Considering refusing chemo

[springydaffs]

Triple-X BC. Lymph nodes clear; clear (huge) margin. Post-surgery i am 95% sorted according to my oncologist. Chemo/radio (only available treatment for triple-neg BC) to generally mop up what may be lurking elsewhere. Or may not.

Mangled breast following lumpectomy. The NHS approach feels to me to be a brutal approach. Is an extremely toxic treatment regime really necessary to increase my survival by a very small percentage? [78.5% survival after 5 years without chemo; 85.2% with chemo). It feels all wrong to me.

I think anyone taking responsibility for their medical decisions rather than just going with the belt and braces statistics driven decision making of the NHS is very brave and to be applauded.

Having seen my father's swift dismissal from any sort of care after he refused the most aggressive form of intervention I fully understand the pressure to conform.

I think everyone is different, including how they value immediate quality of life over ultimate length of life and how they approach risk. I wish you all the best with your decision and think you are being entirely reasonable to question and make up your own mind.

Thanks so much for recent posts. You've made me cry!

I have only in the last few weeks been able to say the word cancer. On May 1st I entered another world and it's taking me a while to catch up... to being poisoned, burnt, brutalised, cut, drugged; dominated, boundaries trashed as a matter of course. It takes some getting used to.

In not down on the NHS either! Short form for conventional treatment.

It is a huge shock, I went through it 2 years ago and treatment lasted a year but after that I was back to ' normal', hair grew back, went back to work, lovely holidays etc.

It is a HUGE shock springy. I remember those days of not being able to say the 'C' word. I couldn't even go onto forums like Breastcancercare because I couldn't read Breast Cancer without wanting to throw up!!

By now, I can honestly say that it has made me stronger and it is 'just' one part of my life.

This phase will pass. It will. Whatever you decide to do - commit to it 100% and go for it. Hold your own with your consultant and Breastcare nurse. They have a protocol and that is what they are comfortable with.

Massive shock, Springy - so, so hard especially when you've still got decisions to make. It does get easier I promise!

As I said in my op, chemo/rads are the ONLY treatment for triple-neg. I know that, I don't think my oncologist is being mean or unforthcoming, I don't think there is a wonder treatment somewhere in the world (bcs there isn't). Science hasn't caught up with the hormone-responsive girls yet. ("It's close!" as someone said on a BC support line. Helpful!)

We should share our appalling experiences of tactless/stupid/brutal things healthcare professionals trot out. So bad they're funny (except they aren't). My first oncologist painted an unnecessarily bleak picture (while he was eyeing my eternity ring - perhaps he has proposed to his girlf and has an interest in rings) - not accurate as it turns out. He also listed organs I could get it in in future. Actually said out loud the list. What's wrong with some ppl?! I was a quivering wreck at that stage, mute. The volcano hadn't yet erupted re I wasn't questioning conventional treatment.

I think if you have triple negative breast cancer you would be crazy to refuse chemo. It is horrible while you're having it and yes it can cause long term issues in some cases but overwhelmingly it is a short term experience that you ultimately recover from.

This is not the case with secondary breast cancer. That is incurable and will mean a lifetime of chemo. And obviously a shorter life.

Obviously diet etc could reduce your chances of having another primary breast cancer but will not help if you already have circulating disease which will not be cured by a lumpectomy and which you will not know about until it appears somewhere else. Chemo doesn't guarantee this won't happen but if it makes it less likely, why wouldn't you?

I hear you polyester. But why triple-neg in particular?

No you are not being crazy by considering declining chemo - this is your decision to make. It's just important that you are fully informed.

Individuals all interpret risk/odds/benefit very differently. A 5% survival advantage to some is huge whereas for others it is take it or leave it situation. You must remember that for a chemo with a 5% survival advantage, for 19 out of 20 women having the chemo will make no difference to their long term outcome.

Having said this if I was otherwise fit I think I would have chemo in your situation. Your potential benefit is higher than 5%, and you don't have the option of hormonal therapies.

One option is to start chemo and see how you get on with it. You can always stop.

I

Either I have chemo etc or I address life changes eg exercise, diet etc

Is there some reason why you can't do both, springy? I don't mean upping your exercise regime during chemo but afterwards.

Like all medical treatment, this is a very personal decision. If you're happy you have all the information you need, it is your decision to make. You have no dependents so it is down to what is best for you.

Yes, I will do both if I do accept chemo - I've had a wake-up call after all! My point was that I wouldn't do nothing, whether or not I accept chemo etc.

Is it my imagination, or is 'death from cancer' everywhere at the mo. Everywhere I turn: on the telly, read a book, newspaper, listen to the radio.. Was it always there and I didn't notice it? Like ttc and seeing pg women everywhere.

it was always there just like the pregnant women

OK kundry. I didn't really read that but got the gist. To think I've been avoiding Google all this time...

I sincerely wish you hasn't posted that. Perhaps you'd like a look at my eternity ring?
Some ppl want every drop of info rung out, some don't. Headings are sufficient for me - sensitive headings.

I don't want to know that if it comes back that's it. If it comes back i'll find out then, not now. OR that diet and exercise dont, iyo, make any difference at all except to 'make me feel better emotionally'

Ffs! ENOUGH

Really sorry, I'll ask for it to be deleted.

Yes! I've only just been able to say the word cancer ffs. I DO NOT need to know that if it comes back I've had it - because I CANT CONTROL THAT. if a woman gets pg she may lose it, or it may be a stillbirth or it may be disabled. Although all true SHE DOESNT NEED TO KNOW THAT until and unless any of those hideous things happen. Ffs!

No way to unknow it now, cheers for that. What larks when treatment is over and I'm all clear. How I'll be able to relax!

Because I had decided to have the treatment. Actually felt peace for the first time in weeks. Short lived!

Springdaffs - read this. It gives a much more positive outlook than some posters are giving here. It does however say chemo is the thing to do to get this type into remission. But it does also say there are options and hope if there is any spread. Good luck to you xx

www.medscape.org/viewarticle/711773

Springydaffs Cancer IS fucking everywhere at the moment!!! Im sick of hearing the word!! My dp is too (stage 4 bowel cancer with liver and lymph mets).
Only you can make your decision.
I think dp is ready to stop chemo...but he is utterly exhausted from a year of it. I wont deny its bought us much needed time and his palliative treatment hasnt been too bad all considering, but this is YOUR choice to make. Shitty fucking illness which ever way you view it!! On the plus side my dm was stage 3 5 years ago and still thankfully here.
You will make the decision thats right for you.

springy,this is to cheer you up, but I know two women who are triple negative and both still clear and very much alive 10 years + down the line.

it know it's hard when you ask a question then something you really don't want to hear comes back. Still if you're making such big decisions then surely knowledge is power. You'd kick yourself if you choose one way, then find out later that you didn't know a whole raft of things that might have changed your mind.

The big sod of triple neg is that you can't have hormone treatment (so drugs to prevent recurrence) as there's no point/ they don't work on it. Obviously that's not so good in many ways, as women who can have those drugs get an extra layer of defence against recurrence. Having said that, they don't always work and there are lots of negatives in terms of side effects, so a lot of women who are eligible stop taking them anyway. In the world of cancer, nothing is ever perfect...!

In practice for you being triple neg, all it means is you have to make damned sure you get all the cancer now and let's face it you've most likely already done that, as your op went brilliantly. Only you can decide on chemo or not - it sounds like your team are pushing you that way, so to make your decision knowing as much as you can is a real plus. Don't despair though as triple neg isn't the end of the world at all. It's bloody cancer, and whatever version of that you have it's far from nice, but there is always lots they can do.

This is my experience, springy. Hope it helps

I was diagnosed 15 years ago. It was "hormone receptor negative" - I don't know if that's the same as triple negative.

I had a lumpectomy within a fairly short time of diagnosis. Lymph nodes were clear. Then about 2 months later I started a 6-month course of CMF Schedule C m.macmillan.org.uk/article/name/cancerinformation-cancertreatment-treatmenttypes-chemotherapy-combinationregimen-cmf

I felt pretty rough for the first few days after the second dose each month, but the nausea was well-managed & I was never sick. I did get bad mouth ulcers as time went on but was given very good waxy stuff which sealed them off.

About a month after the chemo ended I had 4 weeks of radio. The usual regime is 3, but I had 2 tumours & one of them was too close to the chest wall to take satisfactory margin, so that area got the extra week.

After treatment finished, for the first 5 years I had 3-monthly check-ups to begin with, then 6-monthly. I think I went on to annual mammograms after that, up to 10 years; now I'm on standard 3-yearly mammograms & officially cured.

The medscape article nikki linked to is very instructive & helpful.

Good luck. It is really scary, especially at the start, & I hated talking about it in RL. I didn't have MN then - it would have been a huge boon!

Yes, I do need to know stuff now - but not stuff in the future that may or may not happen. Just as I don't need to know when I am pg that I MAY have a stillbirth or die in childbirth (statistically true); or I MAY get maimed or killed on a motorway journey (also statistically true).

Signed the consent form today. Making this choice has been gruesome (not good for my health!!). I have for many years practised natural, holistic healthcare when possible (not always possible, of course; gratefully accepted medication). To submit to a healthcare regime that is the polar opposite is extremely challenging - it is SO far in the opposite direction I could laugh. If it were funny (it is not).

But I have and will submit to it. I haven't begun to think about the immediate effects yet - I'm sure I'll have plenty of time for that later. I'll tell you what I don't want to hear: I don't want to hear grades. It makes no difference what grade anything is - it's cancer, that'll do (or was cancer). I don't want to hear eg that my toenails might drop off. If they drop off I'll find out about it then. I get it that my entire body is going to be subjected to high grade poison - to the point I'll be given steroids to cushion my body from the onslaught. I get it. Some of us need to know what's coming, some of us don't.

One of the key things that has influenced my decision is the very real distress of those who love me when I told them I was considering not accepting the treatment. It's not just about me.