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AMA

Incurable cancer in my 40's AMA

64 replies

BodysBroken · 06/01/2025 10:27

I'm a 43 year old mum of 2 with incurable breast cancer.

I'm very comfortable speaking openly about it and thought this may be helpful for others with similar diagnoses, friends and family supporting loved ones through it, or anyone who's just curious.

I'm not looking for sympathy, no question is silly and I don't take offence easily.

I'm a regular user but have name changed as I'm sure I'll be recognised.

OP posts:
BodysBroken · 06/01/2025 17:18

Startinganew32 · 06/01/2025 11:06

So sorry to hear that your cancer is stage 4. How did you discover that you had it? Did you have a lot of symptoms? Did you find out it was stage 4 on the initial diagnosis or were you treated and then it came back? How were you able to process that it was stage 4? Do you have children and if so how old are they? If you have a partner have they been supportive? Sorry for the barrage of questions.

I sneezed and collapsed to the floor, screaming that I thought I'd broken my back. A locum doctor diagnosed a pulled muscle over the phone and gave me a diazepam prescription.

2 months later, I scratched an itchy boob and felt a lump. I went to the GP who referred me to the breast clinic under the 2 week wait. I had a mammogram and ultraaound followed by a biopsy and was then called back into the consultant's office to be told it was cancer. It seemed to be one small tumour, so I was expecting a lumpextomy, a few years of tablets and then to forget all about it. My back wasn't hurting at the time and I'd never have dreamt it.could be connected so I didn't mention it.

A couple of weeks later ky MIL fell ill anslf then died unexpectedly. Around the same time my back pain came back with a vengeance. My husband was away in his home town so I was carrying the whole load at home and also travelling up and down the country so I assumed I was just overdoing it.

On the morning of my surgery I mentioned the back ache to my nurse, who said we'd better get it scanned, that was the point at which I realised things might be bad.

Sure enough a bone scan a couple of weeks later revealed that one of my vertebrae had been eaten away by a tumour and I had by this point been walking around with a broken back for 6 months.

My breast surgeon told me over the phone and asked me to go straight into hospital so they could assess whether theyncould operate. I don't even know how to describe how I felt getting that news. It was absolutely terrifyijg, I went straight into a panic attack and couldn't hear what she was saying. My husband took the phone and she was great - very calmly and slowly talked him through sorting out the children, what to pack and where to go.

I had surgery on my back and have since had both hips replaced too. For the first few months I was a mess. I wouldn't book anything as I was convinced I'd he dead. I was in an absolute panic, there was also a lot of guilt that I may have done something to cause it or should've picked up on the lump sooner;; anger at the unfairness; and a feeling of being utterly alone.

But the turning point was a combination of just taking time to go tgrough the various stages of processing it; and throwing myself into alln the face to face groups, retreats, online support, everything I could find. Ive drawn a lot of strength from meeting other women going through the same and I'm good at focusing on the positive stories of those who've lived well with it for a long time. I still have bad days - some days I'm literally frozen in fear and don't get out of bed - but I have more good days.

Mine is the most common type of breast cancer - ER+ So in a sense I feel lucky, as it has the most treatment options. There arenat least 6 open to ke currently plus trials and bew treatments being developed all the time. Some of the treatments will work for several years for aome women - but not at all for others, and there doesn't seem to be any rhyme or reason. My furst treatment has just stopped working after just over 2 years (new tumours in my spine) so I've just had radiotherapy ro slow things down and am awaiting a new treatmenr plan. If I'm very lucky I could get 10+ years on my next treatment, if I'm not I could go through all avaliable treatments in the next 2 years. It really is that unpredictable. So prognosis conversations don't tend to happen until you teach the last available treatment.

My husband is fab - thankfully we already had a good, strong relationship. My parents, wider familyn ad friends are really supportive too.

We have a DS11 and DD9. By far the worst part of this whole shitshow is the likelihood that I will leave them before they're grown up I've also got tremendous guilt at how their lives have changed already. The bone mets and surgeries have left me disabled, with poor mobility, near-constant pain, I'm frequently absolutely floored with fatigue and I've had weeks at a time either in hospital or on strict bed rest.

OP posts:
Eyesopenwideawake · 06/01/2025 17:32

BodysBroken · 06/01/2025 10:42

Thank you! Yes that would be great please.

Whilst there's no miracle cure once it's spread and there doesn't always seem to be any rhyme or reason to why some of us die very quickly whilst others live many years with no active disease, there are so many treatments out there now, as well as complementary therapies and lifestyle factors that cam help, it's really important to keep up to date and advocate for ourselves. I'd be very interested to speak to your friend and find out what treatments and care she's had.

No problem! Is it OK to PM you?

Elisebev · 06/01/2025 17:48

ChocoChocoLatte · 06/01/2025 10:29

Me too. Diagnosed incurable de novo since 2018 aged 42. Almost 6yrs into this cancer dance and yet so many people have no idea it IS possible to live a life with cancer.

I write about it a lot to help spread awareness.

Good luck to you Op. I hope you have all the support you need.

I thought I had written this post.

I was also diagnosed in 2018 at the age of 42. I will be 7years at the end of January. For a few years I was able to live a normal life with just hormone therapy. It's in my bones and liver). This time last year I found a new lump on my breast. It was an agonising wait till everyone resumed after the new year holiday. Eventually tests showed that the new lump was cancerous. They threatened a mastectomy but eventually decided on a week or radiotherapy, fortunately that did the trick. I was on oral chemo by this point. In June I changed to weekly IV chemo (that was hard because for the first time I lost all my hair despite cold capping). I honestly didn't think 2025 could get any worse but round about Xmas eve I started feeling really breathless and occasionally had bouts of sickness. I thought all I needed was a blood transfusion but bloods on Friday showed that my haemoglobin was fine, my oncologist thinks either the disease in my liver has got worse or there is something going on in the lungs. Having an urgent CT scan at some point this week and see her again on Monday. Was due to g9 back to work today but I have said I won't be in for at least this week. At the moment I can't even do one thing without feeling like I've run an 80 mile marathon

It would be good to keep in touch with everyone going through the same rollercoaster

ChocoChocoLatte · 07/01/2025 12:17

Sorry you find yourself in this situation too @Elisebev

BodysBroken · 11/01/2025 07:49

brokenwand · 06/01/2025 11:26

Do you have a prognosis/time frame ?
Have you found that when people see you it is all that they ask about?
Do all your friends & family know or is there some people you haven't told ?
Do people treat you differently?

Sorry for all the questions, i'm going through diagnosis for what may be a very life limiting illness & have been considering these

So sorry for the delay, it's been an eventful few days.

For my type of cancer, there are lots of treatments available, any of which could work for several years or not at all. So life expectancy is impossible to predict. It can be under a year, or 10 years, or (rarely 20+ years). The prognosis conversation would typically happen when you reach the last available treatment, the cancer is overwhelming a vital organ, or you can't get on top of a serious infection. Mine is bone only so far and I'm just about to move onto my second treatment, so I'm hopeful that I have plenty of options and time ahead.

Yes some people do, I'd definitely rather people asked than didn't, but I don't want it to dominate - there's more to me than cancer, plus I want to hear about them too - so I will usually change the subject quite quickly.

My children don't know it's incurable. I'm hoping to be here a long time so they don't need to carry that burden for years. I'm not 100% open, I've never shared on my Facebook wall for example, because I'm friends with lots of school parents etc and I don't want it getting back to the children. But all my familynand friends, including the school parents I'm closer to, know.

I've had a couple of people completely fail to acknowledge it and disappear from my life. They weren't especially close friends and it says more about them than me, so I was annoyed more than hurt. Some people have been a bit awkard at first- not sure how much to ask me about it, reluctant to share their own "insignificant" worries, etc, but I've made clear that nothing is off limits and it's important to be normal and everyone's more relaxed now.

I'm so sorry you're facing a similar situation. Happy to talk further if you want to.

OP posts:
BodysBroken · 11/01/2025 07:53

Pillarsofsalt · 06/01/2025 12:04

Thank you so much for these replies. My relative lives on the other side of the world so not much I can practically do for her. Wishing you all strength and peace x

Thank you, that's very much appreciated. I hope your relaticedoes as well as they can for as long as they can. It's hard being far away. I would just say check in every now and then. I've a couple of friends who send me the odd funny meme, which I find a nice way to let me know they're thinking of me.

OP posts:
BodysBroken · 11/01/2025 07:58

SugarPlumpFairyCakes · 06/01/2025 12:16

What about finances and work? How are you coping with that potential complexity?

Luckily I have a very understanding employer and a job that can be done from home. So I'm working a couple of mornings a week, when I feel up to it. My DH works full time, we inherited a property which we rent out and I also receive a small amount of benefits relating to my cancer and subsequent disability.

So we aren't where we'd have hoped to be by this stage in our lives but we aren't struggling either.

Hindsight is a wonderful thing but I wish so much that we'd had critical illness cover as that would have paid the mortgage off on diagnosis. As it is, we can't claim until I'm given less than 12 months.

OP posts:
BodysBroken · 11/01/2025 08:03

ChocoChocoLatte · 06/01/2025 16:18

@BodysBroken , me too - I refuse to go in for chemo looking like shit. I'm one of the youngest in the units and, because I've been going for >5 years, I know the staff very well. They use me and my ability to chat to help relax other patients, and by looking fairly decent, I think that helps somehow. If I rock up looking like a bag of crap, the staff know there's something up!

Folk like that are funny, aren't they? It's as if your diagnosis gives them permission to ask anything and have an opinion on it. I had a very public-facing role at the beginning and would be a millionaire if I had £1 for every insincere, head-tilted, 'and how are you' inquiry I had—you could almost feel the relief that it was happening to me and not them. A natural reaction - fair enough.

Fortunately, I'm thick enough skinned, and due to my lack of opportunity to go through this privately, I've used it to spread awareness and understanding. Having terminal cancer at 42 with three young children is indeed shit, BUT if it helps one person become more cancer aware, to ensure they have critical illness cover, and to know how to be their own best advocate, then I'll be delighted.

Yes I'm similar in that I generally turn up looking ok, in a fairly cheerful mood, and chat to everybody. I do get a lot of sympathy for being "too young", particularly when people find out I'm stage 4. But I like to think I do spread a little bit of positivity. I've also put many people in touch with local support groups and things.

I do bang on to anyone who'll listen about checking their boobs and critical illness cover (neither of which I had/did).

OP posts:
Tailfeather · 11/01/2025 08:06

I'm so sorry you are going through this.

I have had treatment for primary breast cancer and have a 7-year-old. I lost my mum to breast cancer when I wax a little older than my son is now. She never explained to us how poorly she was so I always thought she would get better. My biggest fear of it coming back is for my son. I often have nightmares agonising of whether or how I would tell him. Have you told your children that it's incurable?

I can only imagine how difficult that would be.

BodysBroken · 11/01/2025 08:16

Catapaulting · 06/01/2025 16:30

Did you really think you had cancer, or was it still a massive shock when you were told?

What have you told your kids?

I tend to be a really positive, optimistic person. Plus I had no risk factors - no family history, I'd even breastfed for almost 6 years in total, which is protective against BC.

So after finding the lump I wasn't too worried, I really thought it would just be a cyst or something. I went off on holiday and didn't give much thought to the breast clinic appt until the day. Whereas my DH is more of a worrier and feared the worst immediately. When it was found to be cancer I was upset of course but still mostly optimistic that I'd have an op, take some tablets and that would be the end of it.

When I first mentioned the back pain and was told about the possibility of secondary BC, that's the first point at which I was really scared. Although I think I was still leaning more towards it being unconnected. So actually receiving the secondary diagnosis was a huge shock.

My children know I had cancer in my boob had a lump removed, and am on tablets and injections to stop it coming back.

My subsequent fractures and surgeries I have explained away as brittle bones. I'm hoping to be here for many years, I don't want them carrying that burden throughout their childhoods, and worrying "mum's going to die" every time I have a bad day.

I do question whether it's the right choice and worry that if things do deteriorate quickly then I'll regret not having prepared them sooner, but on balance at the moment not telling them feels like the better option.

OP posts:
BodysBroken · 11/01/2025 08:17

TENSsion · 06/01/2025 16:43

My aunt was diagnosed with incurable breast cancer 15 years ago and she’s still living a good life!
Here’s to many more years for you xx

Thanks very much. That's just the sort of positive story I try to hold onto. I hope your aunt has many more good years to come too.

OP posts:
BodysBroken · 11/01/2025 08:18

Eyesopenwideawake · 06/01/2025 17:32

No problem! Is it OK to PM you?

Of course

OP posts:
BodysBroken · 11/01/2025 08:25

Elisebev · 06/01/2025 17:48

I thought I had written this post.

I was also diagnosed in 2018 at the age of 42. I will be 7years at the end of January. For a few years I was able to live a normal life with just hormone therapy. It's in my bones and liver). This time last year I found a new lump on my breast. It was an agonising wait till everyone resumed after the new year holiday. Eventually tests showed that the new lump was cancerous. They threatened a mastectomy but eventually decided on a week or radiotherapy, fortunately that did the trick. I was on oral chemo by this point. In June I changed to weekly IV chemo (that was hard because for the first time I lost all my hair despite cold capping). I honestly didn't think 2025 could get any worse but round about Xmas eve I started feeling really breathless and occasionally had bouts of sickness. I thought all I needed was a blood transfusion but bloods on Friday showed that my haemoglobin was fine, my oncologist thinks either the disease in my liver has got worse or there is something going on in the lungs. Having an urgent CT scan at some point this week and see her again on Monday. Was due to g9 back to work today but I have said I won't be in for at least this week. At the moment I can't even do one thing without feeling like I've run an 80 mile marathon

It would be good to keep in touch with everyone going through the same rollercoaster

I'm so sorry you're going through this too. The uncertainty and the waiting is absolute hell. How are you feeling now? Have you had your CT? I hope you're feeling well enough to be able to enjoy the weekend and be a bit distracted from the wait.

Yes it'd be great to keep in touch, I'll pm you if that's ok.

OP posts:
BodysBroken · 11/01/2025 08:33

Tailfeather · 11/01/2025 08:06

I'm so sorry you are going through this.

I have had treatment for primary breast cancer and have a 7-year-old. I lost my mum to breast cancer when I wax a little older than my son is now. She never explained to us how poorly she was so I always thought she would get better. My biggest fear of it coming back is for my son. I often have nightmares agonising of whether or how I would tell him. Have you told your children that it's incurable?

I can only imagine how difficult that would be.

Thank you. I'm sorry you lost your mum so young, that must've had a profound impact on your life, moreso with not feeling prepared.

I've just answered that to someone else above, but no they don't know the severity. It's very difficult as I've literally no idea how long I've got so I'm constantly weighing up not burdening them with it for potentially many years vs not preparing them should things deteriorate quickly.

Please do be aware of and alert to secondary symptoms as there are so many more options if caught earlier. But I really hope that yours doesn't come back.

OP posts:
aodirjjd · 11/01/2025 08:33

This question is a bit medical so maybe you can’t answer it, but I’ve never really understood why secondary breast cancer isn’t sometimes incurable?

if we can remove a tumour for primary breast cancer and then do chemo to mop up any floating cells why doesn’t it work like that for the tumour that was in your back?

Waffle19 · 11/01/2025 08:36

Please don’t feel like you have to answer this if it’s too personal, but how did you make it through those initial stages of the grief cycle to land where you are now? Your situation is my worst fear and I honestly just can’t get my head around people can deal with such news, especially when they have young children.

You sound like a brilliant positive person OP.

BodysBroken · 11/01/2025 08:50

aodirjjd · 11/01/2025 08:33

This question is a bit medical so maybe you can’t answer it, but I’ve never really understood why secondary breast cancer isn’t sometimes incurable?

if we can remove a tumour for primary breast cancer and then do chemo to mop up any floating cells why doesn’t it work like that for the tumour that was in your back?

It spreads through the blood and lymphatic systems.

So if it hasn't spread beyond the breast then radio/chemo will often deal with whatever is left after sugergy, as you say. But there's still a pretty high risk of secondary cancer down the line - I think it's something like 30% - because it only takes a couple of cells to go off into the bloodstream and ultimately settle somewhere else, even years later.

A dose of chemo strong enough to kill all the cancer cells throughout the body would likely to be strong enough to kill the person. So in my case they are dealing with each new tumour as it arises, but they can't stop it from travelling around my body and forming tumours in the first place.

I'm not sure if I've explained that very well!

OP posts:
WanderingDreamingSpires · 11/01/2025 08:52

May I ask if you are on immunotherapy? My husband's much-loved aunt has been told her bc has returned at stage 4. She's got private healthcare and is on some tablets-I don't like to ask too much detail but I was wondering if the treatment regimen would be anything different?

You sound like an amazing person OP, I wish you all the best in the world x

TaraRhu · 11/01/2025 09:35

Thank you very much for sharing this. It's incredibly useful.

How do you feel about death? How do you deal with the fear? Three people I know recently passed young. Two of cancer. I just don't know how they pushed through with young kids.

aodirjjd · 11/01/2025 09:54

BodysBroken · 11/01/2025 08:50

It spreads through the blood and lymphatic systems.

So if it hasn't spread beyond the breast then radio/chemo will often deal with whatever is left after sugergy, as you say. But there's still a pretty high risk of secondary cancer down the line - I think it's something like 30% - because it only takes a couple of cells to go off into the bloodstream and ultimately settle somewhere else, even years later.

A dose of chemo strong enough to kill all the cancer cells throughout the body would likely to be strong enough to kill the person. So in my case they are dealing with each new tumour as it arises, but they can't stop it from travelling around my body and forming tumours in the first place.

I'm not sure if I've explained that very well!

I think so. For context I have (had?) primary breast grade 3. I had one micro spread into lymph nodes but been told radio not required and chemo will kill any floating cells. So that’s where I was coming from. Obviously I have chance of recurrence (about 20% for me) but chance of recurrence is very different to incurable.

I guess the difference is by the time it’s travelled enough to have spread elsewhere there will be lots and lots of lymph nodes affected and you can’t find/remove them all.

Maddy70 · 11/01/2025 10:12

My annoyance is when people tell me "your so brave" I'm not ! prayers for you (I'm an atheist!) etc. And also on a night out People remind you that you're ill. Stop it. I'm on a night out to have fun! My question.... What's the funniest/weirdest "advice" youve had. (Mine was to ditch chemotherapy and do a fast eating only avocado for two months ...

drivinmecrazy · 11/01/2025 10:34

Thankyou for being so open and generous by starting this thread.
I'm sure it helps many of us to ask questions were to afraid to ask elsewhere.

I'm at the beginning of my breast cancer journey.

But the most difficult thing for me has been one particular friend who I would have considered to be my best friend in many ways.
We've been neighbours for more than 25 years.
We've been through bereavement , raising our kids and all that that entails, and the end of her marriage.
We've literally been there every step of the way.

I was diagnosed in August.

Since then she will literally ghost any of my messages that involve my cancer. Any other chatter is fine.

I've talked to her about this and she says she just feels so guilty that her life is going well.

But it bloody hurts! And worse she's a medical professional!

On the flip side I have other friends who have stepped up to a degree I wonder how I didn't see their brilliance and compassion before!

So after my rambling, how do you cope with changes to your friendships, the disappointments and the wonderments?

useitorlose · 11/01/2025 10:45

Wishing you all the best. My sister is almost 10 years on from her TNBC diagnosis and we know she is luckier than many.

My friend's son is 14 and just diagnosed with Ewing Sarcoma, as yet it has not spread. I say what I think will help but really I have no idea.

Berlinlover · 11/01/2025 10:46

What drives me insane is people telling me how strong I am. I have no bloody choice but to keep going, that doesn’t make me strong. Also I live in Ireland so it’s all Catholic nonsense of prayers and lighting candles as though that is going to change my outcome in any way. I’m atheist.

OP do you plan ahead at all? My partner has a milestone birthday coming up in July and booked us a week away in the sun without telling me first. I’ve tried telling him I might not even be alive in July or could be going through chemo again but he just tells me I’m being negative! He just can’t understand that we can’t book anything at all unless it’s last minute.

Starseeking · 11/01/2025 10:49

Had you ever had any breast lumps and bumps checked out before the diagnosis? I ask as over the past 5 years I've been through the 2 week pathway 3 times due to lumps that have been diagnosed as cysts etc.

If you had had previous breast lumps and bumps, what was different about those and the one which they confirmed your diagnosis with?