Your Stories

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It’s affected my confidence
It’s made me scared , low , sad, fearful , anxious about the future
It’s affected my weight and my body confidence
I have stiff achy joints and feel tired
I have to restrict my days in how much I do
It’s affected relationships within my family
I also had to give up my job

What advice would you give to someone newly diagnosed?

The early days of diagnosis and starting treatment are the hardest
I promise it does get easier over time
It never goes away but it does get easier
Don’t take any notice of stats on google there are no new statistics out and treatment options are getting better and better
Listen to your oncologist but also do your own research
And it’s ok to have a bad day and cry but then pick yourself up and have a better day tomorow

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:

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?

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:

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:

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:

3-6 months

How does secondary breast cancer affect your life?

SBC affects every aspect of my life. I try my best to live a full and fun life but there isn’t a day that I don’t have to think about SBC or deal with the consequences.
I don’t look like me in the mirror anymore, I’ve lost my hair and what is growing back is damaged by radiotherapy and medication. I’ve put on weight and have aches and pains and feel much older than I am from a chemically induced early menopause. I was 40 when I was diagnosed and I lost my fertility, I was successful in a job I loved which I’ve been forced to give up and I’ve lost my driving license and with it much of my freedom.
I think of the friends and people I followed on social media that have died from this horrible disease. I miss them and I feel grateful to still be here.
I try not to put things off now, but to be honest the side effects of the medication often dictate what I am able to do. I try and live in the present and be grateful for all the positives in my life and people and animals around me that I love.

What advice would you give to someone newly diagnosed?

SBC is not one disease it is a collection, and what one person’s experience is will not necessarily be yours, even if you have the same subtype.
Lots of people live well with SBC.
Appreciate when you feel well and do what you can when you can.
when you are going through hard times
Don’t loose hope, treatments are
Improving all the time. And always know there are people out there who understand what you are going through and want to help you through it x

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.

Who and how has SBC affected you?

My mother had it and fought for over four years of highs and lows and multiple treatments

What additional support do you need?

I would like to help raise awareness of what secondary breast cancer really means for patients and their loved ones

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Since being diagnosed with metastatic tripple negative breast cancer in December 2018, I've been on 4 different chemotherapies. The first had no effect whatsoever, which is scary because there are fewer lines of treatment open to those who are tripple negative. However the next two chemos I had did work, the first for 7 months and the second for 5 months. I'm now on a tablet form, which is somewhat easier to manage and I feel fewer side effects with.
However, since diagnosis I feel I'm living my life in 3 month blocks, living from one scan result to the next, constantly worrying whether it has grown more, or spread to more parts of my body.
Mine has spread to my lungs and although I have no symptoms yet, like a cough, shortness of breath or pain when taking deep breaths... I do get anxious at the slightest twinge, ache or pain, convincing myself its spread further.
Life is a constant whirl of dashing from one hospital appointment to the next and I've not even mentioned the surgeries.
Since being diagnosed with secondary breast cancer, I have also been diagnosed with Atrial Fibrilation and Type Two Diabetes (which I am trying to reverse through diet and exercise).
People always think that cancer patients drop tonnes of weight during treatment, but that's not always the case. I've put on at least 4 stone over the years, mainly due, I believe, to the huge amounts of steroids you have to be on to tolerate the chemo drugs.
Thankfully the chemo I'm on currently doesn't require steroids, which I am incredibly releived about, as I am now managing to lose some weight at last.
My diagnosis doesn't only affect me but also my family. Luckily I'm not married and don't have children, but my Mum, sister and brothers do suffer. My sister has been my rock. She's been with me all the way on this journey and this has affected her mentally just as much as its affected me. We're very open with eachother and have both learned so much about cancer and ourselves and how resilliant we are.
Living with secondary cancer isn't easy, but at least I'm living... thanks to my Doctors, the NHS and my wonderful family and friends.

What advice would you give to someone newly diagnosed?

Whatever you do, don't google... everyone's diagnosis is different and statistics don't mean a thing!
Ask for help when you need it, and take advantage of all the wonderful support groups out there.
If you can, join a secondary breast cancer group. My local Macmillan run one and it's brilliant. The ladies there are just like you and are so supportive and knowledgeable.
Keep your eye out for new drugs coming out and discuss them with your oncologist. I heard about a new one for TNBC through a Facebook Group for Secondary BC. My oncologist has now lined this up for my next chemo option as and when needed.
Finally keep the faith, keep positive and live life.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

It makes me sad when I think of all the things I'm going to miss out on because my life will be cut short,but I can't allow myself to focus on that too much. I try to think of all the things I'm still well enough to do and be grateful for that. Keeping it real though, some days that's easier to do than others.

What advice would you give to someone newly diagnosed?

Allow yourself to grieve and acknowledge that this diagnosis is life changing for you and your family and friends. Reach out for support when you feel ready, there are lots of us out there who have been where you are now. Don't be afraid to ask for help from family and friends, you are not a burden to them, they will want to help you in whatever way they are able to navigate this new stage of your life.

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?

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”.

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:

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:

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:

3-6 months

How does secondary breast cancer affect your life?

Still quite early on but full of swaying fear, trying to be positive. Learning the language, the norm, the unknown, terrified I won’t get to see my children grow up. Feeling like this is life now, all side effects and feeling rubbish. However, hoping that some normality may return but being realistic too. It’s so hard.

What advice would you give to someone newly diagnosed?

Find and collect positive stories from other women/people.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

First 4 years were good. Flipped from E+ to TN. Been on IV chemo since June 22. Weekly visits x 2 and frequent scans. Mobility poor after hip replacement due to metastatic disease plus neuropathy from chemo. Frequent failures of ports and knackered veins. Too many scans with the anxiety associated. Worry for my two young adult sons. But pluses are more time for me. Learned to paint and crochet. Made new friends from the SMBC community. Have a different outlook, appreciating more of life. First family dog too.

What advice would you give to someone newly diagnosed?

Try not to panic. Take someone with you to oncology appointments. Realise there are multiple treatment lines, one failing isn’t the end. Your next treatment may be the one. You can live a good life with this disease. Do what’s right for you and your family. Tell them as much as you want to. I protected my boys as my rationale was I could be lucky and live a long time so why worry them. Use your nurses if you’re lucky enough to have them. Maggies and MacMillan are good as well as Breast Cancer Now. Finally you and your illness are unique to you. Remember we’re all travelling through the same storm, just all in different parts of it and in different vessels. You are stronger than you think. So many friends say “ I wouldn’t be able to cope”. My reply is “ you’d have to !”
Good luck.

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 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?

It’s always there in your mind even in days when you feel ok it then hits you.
I was diagnosed stright to secondary breast cancer so it was a massive shock
I’ve just finished a round of radiotherapy.
My side effect from treatment haven’t been to bad and I’m now back to work

What advice would you give to someone newly diagnosed?

Don’t give up hope, live your best life every day surrounded by people that make you happy

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The side effects from treatment affect me daily. My breathing is affected, I’ve had lung inflammation due to one targeted drug since stopped.
I have had many family issues with people not talking to me or avoiding me. This increases isolation and anxiety.
I feel isolated as a male with secondary breast cancer.

What advice would you give to someone newly diagnosed?

Look for a support network asap, if you feel your losing or have lost friends, then to save your mental health, find new friends that do understand.

Re side effects, don’t let doctors dismiss you. You are the expert of your body…never forget that.

Live each day with gratitude, it is a medicine that’s not prescribed….but my god it helps live your new life.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It is the first and last thing I think of everyday. In the early stages you go through anger, denial, despair but now I have got to a point of acceptance and my soul feels lighter for it. Lean on your loved ones, maintain positivity. This is your life now and you need to still live it!

What advice would you give to someone newly diagnosed?

Take each day at a time. Treat it as your chronic illness where you have to manage your day to day symptoms. Reach out to local support groups as you will find people that will understand how you feel. Find yourself a hobby you enjoy! Even if it’s putting the music up loud and having a dance and a sing when no one is watching!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It affects everything especially your mental health, from your waking minute til the time you fall asleep. I’m learning to try and not allow it to control my every thought but it’s all consuming and the symptoms and hospital appointments are constant reminders.

What advice would you give to someone newly diagnosed?

Every emotion you feel is valid, no matter how little you think they are. You are going to experience all emotions so be gentle with yourself. Everyone says they will be with you every step of the way, but you can only really do this yourself, no one else can do the treatments for you so keep strong and listen to your body.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It hugely affected my mental healh at the beginning. I was in a very dark place . Now i havevery stiff joints , i ache and im very tired. I feel relationships with friends and family change. Ihad to give up work so had to find other things to occupy my time . joining facebook groups like M2C really helped for online friendship and advise . The retreat was amazing to meet others who justget it and i have made friends for life . Also a member of A local secondary group and its really helped meeting up with others same situations as yourself. Ive made new friendships which has helped me mentally . SBC has effected my husband and children . They worry abiut loosing me . sBC has also taughtme to cherish every moment , be more spintaneous , grab life and do things that i would never have done before .

What advice would you give to someone newly diagnosed?

The earliest days really are the hardest . Waiting for scans and results . The unknown of what treament you will have and how it will affect you . Once you have a plan in placeand start treatment things do get easier . Mybiggest advise is find your tribe , find others who getit . Join online groups for support advise and friendships and join local groups tomeet inperson . Take all thehelp you are offered and dint be afraid to ask for advise . It does get easier x

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It affects every single part of my life. SBC is like a dark cloud hovering over me all of the time: the constant worry that my 1st line treatment WILL stop working one day. Milestones with my three boys (3, 11 and 15) are now bittersweet - I am so happy to be able to enjoy them but the black cloud is always hovering, trying to ruin them for me.
Having cancer is like having another part-time job. The constant organising of medications, ordering medications, juggling appointments for consultations and scans. I have no symptoms of my cancer apart from a dent in my breast but the side effects from the medications that keep me alive are difficult: joint pain, swollen painful hands and feet, fatigue, brain fog, all things menopause…

What advice would you give to someone newly diagnosed?

Let yourself grieve the life you thought you’d have. Then build yourself up with positivity, find your people, exercise and live the best life you possibly can.

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?

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:

2 years

How does secondary breast cancer affect your life?

Always thinking about the things I'm going to miss out on; seeing my daughter as an adult, retiring with my husband, enjoying the fruits of our labour when the mortgage is paid off.
I have constant aches and pains that never allow me to forget about the cancer as well as being wearing.
Not being able to pre plan things because I never know when hospital appointments are. Not being able to carry on with my life as before because of the restrictions my diagnosis gives (I'll possibly miss out on being maid of honour at my best friend's wedding because I cannot travel to the country).
On the positive side, I am so grateful I have a wonderful family and friends. I have always appreciated and loved my life but it's made me extra grateful. I have also seen how good and generous people can be. I've never had to be on the receiving end of people's kindness and now that I am I am blown away by people's thoughtfulness and kindness.

What advice would you give to someone newly diagnosed?

I live in hope that there will be new treatments around the corner. It keeps me smiling each day and allows me to spend time with my daughter without constantly thinking about the times I miss out on. I know those treatments may not materialise but life is much brighter living with hope.

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:

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?

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?

Being diagnosed with Secondary Breast cancer was devastating. I was 29 years old when I was diagnosed and would never have expected it to happen to me, especially at that age. As a mum to a young son, that has been the hardest part for me. All I want is to be there for my son, to see him grow up and love and support him every day. I hope I get to do that for a very long time.
Seeing my family and friends around me struggling with worry and wanting to help me is both a blessing and a curse. I wish they didnt have to endure it, and I wish I didn’t have to either.
I try my best to be positive, and many days go past where I’m happily living my life. The “normal” days are the best, with my family, my husband, my friends. I soak those days up.

What advice would you give to someone newly diagnosed?

Google isn’t your friend. Don’t google. If you have to look things up, make sure you use reputable sources.
Be kind to yourself, you deserve it.

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

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 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:

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:

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:

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:

6-12 months

How does secondary breast cancer affect your life?

Living with Secondary Breast Cancer is scary and lonely.
Most people close to you do not want to talk about it, most don’t understand it.
I constantly worry about when my treatment will stop working.
I am already heartbroken for my family’s pain and the grief they will endure when I die.

What advice would you give to someone newly diagnosed?

Do not look at the statistics!
Be your own advocate, look after your mind & body.
Make amazing memories x

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.

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?

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:

Went straight to consultant. DX within 2 weeks

How does secondary breast cancer affect your life?

I had to take ill health retirement from a job I loved. We had planned to travel far a field but now due to treatment plan our lives around that. It plays on your mind as you want to plan but are scared to be disappointed. I have aches & pains plus take a number of additional meds to counter the effects of the treatment.
It's sad to lose members of the community but also a reminder that we need to live our lives.

What advice would you give to someone newly diagnosed?

Think of the medical side as one piece of the jigsaw in how to support yourself. The mental & emotional side is as equally & if not more important to get you through. Connect with others & reach out so you feel less isolated. Finally don't consult Dr Google! He is outdated & negative with statistics - you are not a statistic!!

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Whilst I feel relatively well most of the time, the fatigue, the pain from my bone metastasis and the mental load are a constant reminder that all is not well.

What advice would you give to someone newly diagnosed?

There are modern treatments that can work very well for some patients. Make sure you are heard by your team and that your care plan is as you want. This really is a time to be selfish and put yourself first for once!

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?

Makes me look at life ahead very Differently I focus on making memories and spending time with my family and friends as much as I can . Dealing with the uncertainty can be difficult and the worry every time I have a scan has not got any easier , I find the fatigue can at times make me feel awful as I cannot join in with things I used too especially as I often need to sleep every afternoon

What advice would you give to someone newly diagnosed?

Don’t look back keep focussed on your treatment plan, speak to and meet up with others in the same pudition

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:

12-18 months

How does secondary breast cancer affect your life?

Horse voice, indigestion, some fatigue and mental health

What advice would you give to someone newly diagnosed?

Let others be of support both for yourself but for them too. If overwhelmed just take a step back from trying to take everything in and be kind to yourself

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:

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?

The worry & anxiety. Constant medications and side effects

What advice would you give to someone newly diagnosed?

Take everything one step at a time, don’t think too far ahead, deal with what is infront of you day by day. Find your support network, friends/family and those who have been affected by cancer. They’ll be your lifeline.

Time for diagnosis:

I didn't go to a doctor with symptoms. It was picked up from an unrelated stomach scan.

How does secondary breast cancer affect your life?

I am a carer to my disabled husband and mum to two children, as well as working part time in a college. I was already suffering with some fatigue, but the cancer and the oral chemo that I am now on, make it very difficult to work as well as carry out my caring duties, as well as looking after myself. I have medical appointments 3 or 4 times per week, which takes more time and energy.

The knowledge that my life is very limited now, perhaps I will only live a year or two more, is the worst thing. I am desperate to live long enough to see my daughter reach 18, but that is 8 years away. As a bereaved family (my youngest son died of a heart defect), I know how how awful grief is, especially when someone dies while they are still young. I hate thay my children and husband will have to live through that again.

Even if I live for years, I am at risk of paralysis, as the tumours are in my spine. I don’t know how my husband would cope as he is not able to do any household work or caring duties.
Our finances will also suffer more.

I try to stay in the present and enjoy making happy memories with my family, but it is hard not to worry about the future.

What advice would you give to someone newly diagnosed?

Ask a loved one to attend the first few medical appointments with you, to remember what was said and make notes.

Ask for help: people will want to help but probably won't know how. Could anyone make a dinner for you once a week? Look after your kids or do school run? Walk your dog? You may be surprised how kind people can be, if you ask them.

Try not to focus on the future too much: you only have a say in what happens today.

If you enjoy hobbies, art or walking, prioritise that over housework etc. You will need to look after yourself and put yourself first now.

Find joy where you can: watching a sunset, hugging your child, or seeing a silly movie with a friend. It doesn’t have to be expensive or time-consuming.

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?

Mental health, mobility and a constant uphill mental struggle

What advice would you give to someone newly diagnosed?

Keep mentally positive - reach out for support - keep talking - analyse diet/nutrition and keep active as much as possible with exercise. Use relaxation 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:

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:

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:

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:

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:

0-2 months

How does secondary breast cancer affect your life?

Have to plan life around treatment; pain from medications; constant worry fear; physically; emotionally; relationships

What advice would you give to someone newly diagnosed?

Dont believe information onnthe internet; find other secondaries to share your worries, etc.

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.

Who and how has SBC affected you?

My wife, Cheryl. Hospital appointments, fundraising events, carer.

What additional support do you need?

I have the support of may adult sons which is sufficient at the moment.

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.

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:

0-2 months

How does secondary breast cancer affect your life?

I am stable at the moment, and feeling well, but I hate the fact that I can never be cured.

What advice would you give to someone newly diagnosed?

SBC is frightening and at first the loss of control is mind-blowing. You do get through those initial few months as you adapt to your new norm. Antidepressants helped me.

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?

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:

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:

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?

Having secondary breast cancer is not the end, I live a more or less normal life. Some days can be more tiring and sickness can be very hard but I’m so lucky I get the treatment I do. I still work in the same job that I love in accounts with the most supportive work friends. I still exercise every day and push myself as far as everyone else, I always said if I can’t be “well” I will always make sure I keep myself as healthy as possible. I help my fiance run a gym and instruct classes and get to spend the most amazing times with the most amazing members. We just completed a Hyrox to raise £4,400 for Make 2nds Count, something not many people can do but I was never ever not going to complete it. I was so proud to raise the money and prove us secondary people can still achieve anything we want. I get to do everything I would want to do and I wouldn’t change my life. I am very lucky to have my fiancé, he doesn’t know just how much he has saved me. I have the best two children who never let me dwell or sit down to anything, they have always known mummy has cancer and they keep it real with me. My family are the most optimistic people and without them it would be hard to keep so positive but positivity really is the best thing you can have.

What advice would you give to someone newly diagnosed?

Having secondary breast cancer is not the end of your life. Take each day as it comes, don’t think about the future just enjoy the present. Positivity is the best medicine! “Some days may not be good but there is something good in every day”.

Who and how has SBC affected you?

Wife and I'm her full time carer

What additional support do you need?

Emotional support

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I retired early so fortunately I don’t have to cope with work. There are many things I turn down as I don’t have the energy I used to. My husband has multiple myeloma and secondary bowel cancer so we try to support each other and make the most of times when we’re feeling OK.

What advice would you give to someone newly diagnosed?

Don’t panic! Hard I know. Reach out to support groups in your area and online. There are lots of positive stories out there.

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.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Off work long term sick
Less exercise due to fatigue
Peripheral neuropathy due to chemo
Affects mental health at times

What advice would you give to someone newly diagnosed?

Stay positive.
There is a lot of hope out there with medication.
Have a good support system in place.
Do gentle exercise, eg walking, yoga.
Be kind and gentle with yourself.
Your journey is a roller coaster.

Time for diagnosis:

My GP didn’t diagnose this- my oncologist did immediately I had a seizure.

How does secondary breast cancer affect your life?

I had to retire from teaching as I was anxious of students experiencing me having a seizure. I cannot drive anymore, so have to rely on my husband. My right hand has limited use because of brain damage, where the tumour resides!
Day to day I wonder if any symptoms I have means that the tumour is growing. I have quite a few long term side effects from treatment.
I have hospital visits regularly for injections, scans, echocardiogram and blood tests which means planning life and trips is governed by this.
My confidence was depleted at first, but following my second craniotomy and stereotactic therapy, I feel that despite the almost daily anxiety I must plan and get on with my life. I am in a positive and happy place now.

What advice would you give to someone newly diagnosed?

Connect with either BCN or 2ndscount or build a relationship with your breast care team and talk! Ask questions; ask for second opinions about your treatment; research and seek advice about diet , complimentary treatments and general wellbeing . Please talk- don’t go through this in silence!

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

First 3 years were fine and I could live a pretty normal life. Then first line treatment stopped working. I’m currently having chemo. I’m signed off work. I can’t do any physical activity as I have severe anaemia as a side effect.

What advice would you give to someone newly diagnosed?

Do not search on Google - the info is out-dated and scary.
Find and join Facebook or equivalent groups, where you can speak to people further along this journey than you.

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:

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?

I try and live a normal although did stop working when I was first diagnosed as at the time I had no idea how treatment would affect me. Luckily I've been stable for over 5 years now and able to go on holiday and spend time with family and friends

What advice would you give to someone newly diagnosed?

If like me things aren't as bad as you first fear. I didn't want to book anything too far in advance but as time went on I can now confidently book concerts and holidays well in advance

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:

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:

3-6 months

How does secondary breast cancer affect your life?

I have constant pain in my lower back and right leg, I have fatigue and mood swings.

What advice would you give to someone newly diagnosed?

Join a peer group and talk to others suffering. DON'T Google how long you may have.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I was already an older mum at diagnosis, I had just turned 46 and my daughter was still 5, because its in my bones my life has changed immesurably, from getting dressed, to doing things with my daughter, house hold bits and bobs, I used to walk miles a day now struggle with a mile, mentally though in the words of mel gibson ???? you may take my body but you will never take my freedom!!!!! My sense of humour has won through out well mostly..except on the days where my knee hurts so much I have considered a peg leg. It is a life sentence but its my life sentence and I not cancer chooses how I deal with it all and I choose life !!

What advice would you give to someone newly diagnosed?

Feel it....the wait for scans and appointments and drugs to start is vile and by far one of the worst parts of the journey, you will most likely breqk down in the middle of tescos..go with it as the one thing I have found is kindness in strangers x

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:

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.

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!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Like having a gun to your head! Side effects of treatment hard

What advice would you give to someone newly diagnosed?

Get your plan. There are many things you can do to help yourself. Don’t rely solely on the NHS

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I had a brain tumour which then went to my lungs in 3 places. The tumour has had a lsting effect being tired and forgetful. My lungs make it hard for me to walk to far.

What advice would you give to someone newly diagnosed?

Its a cliché but you will need to be so strong. Im 2 years clear and counting, if your dr dismissed it like mine did and you known something is wrong get a 2nd opinion.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

The first 4 years were ok. Then went onto weekly Paclitaxel which meant two hospital visits a week. Had lots of infections. Been unable to go abroad. Hip replacement and neuropathy has affected mobility and currently in a lot of leg pain so walking is difficult. On a positive giving up work has enabled me to dabble in art and learn to crochet. I try to adopt a happy and positive outlook towards life.

What advice would you give to someone newly diagnosed?

Don’t panic! You can live a good life with this horrible disease. There are lots of treatment lines to help you live longer. You will adapt to this situation and learn to love life.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I’ve lived with SBC for 7 years, but I’ve not let it affect my life. I cried for a day after diagnosis but since then I’ve just got on with life. I’m super lucky that my first line treatment, palbociclib, had kept me stable for 7 years and so I’ve been able to get married, visit Japan, Australia, Morocco, Singapore and many European countries. I’ve acted as a celebrant at my daughter’s wedding and seen my nephew get married on a vineyard in Australia. Don’t get me wrong life isn’t all holidays and happy days. I’ve had a double mastectomy, a stoma, a hip replacement and 2 cataract surgeries and some days I can’t walk because the pain in bones is so severe but I always get out of bed, have a shower, spray on my Chanel No. 5 and get on with my day the best I can.

What advice would you give to someone newly diagnosed?

Don’t despair, a secondary diagnosis isn’t necessarily the end of the world. It’s possible to live a normal and happy life. Keep positive, plan things to look forward to, even if it’s a coffee with a friend and try not to disappear down a google hole.

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:

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:

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

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?

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:

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 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:

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:

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?

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:

0-2 months

How does secondary breast cancer affect your life?

My ongoing treatments and surgeries affect my mobility and carrying out day to day tasks. Food doesn’t taste the same and I’m permanently tired! I live in constant scan anxiety and it’s always there in the background in my thoughts.

I try to be as positive as I can and plan as much as I feel able. I occasionally fall down a pity hole but I have good friends that pull me out.

What advice would you give to someone newly diagnosed?

Find your tribe! Ask for help and ask the questions!

The support you will need through this journey is immeasurable, be it people in the same boat online in our secondary community or your family and friends. You will find some people retreat but some people come out that you never expected.

Don’t go to appointments alone and write down your questions to ask … there is never a stupid question! I find it useful to ask for copies of my reports so I could digest them at home properly then speak to my bc nurse with more questions.

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?

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.

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:

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:

3-6 months

How does secondary breast cancer affect your life?

Physically and emotionally
Physically I’m tired, have no hair, pain in my hands and nails all side effects of paclitaxel chemotherapy.
Emotionally I have a teenage daughter and think about her all the time and how this must be effecting her and how will she be without her mum.

What advice would you give to someone newly diagnosed?

I know it’s not easy but please try to not look back or look forward either. Just try to be in the here and now and be present.

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:

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:

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:

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

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:

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?

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:

Found via routine mammogram not GP referral

How does secondary breast cancer affect your life?

Side effects of treatment cause tiredness and aches. They worsen/lessen on a cycle so I am able to plan around my worst and best days. I have reduced my working hours to 3 days per week to help with the tiredness whilst still having a relatively normal life. I try to socialise as much as I am able and will be planning holidays whilst I am still fit enough to travel.

What advice would you give to someone newly diagnosed?

Join support groups like this one and also the MacMillan forum is great for talking to others regarding tips for dealing with side effects etc.
My motto is that I might not be able to beat secondary cancer but I don't have to let it beat me!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I am still reasonably active and able to work full time.
I have more aches and pains and tire more easily.
I suffer from anxiety around scan/results time and occasionally have the terrifying thoughts about how long I have left.

What advice would you give to someone newly diagnosed?

Never use google.
Speak to your medical team to gain better understanding- join a group such as M2C as this is vital in providing support and understanding Ali g with answers

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?

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 was diagnosed with secondary when my twins were 4 days old and my eldest was 3. There are lots of dark days when I think of all the things I will miss in my children’s lives. But the twins are now 3 and my eldest is almost 7 and I’m so privileged to have witnessed so many milestones.

What advice would you give to someone newly diagnosed?

There are bad days and I’ll never deny that but it has given me a new perspective on life and a bigger appreciation for the smaller things. So take the small wins no matter how small they seem.

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?

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:

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:

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:

0-2 months

How does secondary breast cancer affect your life?

i am exhausted

What advice would you give to someone newly diagnosed?

Deep breathes
rest
try not to panic there will be a plan
surround yourself with love ❤️

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

There has been a big emotional impact on my family and myself. I am no longer able to work, with loss of concentration and fatigue becoming a big factor when planning something. The need to look after myself better is a steep learning curve.

What advice would you give to someone newly diagnosed?

Put yourself first, take each day at a time, and make the most of any support available.

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.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

As a single parent of a 13 year old neurodivergent son, the biggest impact for me is the uncertainty about being around for my son.

What advice would you give to someone newly diagnosed?

Try to live by the philosophy of living with SBC. Many of us will live with this for a long time and it’s important to try and make that living worthwhile.

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:

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:

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:

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:

0-2 months

How does secondary breast cancer affect your life?

I have been living with secondary breast cancer for 4 years. I am lucky that at the moment my disease is stable. But I live from scan to scan and one is coming up next month. My life will feel like it’s on pause while I wait for results. I find this very stressful. I try to live an active life. I had to give up work as I worked in a school and during Covid I was advised to retire due to my lowered immune system. I miss working as I loved my job, but I have 2 children at home, and it’s lovely to always be at home for them. I appreciate the time I can now spend with them.
I try to carry on as normal a much as I can but I’ve found the psychological burden of secondary cancer is hard to deal with, it’s always with me.

What advice would you give to someone newly diagnosed?

Don’t google! Statistics are out of date. Being diagnosed is a massive shock and you will feel like you’ve been given a death sentence. But you will be happy again. Once you’ve found your new normal things get easier. Live one day at a time and ask for help. I found counselling saved me, I got this through MacMillan and it was amazing.

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:

3-6 months

How does secondary breast cancer affect your life?

On chemo .

What advice would you give to someone newly diagnosed?

Join the Facebook forums . Truly knowledgeable and supportive group of women .
Don’t trust Dr Google

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?

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.

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.

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:

3-6 months

How does secondary breast cancer affect your life?

SBC has completely turned my life upside down. I’ve had to retire from work on ill health grounds.
When I’m planning anything I have to consider the environment, space events out and have to factor in rest days.

What advice would you give to someone newly diagnosed?

Although it may seem it initially, it’s not the end of the world. There is so much support out there whether it be websites, facebook groups or local groups.
Take the time to let the diagnosis sink in and then start looking for extra support. Don’t be scared or too proud to ask for help from family and friends.
Keep a notebook to write down what oncologists say and to note any questions you may have. My notebook helps me to look back at previous appointments and see how far I’ve come.

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.

How does secondary breast cancer affect your life?

In every way MET spreading quality of life impacting exercise and mental health

What advice would you give to someone newly diagnosed?

Dont panic and definitely dont rely on Dr Google it will send you in a tailspin the SBC Site is gt and supporting

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:

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?

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?

Side effects of medication (Palbociclib, Letrozole, Adcal, Fluoextine, Ozanpine) cause fatigue, joint pain, mouth ulcers, weight gain, etc.

Struggle with limited mobility.

What advice would you give to someone newly diagnosed?

Just take each day one at a time. The initial diagnosis causes shock, disbelief and definitely a’Why Me?’! Takes time for all the information to sink in. I was diagnosed De Novo after previously being told it was Stage 2 and after my mastectomy (and probably some chemotherapy/radiotherapy) I would be okay.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

The pain in my back means that there are many things I can't do any more, but I'm trying to adjust and find new ways of coping, and also of experiencing joy. I've had to learn how to live with the uncertainty and the fear, whilst also embracing the 'living the now'. I'm saying yes to everything that I can, while I can, and trying to be honest about how I'm feeling... both happy, sad, frightened, extatic, and everything in between!

What advice would you give to someone newly diagnosed?

Don't feel pressure to 'do' cancer right. There's no right way to be, or to behave, whilst experiencing such a shocking diagnosis and it's after effects.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Being a De Novo patient i think the diagnosis hits differently. Campaigns and the media don’t represent patients like me and that has been hard to accept mentally. Treatment has affected by body significantly and whilst I am grateful to still be here, it does hinder me in living my life the way I’d like to live it. Anxiety is now something I have to live with a lot.
I find myself having to adapt so much, which frustrates me. I was NOT prepared for so many ongoing side effects.
It’s cliche but I do appreciate the smaller things in life more now and try to make the most of things if I can.

What advice would you give to someone newly diagnosed?

Never feel guilty for taking time for self care. Find support either locally or online, Make2ndsCount have made a massive difference for me. Keep a notebook for questions to ask your team. No question is silly. DO NOT GOOGLE! data is out of date! and each one of us responds differently to treatments. Find things to do that you enjoy and that relaxes you and that keeps your mind occupied, especially on those days when the anxiety is kicking in. Think of the diagnosis as a chronic condition that can be treated but not cured.

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?

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:

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:

3-6 months

How does secondary breast cancer affect your life?

It presents daily challenges. Just as you get used to a new normal something else comes along to test your resilience!

What advice would you give to someone newly diagnosed?

This is not the end, just a new beginning. Don’t lose hope!

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I’m not sure there is an aspect of my life that hasn’t changed! Everything is different, from the food I eat to the friends I have! That’s not to say it’s all bad, not by a long-shot. I absolutely embrace opportunities to enjoy life; to travel, watch live music, spend with family, basically just doing more stuff I love. It’s looming there though. I call it my little ‘cloud’ that follows me everywhere. Sometimes it’s dark and stormy and in those moments I might struggle to see clearly. On other days, I just feel it but can still stay positive.

What advice would you give to someone newly diagnosed?

Give yourself time. It probably took me 12 months + to start getting my head around things.
Join support groups but find a balance. They will give you hope but remember we are all different. What happens to one person may not happen to you.

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:

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:

2yrs

How does secondary breast cancer affect your life?

Fatigue, pain, emotional upset, forced ill health retirement, financial problems, unable to walk my dogs, insomnia

What advice would you give to someone newly diagnosed?

Breathe and be kind to yourself. Don’t google statistics and life expectancy.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Being diagnosed with SBC has changed my life in many ways, but the key thing for me has been the intense sense of perspective it has given me. I no longer take anything for granted, and try my best to really enjoy every day. I am grateful for so many things: that I am well enough to still be able to work part time, that I have have had 19 stable months post diagnosis to spend with my family and friends, that I am well enough just now to still be able to enjoy the things we love to do, especially travelling and exploring new places and that I can continue making memories particularly with my husband and two children. I am immensely grateful for the NHS and my medical team including my GP practice nurses, the chemotherapy clinic staff, my oncologists and breast care nurses and everyone else who helps to make all my appointments feel like less of a chore.
I want people to realise that there can be life after a diagnosis of SBC and that you can live well with cancer, which is why I started writing a blog sharing my daily life and aiming to raise awareness of SBC too.

What advice would you give to someone newly diagnosed?

My first piece of advice would be to stay away from Google! Statistics are so out of date that they are really no longer relevant so don’t scare yourself by looking at them.
Focus on the present, be kind to yourself and take one day at a time until you know a bit more about your treatment schedule.
If you are able to, find others who have the same diagnosis as connecting with others who really understand can be so helpful.

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 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?

SBC affects every part of my life, emotionally, physically and financially. I am in pain every day from bone bets, I'm tired and exhausted from treatment and medication side effects. I can't work because of the pain. My husband and kids struggle with my diagnosis too, they live in fear and worry of me getting sick if they have the cold etc

What advice would you give to someone newly diagnosed?

Take time to process information given to you at appointments etc

Take all the support offered to you

Believe in your own strength and courage ❤️

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

At times trying to process a new way of living.

What advice would you give to someone newly diagnosed?

Focus on the positives as they out weigh the negatives we have got this ????

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?

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.

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?

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?

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:

0-2 months

How does secondary breast cancer affect your life?

SBC has changed every aspect of my life, from ambitions and long-term plans, to the way I live my life day-to-day. It is hard living with the uncertainty of an incurable illness and being dependent on different drugs for life. But not everything has been a negative - I am much more in touch with what is really important in my life and be sure to enjoy every day as much as I can.

What advice would you give to someone newly diagnosed?

Give yourself time. It is a really difficult diagnosis to come to terms with - whether or not you've had primary breast cancer beforehand. Groups like Make 2nds Count are a fantastic source of support and take advantage of all the facilities at your hospital and area. Try taking up a new hobby or skill - it reminds you that life can move forward and there are new horizons even with a SBC diagnosis.

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?

I'm quite fatigued a lot of the time, but I push myself to keep going every day. Mentally it's unbelievably tough, it's like being two people. One who's in complete denial and thinks how can this possibly be true, and the other who is thinking about cancer multiple times a day and trying not to get bogged down with the enormity of it. It's tough.

What advice would you give to someone newly diagnosed?

Try not to panic, it's probably not as bad as you think. Your team will have the best treatment for you, life will carry on, the usual day to day things that bring you comfort. Take all the support you can, online groups are so supportive, seek them out.

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:

3-6 months

How does secondary breast cancer affect your life?

I’ve been medically retired from work.
I manage my pain with medications.
It’s turned my life upside down and has made me change my priorities in life. Now, I try to treat each day as though it’s my last.

What advice would you give to someone newly diagnosed?

Take time to absorb the news and note down everything you’re told. Have someone with you at appointments as you don’t always take things in.

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:

0-2 months

How does secondary breast cancer affect your life?

Having secondary breast cancer feels like a constant rollercoaster. From worrying about a bad scan to bring thankful for the drugs that are available to prolong my life. From being distraught that I'll miss a lot of my daughter's life in the future to treasuring every precious moment I spend with family and friends.

What advice would you give to someone newly diagnosed?

Hold your plans lightly. Still make plans and enjoy the anticipation, but understand that they might change our look different.

Time for diagnosis:

Mammogram and diagnosis after primary treatment started so from October to Feb

How does secondary breast cancer affect your life?

Weekly hospital and gp visits, loss of use of arm, neuropathy affects walking, tiredness , unable to do housework, walk my dogs, change of treatment anxiety and scans each 3 months.

What advice would you give to someone newly diagnosed?

Rest and plan ahead claim any benefits you’re entitled to including blue badge.
Talk to others in similar circumstances, ask for help, leave behind negative influences. Celebrate all achievements and spend time doing and being with people who you love and support you.

Who and how has SBC affected you?

Deb Hill - friend and former work colleague. An inspiration who has not only positively impacted upon me, but also my family.

What additional support do you need?

None, thank you.

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:

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?

My life is divided into before and after my diagnosis. Physically I am not the person I was before, especially as my latest treatment has taken my hair.
I was diagnosed 'de novo' but in the course of a treatment pathway that initially treated me as a primary patient until we found more disease through mastectomy pathology and scans. From December 2019 to March 2020 was a rollercoaster of bad news and when I was told I was incurable it was a huge blow. Fortunately at Hull we have a very good breast unit and I was given positivity and hope by being told that lots of women live with it like a chronic illness.
I had chemo and radiotherapy and then went on to tablets which meant fewer hospital visits and keeping my hair. This period almost allowed me to 'forget' I had cancer and I even returned to work.
Fast forward 2 years and my cancer progressed slightly and after a biopsy, it was found to have flipped from ER+ to Triple Negative. Progression is what we all fear....I went back on IV chemo with Immunotherapy initially and then onto a different chemo when that stopped working.
As I move along treatment lines I am still positive but more treatment, more side effects and more contact with the hospital brings the reality home a bit more. Mentally, living in 3 month blocks between scans can be hard and people talking about the future can be heartbreaking as you wonder how much more you will see.
I was lucky enough to get a place on the first Make 2nds Count retreat in Edinburgh in August 2021 where I met other ladies and could chat about all sorts of things - cancer and otherwise. This gave me hope and friendship. I was doubly lucky to get a place on the recent first ever Make 2nds Count Secondary Breast Cancer summit in July in Liverpool. Again it gave me hope listening to the advances in research and development of new drugs and treatment.
METUP UK ran their Darker Side of Pink campaign in October 2021 and my video of the impact of being diagnosed 'de novo' is accessed on their website or via a QR code on one of the 31 pink perspex figures still touring the country.
Alongside all the cancer stuff I make the most of my days. I run the local Beavers colony with the help of the lovely Kerry and my niece Emily. I spend time with my husband Tony and 12 year old son Jake at home, on day trips and holidays. I also enjoy coffees and lunches with friends, being part of the Positive Note choir, a couple of book clubs, going to yoga, going to the theatre and helping to run Second Friends, out local secondary breast cancer support group.

What advice would you give to someone newly diagnosed?

Live your life as well as you can for as long as you can. Look after yourself so you are in the best condition to benefit from your treatment. Join a support group to get advice, use any resources at your hospital and advocate for yourself. Ask for help when you need it and try not to feel guilty.
Find your joy - you may have changed on the outside but the essence of you is still there.

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 am more tired at certain times of the month and I seem to pick up a lot more infections than before. However, the biggest impact on me at the moment is emotional. I don’t have any physical symptoms of cancer, I haven’t had surgery but I feel as though I have a dark cloud looming. I have 3 children, a husband and a loving family and I hate how this diagnosis impacts them. The fear, the unknown, the uncertainty and the constant niggle that things will only get worse and not better.

What advice would you give to someone newly diagnosed?

Don’t look at statistics online. Surround yourself with real knowledge and support, whether that be in real life or online. Get counselling to help process the diagnosis. Cry whenever you need to but live life to the max when you can.

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:

12-18 months

How does secondary breast cancer affect your life?

It has ended my career that i worked so hard to achieve. However, it has given me a new purpose, helping others in my situation.
Surgery and my treatments have an affect on my body, and there are times when i get frustrated about things i can no longer do, but i find alternative ways or take my time. I try my best to live life to the full. Trying to remember to pencil in "rest days" as i suffer with extreme fatigue.

What advice would you give to someone newly diagnosed?

Find your tribe. Find other patients that you can talk to who understand what you are going through.
I have lost friends since my diagnosis, but i have also gained alot of friends too, who understand our new "way of life", with hospital appointments, scans, treatments etc...