Your Stories

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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Definitely dont google statistics everyperson is different and alot of the websites are outdated.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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

On chemo .

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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:

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?

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

What advice would you give to someone newly diagnosed?

Take time to process information given to you at appointments etc

Take all the support offered to you

Believe in your own strength and courage ❤️

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

SBC makes me want to live longer and healthier it makes me appreciate things more .
It upsets me that my body is failing me & that I am off work , I’ve missed celebrations with family and friends .
I am tired and emotional .

What advice would you give to someone newly diagnosed?

Stay away from Dr Google . You’ll always see the worst case scenarios .
Don’t be hard on yourself
Be mindful that stats around life expectancy aren’t always accurate & there are now so many great treatments available & more being approved .

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

i am exhausted

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Massively with tiredness and a lot of side effects from medication

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

Found via routine mammogram not GP referral

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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?

Limits activity, has stopped me being able to drive.

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

Breath! Ask questions and join FB groups which help immensely

Time for diagnosis:

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?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

It 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:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

Keep hoping

Who and how has SBC affected you?

Wife and I'm her full time carer

What additional support do you need?

Emotional support

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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 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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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. 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?

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:

Mets were discovered by chance on a chest CT scan.

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

Although I've put under 2 months for diagnosis it's not strictly true as for 4yrs I complained of fatigue and odd aches & pains. Difficult to know in hindsight if I had secondaries when treated for primary BC.
Secondary BC affects my life in all aspects from planning around appointment dates, to planning everyday so I don't overdo things. Going away is more problematic as have to consider where is suitable if I should be poorly while away, what I can physically cope with while away, insurance etc. Both hubbyy & I have retired earlier than we would have so money has become more of a consideration. I'm lucky to get attendance allowance and that helps a lot. I miss being able to garden and get upset that garden is such a mess. My husband has recently been diagnosed with prostate cancer so that's and additional worry for my two grown up sons that I wish they didn't have to worry about us both. Having sbc has brought many new friendships both f2f and online, ladies I wouldn't have met otherwise but am so glad to have in my life.

What advice would you give to someone newly diagnosed?

Take a deep breath, you're not going to die tomorrow or next month. You can live well with SBC for many years. Grab opportunities with both hands, make the effort to do stuff you enjoy today, don't put stuff off. Keep your family and friends that get your diagnosis close, don't bother with those that want to tell you all about someone they know with cancer who's having a rough time. Nurture the friendships that give you joy and let go of those that don't.

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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:

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:

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:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

The 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:

Went straight to consultant. DX within 2 weeks

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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?

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?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

I've had to adapt and learn to deal with the uncertainty of life now and the physical and emotional changes of having an incurable disease. I do however have a deeper appreciation for my family, travel more, no longer put things off and find the joy in life in a way I didn't before. Basically, I don't sweat the small stuff.

I was no longer able to work and had to leave a job that I loved and retire at 50. I now see this as a positive though as I am able to rest when I need to and stress is reduced.

By far the most difficult part of all this for me is how it effects my husband and teenage children. I hate that they have to go through this.

What advice would you give to someone newly diagnosed?

There is a lot to process when newly diagnosed so be gentle with yourself and don't be afraid to ask for support. I found meeting others with a similar diagnosis helped as its hard to talk to friends and family about your worries and fears sometimes.

It's so overwhelming but just take one day at a time and you will smile and laugh again.

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:

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

12-18 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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:

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?

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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?

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

What additional support do you need?

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

Time for diagnosis:

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:

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:

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 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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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.

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:

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:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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.

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.

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 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:

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.

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

6-12 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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?

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

What advice would you give to someone newly diagnosed?

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

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:

0-2 months

How does secondary breast cancer affect your life?

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

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

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

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

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

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

Kat

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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.

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

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

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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:

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!

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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?

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:

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:

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?

I am one of the 6-10 percent of women diagnosed de novo secondary breast cancer. So I will never ‘beat this’ or get to ring a bell. That glimmer of hope, I have never had.
I have gone from being a care free, fit and healthy person; never having a blood test to now having 3monthly scans hoping for the word ‘Stable’ to allow me to carry on living my life.
I hardly took paracetamol before, but now I take enough tablets to rattle… drugs to help control my pain and drugs to control the cancer.
And the effects of being put in medical menopause…. The hot flushes! All tough for someone in their 30’s
I’m a ward manager at my local hospice so talk about busman’s holiday ???? I have gone back to work but I need to manage my fatigue. I would never give up work just yet as I have still got so much to give to those who need me. I love to make a difference…. In any way I can! And I refuse to let it take more things away from me.

What advice would you give to someone newly diagnosed?

It’s tough, but you can do it. Life is for living and this pushes you to just do that… Live!!
All the small things matter, and you will smile again.
Eat the cake, drink the fizz, buy the dress, buy the shoes and get on that plane!!

Time for diagnosis:

Several years

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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:

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

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:

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.

Who and how has SBC affected you?

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

What additional support do you need?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

Feel every single emotion and dont hide it!

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

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.

Who and how has SBC affected you?

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

What additional support do you need?

None

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

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:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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?

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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:

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

How does secondary breast cancer affect your life?

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

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

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

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

What advice would you give to someone newly diagnosed?

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

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

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

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

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

Time for diagnosis:

3-6 months

How does secondary breast cancer affect your life?

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!

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

What advice would you give to someone newly diagnosed?

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

Time for diagnosis:

0-2 months

How does secondary breast cancer affect your life?

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

What advice would you give to someone newly diagnosed?

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