobility can be severely hindered to the point of immobility as the result of metastatic bone cancer, a secondary of my primary breast cancer. This has resulted in a spinal vertebral colapse(broken back), which initialy immobilised me until sufficient healing and pain relief enabled a return to movement albeit with constant back pain.
The physical effects result in loss of sleep and ultimately a loss of quality of life. The endocrine drug therapy which is inhibiting hormone production has left me with a total loss of libido and hot flushes. These side effects can be considered mild in comparison to the more severe potential side effects. The emotional effect is something that is difficult to come to terms with, even for a realist like myself, to know that this is incurable, every change in symptoms makes you think that the final turn is getting closer.

What advice would you give to someone newly diagnosed?

If you have had primary breast cancer, do not dismiss an ache, pain or a sudden reduction in mobility as a sign of getting old, early medical attention may improve your life.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

It affects every day.
This ultimately means my life has completely altered- i regularly attend hospital and most months wait to hear what has changed - whether my body is coping with the medication, whether the treatment is no longer working or whether the cancer has spread further.
It is a massive game changer - it affects how I think and feel every day, knowing i dont have the future i planned for, grieving for the family i wont meet and knowing that i will die much sooner than my friends and family.

What advice would you give to someone newly diagnosed?

It varies so much for each individual- you cannot guess how someone else will react. What helped me was finding key people you can talk to about it. Being honest, not hiding feelings and finding a group who understand what you are going through and just “get it” - such as a BCN support group

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I can’t work, ill health retired at 43
Fatigue
Tired all the time
Have to plan everything - can’t be spontaneous
Aches and pains from treatment side effects
Scanxiety
Feeling of doom when I wake up
Can’t have a big night out these days
Financially always having to think about money
Thinning hair and eyebrows

What advice would you give to someone newly diagnosed?

It will be ok, you will stop crying everyday and the fear will settle.
You will fall into a new normal, life won’t be the same, but it will be ok, you will smile and laugh again
I promise x

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I definitely don’t have the same energy as I used to have. Trying to keep some normality but it’s one round of appointments at the moment. Hoping to be able to return to work part time.

What advice would you give to someone newly diagnosed?

Seek support from groups relating to your cancer. My follow up support was non existent when I needed it the most so contacted brain tumour support uk. They’ve been brilliant providing support, councilling and financial advice too. Keep busy and try not to think and dwell too much if possible.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Having treatment restricts my ability to do the things I used to have the energy and inclination to do, such as playing with my kids, exercising and just living a “normal” day. Some days I’m so exhausted I really can’t do much for myself at all, let alone anyone else. I’m currently on long term sick with my job as a teacher and unsure if I’ll ever be able to go back as I need to be so careful about contracting viruses and infections. There’s also the mental load of the illness, knowing that I will have a shortened life expectancy and probably won’t see my kids grow up breaks my heart every day. All I want more than anything is for them to know that their mummy loves them and would do anything to have more time with them.

What advice would you give to someone newly diagnosed?

Meet up with others in your shoes, it really helps to speak to people who understand and to see the lives they are able to live. Also take the opportunities you can through charities to have fun!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

takes me 45 mins to get dressed every morning. it effects everything i do, travelling to hospital ever 3 weeks for chemo sometimes having to rely on people to take me.

What advice would you give to someone newly diagnosed?

keep positive,
look at specific secondary fb groups not google!
join a local secondary support group so you can share stories. & help each other

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I am blessed to be doing well on my first line of treatment, 21 months in , I drastically reduced my working hours to 2 days a week and try to live a relatively normal life although the fear and worry never goes .

What advice would you give to someone newly diagnosed?

I found the first few weeks an absolute whirlwind of appointments and was terrified, once the treatment plan was sorted it calmed down and I trust in my Oncologist to do the best for me, most days are relatively 'normal' but you must allow yourself the bad days too . I find it much easier to my share my journey with whoever will listen ,some don't, you will know whats best for you . X

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Treatments have slowed me down a lot. Fortunately I am retired so life is not so hectic! Taste changes have affected me as I was a foodie and fond of a drink or two. Now I rarely touch alcohol (to the amazement of my family and friends!) and quite picky about food. I put on my ‘smiley’ face when seeing friends or am out and about so really only my husband knows how I am day to day.

What advice would you give to someone newly diagnosed?

Hopefully you have a strong supportive family and friends around you. Don’t waste time with others. Live each day as it comes as every day will be different on treatment. Go out and enjoy your life as much as possible and treat yourself regularly…..you only live once! And don’t save anything ‘for best’…..use it, wear it!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Fatigue is something I've learned to live around. Everything has to be planned around treatment and scans

What advice would you give to someone newly diagnosed?

Breath! Ask questions and join FB groups which help immensely

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I am lucky in the way that I now have low deases which is managed by targeted chemo, but the threat that hangs over me and my family is very real. I have now been living with this deases for 5 years and came to the realization that each day and each line of treatment will rob me of my physical ability to do the things I love. I can no longer run or sing as I used to before and get fatigued to a point of inactivity for days. I can't sleep, hot flashes are horrendous and in the last 4 years have not slept in my own bed.
If I was diagnosed when I initially went to my gp I would have had treatment for a primary but if I hadn't persisted and got a diagnosis I would be dead now. So in a way I am grateful to be around still and have seen my baby boy into years 3 at school. He wmhad just started nursery when I was diagnosed

What advice would you give to someone newly diagnosed?

Take each day as it comes, I am pragmatic so I keep a diary of symptoms when starting a new treatment so I can plan my life around them.

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

I’ve had to give up my job and I take a lot of painkillers to get through the day!!!! It affects every aspect of my life, whether I have the energy to do the housework, walk the dogs, see friends etc. Because I’ve given up work I’m relying on benefits and I live in worry that someone will decide I’m not ill enough and will take PIP away from me, which means I’d have no car!!! It’s affected me positively in the respect I don’t get stressed so much, I’m at peace with dying whenever it happens, I’ll take chances and do the things I want to do. I also think it’s made me a better mum because I appreciate the time I have with them more

What advice would you give to someone newly diagnosed?

To stop and breathe to try not to go into panic mode, even though you will!!!!
To remember that it’s ok to feel how you feel but talk to your family and friends so they feel they can talk to you about their fears too.
The biggest thing is to remember that everyone dies and no one knows when it will happen. We are the same as everyone else in that respect but we are lucky in that we get to appreciate now rather than wait for the perfect moment

Who and how has SBC affected you?

My mum, she has now passed away just 4 weeks ago. She had breast cancer 33 years ago when I was 5, her secondary (metastatic breast cancer) in her bones was only found 11 years ago!! She was told in 2013 upon her secondary diagnosis that she could have 4-5 years, she lived for 11. She fought and battled those 11 years so that she could see our weddings, babies, to have more time with us all. She was incredible.
My sisters, Dad and I cared for her right until the end at home where she wanted to be.

What additional support do you need?

There needs to be more awareness of secondary breast cancer, more support for the patient and the families dealing with it. My mum became very isolated as her cancer worsened as she was scared that her bones would break etc if she was out. It would have been amazing for her to be able to feel part of a community, someone to share her worries and thoughts with that wasn’t so closely connected. And for us as the family support in how to help her, how to support and listen to her and actually have something helpful to respond with.

Who and how has SBC affected you?

sister

What additional support do you need?

online groups and in person meet ups

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It all still feels unreal.
I feel the healthiest ive felt in a long time despite being on treatment now for life.

Everyone keeps saying "but you look so well"
Im a nurse and currently trying to navigate going back to work, I feel this disease has taken enough from me im not ready for it to take my job too.

Its like living with a gun to the back of my head at any moment the trigger could be pulled and my life will be over.

What advice would you give to someone newly diagnosed?

Keep active, keep tallking, keep making memories, keep telling your loved ones you love them, keep fighting, keep faith, keep hope.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It has turned my life upside down. Adjusting to side effects of treatment has been very hard. I have had to take sickness leave from work and I am currently finding it difficult to accept that I probably won’t be able to go back. It was particularly hard telling my family and I feel like I am letting them down because I don’t have the energy to do the things I used to. My daughter had my first grandchild 2 months after my diagnosis and whilst that has brought some much needed joy into all our lives I do feel sad that I can’t help out as much as I would like. He passed his first cold onto me and I ended up in hospital for 3 nights with neutropenic sepsis. We can joke about it now but it did highlight that my life will never be the same and I am desperate to stay as well as possible for as long as possible so I can hopefully be with him on his first day at school etc. Living with uncertainty is so hard . As is trying to cope with the fear of what may be to come

What advice would you give to someone newly diagnosed?

Seek out support in your local area. Connect with ladies in the same situation. Whether that is online or face to face. Being able to ask questions and share your worries with those that understand is invaluable.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have been stable on first line treatment for almost 4 years. Whilst I do live a relatively normal and active life, SBC is definitely a big part of what has become my new normal.
Physically I am more tired than I used to be, particularly at the end of my treatment cycle each month. I suffer with joint and bone pain at times as a side effect to the treatment, I try to stay very active which helps but cannot walk the very long distances I used to be able to.
I also find it harder to concentrate on tasks than I did but am lucky to be able to work flexibly and from home a lot of the time.
Emotionally, the diagnosis is with me all the time. I am a positive person and try to live life to the full, however living with an uncertain future is hard.
I live from scan to scan as we all do, it can feel relentless, having the scans then waiting for results. It feels like I press the pause button on life then when I get the results I can press play again.
I worry more about my family, how they will cope when I’m no longer here and whether I’ll be here to share the important life milestones with them.
However I am here, living a good life, 4 years after diagnosis and I make the most of every day.
Time with family and friends is so important to me and I really do cherish all of the lovely times we spend together.
I hold on to hope, hope that I can live with this disease for many more years, that there will be more research and treatments for us all.

What advice would you give to someone newly diagnosed?

Hold onto hope, your life is not over, there is still a wonderful life to be lived.
Try not to google too much, find support and hope from the secondary breast cancer community.
Be gentle with yourself, this is a truly devastating diagnosis and you need time to come to terms with it, take one day, even one hour at a time.

Time for diagnosis:

Self referred back to Oncologist. Ultrasound and biopsy within 2 weeks of initial appointment

How does secondary breast cancer affect your life?

It is a constant readjustment of expectations. I am now on 3rd line of treatment after 2x chemo and palliative radiotherapy.
My recurrence was initially in the lymph nodes and then there was a rash. I was assured it was just a rash and then it bubbled and erupted. I don't think anything prepares you to see your breast bleed in the shower when you change your dressings. It wasn't a rash. It was a skin met.
Just when you think you've settled into a routine and know when your good days or weeks are, you get confident to make plans for outings , then another side effect starts.
I've a picc line, which means you can't swim, have to be careful in the bath. 1 cycle in, my hairs gone 4 cycles in and I've lost my eyelashes. Random dizzy spells, dropping things, do I need to stay by the loo?
Its the not knowing what's going to happen with each subsequent treatment cycle.
Is it working - no scan yet.
If it stops working what happens next - is there another option?
Other people ask how many cycles are you having - they don't seem to get that this is it, day1 day 8 start again on day 22 and repeat and repeat - for life or not...

What advice would you give to someone newly diagnosed?

It's not the immediate death sentence you initially think. Treatments are better and you can live well and longer with a secondary diagnosis.
Be prepared to advocate and challenge whats on offer, you need to be comfortable with your treatment plan to cope with it.

Who and how has SBC affected you?

Mum - Supporting her through her diagnosis and treatment and ensuring a good quality of life.

What additional support do you need?

Support networks are a lifeline to patients but would also be beneficial to families/friends to learn how best to support the individual. More availability in local areas would be beneficial. Thankful everyday for Make 2nds Count and everything they offer.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Pain and fear.
In bones so in pain, pelvis brien by walking. Now a fear that it can happen at anytime.
Feel isolated, not very good at joining face to face groups. Try to live life to the full. Spend summer in Sweden at holiday home, winter in England. Fly home every 4 weeks.

What advice would you give to someone newly diagnosed?

Listen to your body. Remember everyone is different. Anger at first will pass, realty is living life to the full. Learn to enjoy each day

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

My life is now centered around my SBC. Appointments, in all different parts of tge country. It has impacted not only my marriage but my now 5 years relationship. Im still me but a different me.

What advice would you give to someone newly diagnosed?

Dont google. Find a support group (like M2ndsCount or online or in real life.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I am still adjusting. I’ve changed my diet massively, and I’m much more grateful for what I have now.

What advice would you give to someone newly diagnosed?

Don’t think this is it my life is over. It will get better and easier. I’m on day 5 of radiotherapy and on cycle 2 of treatment. Only side effect niggling me is dry eyes, so all good. I am positive and happy, and I advise you stay that way as much as you can. Accept company from friends.

Time for diagnosis:

2 years

How does secondary breast cancer affect your life?

From every pain to every last side effect, from every tear to every mood swing, from every night sweat to every toilet episode, from every day crippled with fatigue to every days anxiety, from every worry of how long? to every scan anxiety, from every blood test to every injection into my belly, from every tablet I take to every scanner I lie in, from every sleepless night to every fear of progression, from every stable scan to the positivity of fighting on, from every raising of awareness, to every person’s ignorance, from mostly looking absolutely fine to the world not really knowing the struggle, from waking in the morning to going to sleep at night I CARRY THE BURDEN OF DYING yet through my children’s eyes I see the need to carry on living ???? from the finding of your new normal to the belief that you can stay stable, from the hope of new treatments to the prayers of a cure ????

What advice would you give to someone newly diagnosed?

The devastation will lift, your new normal will be found and you can enjoy life again and many do very well on treatment for a long time and you can too!!! YOU HAVE GOT THIS!!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Thankfully not a lot. Now I am on a treatment plan I can live a relative normal life. Planning holidays are not as easy and I get tired more than I used to. However I am grateful for the team that supports me. I am a very positive person and want to support others going through what I am bit are not coping as well.

What advice would you give to someone newly diagnosed?

Stay as positive as you can. Don’t read stories on google or look at statistics. Most are out of date. Every case and person is very different. There are some amazing drugs out there. Use the services available to you. Trust, believe and have hope.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I feel it has stolen happiness from happy moments and replaced it with a sadness, a mourning of what will or wont be.

It has put fear into me when I look at my daughter and imagine the pain she will face for the remainder of her life and my inability to control that or be here to console her.

It has stolen the hopes and dreams of expanding our family, it has put sadness in the eyes of my husband.

It has scared my family and friends.

But, even in the darkest of times we have found hope and laughter and I genuinely hand on my heart feel like I am living more than I ever did before.

I treasure simple moments. I make memories from the smallest of acts. I love with all my heart and hope the people I love can feel that. I don't stress about the small stuff anymore.

I appreciate being alive and what i have in my life and how lucky I am.

What advice would you give to someone newly diagnosed?

Dont panic. Its not the end...not now.
Take some time to process things, keep some information private. Not everybody needs to know everything and you dont have the answers to all the questions people will have. Protect yourself.

It will be ok xx

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It affects me every day. From the daily chemo, the fatigue, the scars, the grief that you internalise and try to keep a lid on, the what ifs, the guilt of some how having caused it, the guilt of the grief I will cause when I leave. I could go on…

What advice would you give to someone newly diagnosed?

Take time to process, tell people when it feels right for you. Take one day at a time and don’t beat yourself up for not being able to do what you thought you should be able to do. Focus on the small wins and take it from there.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

My life is no way the same now got last 9.5 years ..
Being on treatment fot last 9.5 years and all the sidr effects really put me down every 3 weeks.
Still need to live life to the fullest thats what cancer tought me

What advice would you give to someone newly diagnosed?

Be positive
Be lively
Live life and enjoy every moment
Don't let pain overtake the beauty of everyday life

Who and how has SBC affected you?

My younger sister aged 39 was diagnosed with secondary breast cancer in 2023. I guess I support in any way I can , that can mean just being in stand by in the hope this day is the day she has energy to go for a coffee or have a chat. We chat about what’s to come . But the support is ever changing when you have breast cancer . It’s hard to navigate on times as I know she and I are both also want to protect those we love. When you love someone you don’t want them to see your pain so I know there are times we kinda keep a little distance as it’s so overwhelming. I support her by sharing info in breast cancer, on sharing info on drugs that can help but are not available for her as we will live in Wales. Funny thing is as scary as it is on times , cancer has also given us some beautiful gifts. You share more, love more.the small stuff doesn’t matter … overall I just support her by being her big sister .

What additional support do you need?

I suppose help on times on what to say …

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Quality of life having to accept you are not as flexible with yourself and your activities as previous. Mindset changes understanding you will have highs and lows. Readjusting working schedule and understanding the good and bad days.

What advice would you give to someone newly diagnosed?

Try not to panic take a step and reach fir support. Dont believe statistics you read on line. Tryst your medical team and treatment plan

Who and how has SBC affected you?

My mam, Carol, was diagnosed with secondary breast cancer in April 2024. She was diagnosed with primary breast cancer in 2020 and after a mastectomy, 18 weeks of intensive chemo followed by 30 radiotherapy sessions we received the news that she was cancer free. Finding out that the cancer has returned has turned our world upside town. She tried a hormone suppressor treatment for 3 weeks however ended up in hospital for nearly a month in an almost septic state as she could not eat or drink without being instantly sick as a result of the treatment. My mam is on palliative care from home, fighting every day, but as a 22 year old girl having to watch my mam suffer day in day out knowing there is no cure breaks my heart in a way I did not know was possible.

What additional support do you need?

I am very anxious about the future. I would like to talk to someone about how I will cope with my grief and how I will be able to support my Dad when he loses his partner too.