Your Stories

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:

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

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?

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?

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

In every way. My life now contains fear, anger and grief every day, at the freedom I’ve lost and the years I am likely to lose with my children, and for the amount of utterly amazing women I’ve met along the way who are in the same boat. But it’s also brought more freedom - I’m clearer, less anxious and more courageous. I’m more determined to not put things off and to make the most of my life - not really by ticking things off a bucket list, but by every day doing the things I love and value, not doing the things I don’t, and genuinely engaging with and appreciating my world. Four years later, I put up with less stuff that drains me now.

What advice would you give to someone newly diagnosed?

Don’t Google prognosis - SBC is so criminally under-researched that the statistics are just not helpful or reliable. Find SBC communities in real life or online. Having people who ‘get it’ is so precious. Take one day at a time and really enjoy all the moments you can. Of course you’re going to be worried and anxious and scared, and find the people who can care for you and accompany you in that (some people will surprise you - the people who lean in to you and the people who lean back are not always who you expect). But life is truly too short and try to work out when the worry is taking over and try to do things that you enjoy instead - make the most of all the minutes you can. And squeeze your loved ones tight and tell them you love them.

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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.

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:

12-18 months

How does secondary breast cancer affect your life?

I was made disabled due to the tumour on my spine breaking my vertebrae, which had to be replaced with a metal cage. I was in hospital for 5 months and came home unable to walk. With physio I have learned to walk again with a stick, but not properly due to a drop foot and reduced sensation in my feet. I have pain everyday and am unable to drive and haven’t left the house alone for over 2 years. I put on 4 stone due to steroids to help my pain and I no longer recognise myself. I am unable to work as a teacher anymore, so I now have another home based business that I’m able to do over the phone. I don’t see as many friends and I can’t do much with my children anymore. I am no longer the busy Mum that used to be and I have to watch my husband and parent’s doing everything that I used to do in the family. My husband is struggling with his full time job and my carer when he’s home as well as doing all the household chores and the cooking for our family when he’s finished home. Our marriage has suffered with the emotional & physical weight, as well as my lack of libido due to my hormone treatment! My children are facing growing up without a Mum and it hurts me so much, every minute, of every day.

What advice would you give to someone newly diagnosed?

Use the support and help that is offered to you and connect with friends and family rather than push them away.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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?

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.

Who and how has SBC affected you?

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

What additional support do you need?

Any help would do.

Time for diagnosis:

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.

Who and how has SBC affected you?

My wife. I supported her over the 13 years she lived with Secondary breast cancer until she died from the disease in January.

What additional support do you need?

Although I feel that those partners that share the stress and heartache are rather overlooked, I would still advocate that all effort is put in to helping those that have the disease in their bodies.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It 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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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?

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

What advice would you give to someone newly diagnosed?

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

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:

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.

Who and how has SBC affected you?

sister

What additional support do you need?

online groups and in person meet ups

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I 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:

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...

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.

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:

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?

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:

3-6 months

How does secondary breast cancer affect your life?

Medically retired in my 30s, cant be the Mum i want to be to my children, most treatments have left me neutropenic at best, havent been abroad in 6 years, my brother doesnt speak to me as he cant handle my diagnosis. Im more selfish and i try have more fun.

What advice would you give to someone newly diagnosed?

There are a lot of treatment options now and the survival statistics are very outdated. Be your own advocate. Get a second opinion/ change oncologists or hospitals if youre not happy. Get copies of your notes. Live as fully as possible and be kind to yourself its all a huge shock.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

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

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

It has scared my family and friends.

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

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

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

What advice would you give to someone newly diagnosed?

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

It will be ok xx

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

SBC affects my life in many good and bad ways. For the last 10.5 years I've lived by 3 weekly cycles (unless a reason) had many emotional ups and downs over this time. Hair loss 4 times. I was 26 when diagnosed, therefore the having children choice has been taken away from me, that still eats me up as I have had the same partner throughout all of this, and the guilt I feel is immense.
There is nothing more gutting than hearing your cancer has popped up somewhere new after being on a treatment for 2 years, but I'm always thankful there is something new to try. The fact it spread to my brain in 2016 was the most devastating of all. I had brain surgery 10 weeks before my wedding in 2017. That was not completely successful and I had to get another surgery 6 months later, leaving me with a gap in my skull and an "egg of fluid" which can cause dizziness. It has now returned and I'm awaiting a plan of action.

I have also lived a completely different life with SBC I think, I've been to places, and done things that I wouldn't normally do, I raise money for different charities and help spread awareness as and when I can. I live each day. Always grateful, and living in hope.

What advice would you give to someone newly diagnosed?

It is devastating to hear, but I suppose myself, and many others, are an example of how you can live well with cancer. The research and treatment have come on leaps and bounds over the 10 years I have been affected and I'm SO grateful for this.
Always live in hope!

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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?

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?

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

What advice would you give to someone newly diagnosed?

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

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I was 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:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I have 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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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:

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:

0. I received my diagnosis from my Oncologist

How does secondary breast cancer affect your life?

To put it quite simply, it affects me every second of every day i live because i am living with Secondary Breast Cancer

What advice would you give to someone newly diagnosed?

Live & appreciate each day

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:

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.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

It affects every single thought and every single action, every single day. It’s hard to live your best life every day when everything takes so much effort. It’s difficult to make plans around appointments and not knowing how you’re going to be feeling both physically and mentally.

What advice would you give to someone newly diagnosed?

Take it one day at a time and take all the support you can get. I have accepted the fact that I have secondary breast cancer, but I haven’t yet acccepted that I’m going to die. There is hope. Always hope.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

12-18 months

How does secondary breast cancer affect your life?

SBC totally upends your life with appointments, treatments (if we're lucky), check ups, recovery, side effects: everything. The impact on the family is intense, they share the fear and anxiety that we live with all the time.

What advice would you give to someone newly diagnosed?

If you think something is wrong or suspicious you must insist your GP, or whoever, refers you to your breast unit. Then hassle for all you're worth to get scanned. Don't leave test results too long - chase everything.

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?

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?

Im currently in treatment for HER2 secondary in my chest on the right side. My primary BC was in my right breast, and was TNBC. I am in the 10% minority of patients that the recurrence has been resurrected as different cancer. It has been such a shock, three years to the date of my right mastectomy. I was in denial for a few weeks. I am staying very positive as HER2 has a good response to chemotherapy and ill be having Phesgo injections to maintain. I'm keeping healthy and i will not let cancer define me nor my outlook on life. My cup is always half full and I want to be around for my son for as long as possible and wish to one day, meet and love a grandchild!

I'm nearly finishing my chemo - one more left on 11th September then Phesgo injections - I've coped this time around incredibly well with the chemo treatments, continued to work and keeping very positive about the future.

What advice would you give to someone newly diagnosed?

Please try not to research too much on the internet, show dignity and try and remain positive. There are so many treatments available and it is not a life sentence! Your journey is unique to YOU only. Keep active and try and smile through adversity. Cherish the good days, dig deep on the bad days. Have faith.

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:

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?

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:

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:

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?

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?

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?

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?

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?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The trauma of worrying how long I might live Oncologist said 6 months to 2 years. Side effects of oral chemo Capecitabine seems to be accumulating. Stiff hands & feet, nausea, sleepless nights, hands & feet peeling Isolation

What advice would you give to someone newly diagnosed?

Do all the things you want to do. Put yourself first

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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 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:

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.

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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:

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.

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

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.

Who and how has SBC affected you?

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

What additional support do you need?

I suppose help on times on what to say …

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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?

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:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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!!

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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:

3-6 months

How does secondary breast cancer affect your life?

It is all consuming and never leaves you however distracted you are.
This is not my quote but the best description I heard is like it’s constantly living in the middle of the road whereas most people live on the pavement.
On the plus side I feel liberated to enjoy life and make the most of things. Do what I want and not what I don’t want.
But it’s getting the balance right of living like you’re about to die and living a normal life.

What advice would you give to someone newly diagnosed?

Don’t google - easier said than done
Don’t worry about what you can’t control
Find joy in the small things
Spend time with the people who make you feel good not the ones who don’t

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I 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:

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?

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”.

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

Secondary breast cancer has robbed me of so much, not least being able to be the mum I once was to my children. My youngest only knows a mum who is sore and tired

What advice would you give to someone newly diagnosed?

The only advice I have is to take one day at a time, it may sound easy but you have to keep bringing yourself back to the present day. It can be easy to crave life before sbc and hard to think of the future. This leaves only the present to find a little peace and hope.

Time for diagnosis:

MTNBC was detected on a routine monitoring scan at the Royal Marsden

How does secondary breast cancer affect your life?

With MTNBC I feel like I'm living my life with a gun to my head in a game of Russian roulette. I know that having MTNBC for 8 years (the last 4 of them NEAD) I'm pushing the boundaries for someone with triple negative but this has only happened because I advocate for myself & challenge things & it shouldn't be like that.

What advice would you give to someone newly diagnosed?

Get as much knowledge as you can and advocate for yourself. Get 2nd opinions & take time to think about what the best treatment option is rather than rush o to a treatment that could prevent you from a more effective treatment down the line.I'm living with this not dying from it and try to remember that as I find it helps.

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

In every way.
Physically… the pain, the drug side effects. Not being able to continue to work,
Mentally…the guilt of knowing you may have passed your faulty BRACA gene to your children, the distress that you have an estimated prognosis of 2-3 years, the knowledge that you will never be cured and will be on brutal treatments for “life”. Regularly have your friends, made through SBC, die.
Practically … the endless regular hospital visits for blood tests, treatments, injections, CT scans, MRI scans, scan results.

What advice would you give to someone newly diagnosed?

Make contact with a good support charity such as M2C
Through this , hopefully you will get support and advice and make friends.
You are not alone.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

I am from Ireland not the UK so not sure if any good to you but will share anyways just in case…
I do chemo for 3 weeks out of each month so only 1 week off. I have 2 young children so that’s the hardest part physically, mentally and emotionally. The side effects can be tough but know without my chemo I wouldn’t be here so I suffer through to get as much time as possible with my children.
I have had to give up a job that I loved, teaching. And as a result of course we have been affected financially, with only one regular income from my husband.
Life has done a complete 360 on my family but we make the most of the good days and there are plenty of them!

What advice would you give to someone newly diagnosed?

Find a local cancer support centre. I couldn’t be without mine now and visit weekly for counselling, reflexology, meditation, chats and catch ups with people who understand it all and more. No explanations or apologies needed.
It can be so overwhelming at the start - being bombarded with information. Need to take a step back - it’s near impossible but try not to use Dr Google. I’ve had myself written off so many times. Also people can mean well but you can also be offered lots of unwanted advice and told what to do to “cure” your cancer. I’ve found this can especially come from people who have never been through cancer! Be careful.
Finally the hardest of all…be prepared for people in your life to react/handle your diagnosis differently to what you had expected. Some people you thought would be with you through thick and thin will disappear and others you hadn’t counted on will step up. It’s incredible and sobering to discover this and seems to be a common occurrence. Do not take it personally, it’s their issues not yours!!

Time for diagnosis:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

Treatment every 4 weeks requiring more than half a day off work, plus additional appointments for scans and consultations. So far, no symptoms related to secondaries. Minor side effects from treatments including hot flushes, very dry and peeling skin, occasional diarrhoea.

What advice would you give to someone newly diagnosed?

I don't know, I'm only newly diagnosed myself and still coming to terms with 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:

Mammogram- ct within a week

How does secondary breast cancer affect your life?

It has changed who i am and the plans i had for my future.
I am not as strong as i once was and get tired easily and ache more.
I get frustrated especially when told yet another chemotherapy hasnt worked for me. I feel like im either being punished and wonder what i have done to deserve this.
Breast cancer robs you of a lot of your femininity from surgery, loosing hair, nails, teeth, its cruel.
2ndry has robbed me of a future with my family , friends and loved ones.

What advice would you give to someone newly diagnosed?

Try to remain positive but know its ok not to be too.
Make the most of the good days and live each moment to the max.
Most of all remember you are still you and shine when you can.

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Everyday life now is based around hospital visits, tiredness and trying to stay upbeat so others don’t over-worry.

What advice would you give to someone newly diagnosed?

Take a deep breath and try to take time to work your through the shocking and life-changing diagnosis.
Try not to use Google.
Spend time with those close to you so you can have their support.

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:

2 weeks

How does secondary breast cancer affect your life?

I don’t have the same energy so Everything takes a little bit longer.

What advice would you give to someone newly diagnosed?

Find people in the same situation as yourself. Don’t google and take time to process everything. Don’t be afraid to ask questions.

Time for diagnosis:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It affects every part of my life. It’s not necessarily the first thing I think of when I wake up anymore but there is daily reminders of it. Whether it be the tablets I have to take everyday or the not working full time or aches and pains I have.

What advice would you give to someone newly diagnosed?

This is manageable. It may not seem like it in the beginning but you can do this. Use the help and support that is available and don’t google. The support from Make 2nds Count is amazing and there is so much knowledge in the fellow patients. It can also be a nudge to you to Go Grab Life ⚡️

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.

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.

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?

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:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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:

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?

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

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

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

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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 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:

0-2 months

How does secondary breast cancer affect your life?

It takes up a lot of my life. I have weekly blood tests and weekly IV chemo, scans every 3 months and regular appointments with my oncology team. On top of this it is very hard not to think about cancer, living and dying every day. It’s exhausting! I’ve had to give up the job I loved and I’ve lost friends and family who haven’t been able to deal with my diagnosis. That being said, I’m very lucky to have close friends and family who support me and help me through although it can be a very lonely place at times.

What advice would you give to someone newly diagnosed?

Take one day at a time. Don’t google. You will be able to smile and laugh again!

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:

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?

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?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

Primary diagnosed 2 weeks after GP visit but secondary identified during scans as part of primary diagnosis, 8 months later

How does secondary breast cancer affect your life?

I was pregnant with my 3rd child when primary was diagnosed, the baby was 6 months old at secondary diagnosis. The biggest way it affects my life is how much effort goes into ensuring theres minimal affect on my young children. Another 'biggy' is just how bloody time consuming it all is. The worst bit is wondering if my children are going to remember me.

What advice would you give to someone newly diagnosed?

There is so much support out there, even if you think you dont need it ... give it a try

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

Who and how has SBC affected you?

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

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

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

What additional support do you need?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

I’m very positive, but at times I suffer pain, nausea, tiredness and other side effects of the treatment I am on.
I do so much to keep living my life, but at times it’s hard.
I get sad when people ask when will I finish my treatment. I lost my mum and my brother to cancer. It’s always there.

What advice would you give to someone newly diagnosed?

Take it a day at a time, and try to talk to someone. Please don’t go on the internet. If you have to use only reputable cancer sites.
If you have a partner remember they are going through this to, and will deal with it in a different way to you.
Have things to look forward to, do everything you want and can do, and above all be kind to yourself.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

No visit to GP

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Who and how has SBC affected you?

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

What additional support do you need?

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

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?

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:

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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:

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:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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.