Your Stories

1000s Truths

This Breast Cancer Awareness Month, we're shining a light on the many realities of living with secondary breast cancer through stories from mothers, daughters, fathers, sons, and family members.

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Vernon

Friends/Family member

Joy

Sarah

Patient

Claire

Audrey

Patient

Ally

Friends/Family member

Kelly

Mikka

Patient

Aileen

Patient

Nadia

Patient

Jackie

Anna

Patient

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Sarah

Patient

Helen

Patient

Charmain

Patient

Rachel

Patient

Marlies

Joanna

Patient

Jane

Friends/Family member

Jane

claire

Patient

Katie

Kam

Patient

Kathryn

Beth

Patient

Ayeesha

Friends/Family member

Maxine

Patient

Lindsy

Patient

Liz

Patient

Janet

Patient

Donna

Patient

Fran

Patient

Elizabeth

Patient

Kim

Patient

Wendy

Patient

Olivia

Patient

Hollie

Patient

Amanda

Tansy

Hilarie

Patient

Christine

Patient

Helen

Patient

Annonymous

Vicky

Patient

Tanya

Patient

Joanne

Friends/Family member

Sarah

Patient

Jane

Patient

Susan

Patient

Helen

Patient

Annonymous

Patient

Zeenat

Michelle

Patient

Sarah

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.

sarah

Patient

Wendy

Patient

Brian

Patient

Heather

Simone

Sarah

Patient

Elizabeth

Nicola

Patient

Shirene

Jessica

Patient

Helen

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Lucy

Patient

Jane

Patient

Pauline

Patient

Lisa

Patient

Tessa

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.

Emma

Rachel

Patient

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...

Mary-Jane

Patient

Mary

Christine

Natalie

Neil

Friends/Family member

Carol

Emily

Patient

Mandy

Patient

Viv

Patient

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.

Sue

Claire

Friends/Family member

Lee

Patient

Amanda

Patient

Jane

Patient

Rosie

Patient

Claire

Emma

Patient

Lorna

Patient

Caroline

Patient

Sarah

Patient

Nadine

Patient

Sonia

Patient

Clare

Patient

Brenda

Patient

Julie

Doreen

Patient

Samantha

Kat

Patient

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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

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

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

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

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

Kat

What advice would you give to someone newly diagnosed?

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

Jo

Patient

Kelsey

Patient

Dorothy

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.

Alexandra

Patient

Suzy

Patient

Mhairi

Alison

Patient

Jessica

Patient

Jane

Louise

Patient

David

Patient

Susan

Patient

Kathryn

Patient

Sarah

Patient

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Melanie

Friends/Family member

Janette

Melanie

Patient

Vicki

Patient

Rebecca

Patient

Fiona

Patient

Emma

Nicola

Patient

Joanna

Evie

Patient

Kelly

Patient

Joanne

Simone

Patient

Heather

Patient

Kirstie

Helen

Rachel

Patient

Kate

Patient

Sue

Sophie

Nichola

Patient

Lindsy

Sophie

Claire

Patient

Allison

Friends/Family member

Ellen

Patient

Lizzie

Jacqui

Sharina

Friends/Family member

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.

Claire

Patient

Kelly

Patient

Lauren

Friends/Family member

Wendy

Patient

Kay

Patient

Annonymous

Patient

Kirsty

Patient

Wendy

Louise

Patient

Maggie

Patient

Robyn

Patient

Amy

Emma

Patient

Suzanne

Ella

Friends/Family member

Fran

Patient

Sarah

Alex

Time for diagnosis:

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

How does secondary breast cancer affect your life?

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

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

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

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

What advice would you give to someone newly diagnosed?

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

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

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

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

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

Joanne

Kathryn

Pauline

Helen

Jenna

Patient

Diane

Patient

Linda

Wendy

Friends/Family member

Terri

Sarah

Maxine

Patient

Helen

Patient

Louise

Joanne

Patient

Orlagh

Patient

Fiona

Marie

Patient

Claire

Patient

Fiona

Patient

Clare

Patient

Nicola

Patient

Kevin

Friends/Family member

Helen

Patient

Susan

Patient

Rachel

Dawn-Marie

Patient

Zoe

Friends/Family member

Janice

Patient

Gemma

Patient

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!!

Claire

Katharine

Katherine

Patient

Kaz

Patient

Sarah

Patient

Simone

Patient

Louise

Patient

Sarah

Patient

Kirsty

Patient

Alyson

Patient

Vanessa

Patient

Samantha

Kathryn

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.

Rose

Patient

Katie

Lucy

Friends/Family member

Joanne

Patient

Liz

Patient

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 ❤️

Becky

Una

Patient

Nicola

Patient

Sarah

Patient

Lenneke

Patient

Andy

Friends/Family member

Cathryn

Friends/Family member

Jenny

Patient

Dawn-Marie

Patient

Helen

Susan

Patient

Diane

Denise

Lorna

Tracie

Patient

Jane

Patient

Melanie

Patient

Tracy

Patient

Jacqueline

Patient

Sarah

Patient

Nadia

Patient

Kate

Katharine

Patient

Debbie

Laura

Julie

Lesley

Patient

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.