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.

*The process of making this choice. Ie the last few weeks

springydaffs you sound tough as nails but terrified at the same time, just like any one of us might feel. I agree totally about stress causing us to become unwell.
My mam cared for others for many Years without thinking of herself. She indured years of stress because of my d dad
In the end stress and heartache made her sick.

She was diagnosed with ovarian cancer June 2012 and died November 2012

She had two rounds of chemo but it made things worse. I feel we would have had longer with her but the chemo weakened her and killed her sooner.

I wish you so much luck springydaffs

Springy, good on you - your choice and you've made it on your terms. If you want to ask anything along the way or just need someone to rant at, moan at, scream at, then feel free to get in touch. Those that have been through it get it best I think. I know this might sound odd, but making the decisions and knowing what's next for me was a massive step forward. There's something gnawing about uncertainty, but you know now, so you can just hunker down and plot to the other side. You're going to be fine. Life's ahead.

Thank you smee. What a lovely post.

Yes, what I'm dealing with is the very next step ahead. No more than that. What's ahead is shit [I can't believe I've consented to being poisoned and burned!] and I'll deal with it as it comes along. A few pointers - low-level pointers - and that's all. I wouldn't say no to encouragement, all types.

I don't need to know I might die, it might get worse, it might come back [kaput!], somebody else died, somebody heard of somebody whodied; it didn't work, it might not work, it didn't work for somebody else; somebody else, sadly, got secondaries and died a peaceful death. Why would I need to know that if it might not happen? Is it a preparation thing?

Because it might work, I might not die, it might not come back (and, if it did, I might get through that too), it might not be as gruesome aspredicted; if it is as gruesome as predicted I might get through it OK. I don't know yet which it's going to be; I'll find that out later - and deal with it then.

Worse things have happened in my life which dwarf this. I am ROYALLY pissed off, I am dreading the treatment. That's about it (so far).

Thanks to all who have posted, accompanying me on this part of the journey

Best of Luck in your Journey, Springdaffs.

Springy, I sincerely wish you well. I made my decision to go ahead with my chemo, albeit in another country and not on the NHS, following a spookily similar history (diagnosis in May, lumpectomy, triple neg) and this thread is as close as I will allow myself to reading anything about it, let alone Googling. I'm going 'belt and braces' at the thing - chemo, radio, plus lifestyle changes, and to hell with the statistics. The main thing is you're seeing it as a journey, dealing with each moment as it comes, and I hope that you can stay positive along the way. Hugs - gentle ones.

Ps are you the same Springy from the FW FB group - you'll know what I mean if you are...

Springy you helped me so much in the past I'm so sorry to read what you're going through, you sound as lucid and down to earth as ever, I hope today has been an okay one

Thank you avocado

I am feeling extremely sorry for myself if truth be told. I loathe this stuff, I loathe the whole vile thing.

But hey! Be positive!

FUCK OFF

I look like Methuselah, my wig is crap (s,m,l anyone? Small head big brains though , LARGE wig). I told myself it's 'only' 6 months-ish and if I can be pg for 10 a number of times then I can do this. Turns out I can't. The days are getting turgid. I used to balk at cancer - actually chemo to be precise - being called a 'fight' but it bloody well is, I've changed my mind. Getting through every day is a fight.

Disclaimer: just had 2nd fucking chemo ("You're 1/3rd of the way through!" FUCK OFF )

I just think we're going to look back at this treatment in times to come and shake our heads at the hamfistedness, archainness, brutality of it: mediaeval! So brutal and kind of male . come to think of it, none of my oncologists are female and the whole shebang, the whole approach, is kind of MALE. I am glued to the cancer ads, they are a comfort [bleak, Arctic, windswept terrain; lost, lonely]

Like I said, major pity party going on here. Perhaps I need to reframe this - butterflies? Light shining, nay beaming, into dark, dark cancer cells? Not that I have any; they were hacked out by a male surgeon and sewn up crappily, my boob is a mess. Haven't they heard of darts ffs.

Apologies to anyone offended by this. I know I'm lucky (in the scheme of things)

Oh Springy Chemo is a fucker isn't it ... are you having 3 FEC and then 3 Taxotere (sp!) My mum had the 3 FEC and then basically told the oncologist to FEC right off!! they persuaded her to have one more, this was 3 years ago, she says she will live with the consequences whatever they are, it was an informed decision. Keep on keeping on springy

Springy I like your writing style

Yes. Dreading the T! I feel so brutalised

I have ZERO support from the PTB. They do what they like, when they like, how they like. I feel so taken over - and I am being! They are only interested in the science. I get that they're committed to it for good reason though; that they mean well and aren't there to be people people.

They've got me categorised, though. The MDT thing is a good way to keep me in a manageable, categorised box. All good practise though, for good reason! All the better to keep them controlled eh: passive, compliant.

And most are, too terrified to be otherwise. But I am thinking of the mortality thing, whether all this is worth it. (I mean it, it's not pique.)

hi springy

I just wanted to say something because I really feel for you.

When you say "it's not pique" - I know it's not. In your position I would likely refuse - as much as one can know without being in that position - and my dad had some medical treatment on similar margins and told me "I am only doing this because of your mother".

He has actually exceeded expectations in those percentages but ironically, seeing what he went through made my mum realise she would likely refuse in such a situation! Now they've agreed that whatever happens next will happen and no one will interfere with anyone else's decisions about medical treatment.

I'm alarmed to hear they put so much pressure on you about this treatment. It might because my dad never really considered saying no, but I was at many of his consultations and it was always presented as "here are your options" with a caveat about the stats attached.

anyway, to you and I will be thinking of you.

It's probably age, Lorelei. I'm not that old - well, not young but not old either. Staff probably think I have a lot to live for and bamboozle me into treatment. What I mind is they assume I am being willful, that I'm a slave to willfulness even to my own detriment, that it is out of my control.

They are so used to patients rolling over with gratitude. Terrified patients.

This is hard to say but I'm not terrified. I am frightened but I'm not terrified. I've had a very hard life and this feels too much, I feel forced along this path. I'd be so pissed off if I copped it anyway after all this. This is so contrary, it feels all wrong.

I'm not saying I have a death wish. I want to live to a grand old age and would be so disappointed if I can't do that - bitterly disappointed. But I don't hold survival in a death grip.

Oh I see. That's interesting - dad was 62 when this happened.

Those staff don't sound too big on people skills!

We're not too far off then age-wise.

He's a man. I'm a woman on my own.

They are indeed extremely crap at people skills. They think they're great though.

springy - I had a feeling you were going to say you weren't far off in age.

I'm curious to know why you mention gender and being a woman on your own? I'm a woman on my own, hence my query.

They just wouldn't behave the way they do to a man. I'm certain of it. Also if I had a partner (a man) they wouldn't make the assumptions they have.

I saw an oncologist at the beginning - a young guy. He was brusque and brutal, strongly put on the pressure - eg detailing if I didn't have the treatment now it could come back in [listed organs]. He actually listed organs. I was astounded. He also said 'one' cell had been found in the vascular system (I assume the margin) and that indicated it was travelling around my body. He said other awful stuff but by that time I had tuned out with shock. He could well have said the same to a man, granted.

I asked for another oncologist and had to wait a bit. The new oncologist (recommended by a medic friend who is going through the same process, same dx) gave me a much more accurate picture: huge, clear margin (no 'one' cell in evidence); clear sentinal (sp?) node. Very, very good profile. I saw him on Thursday and the chemo was due to start the following monday - I wasn't ready. I postponed treatment to research a bit, look at other (alternative?) options. That day I had 3 calls from oncology to make an appt with the new oncologist the following day. 3 medics were in the room and I felt very pressured. I asked for data and the oncologist extremely reluctantly printed up data - which showed that survival % is very slight with chemo/radio.

I was crying at the initial appt with the new oncologist - he said irritably 'why are you crying??' I had no answer to that - I can cry and talk and listen! I said not to worry, he could carry on and ignore it.

I feel I am being treated like I'm... silly. Wilful. On my arrival at my last appt with an oncologist the breast care nurse said I'd be seeing a different oncologist. Didn't ask, told me this is who I'd be seeing. She was tense - expecting me to kick off? A nurse accompanies me in all consultations despite me asking for them not - most people I know going through this don't have a nurse in consultations. I feel their approach is that I have to be watched. That I don't know what's best for me and they have to manage me.

I have also been seeing the psychologist. Big mistake! ZERO confidentiality! Everything I say is relayed back to the team! I had no idea this would happen, thought it was a private space to bash out how I'm feeling about the whole process. She is obstructive and won't confirm what she will and won't share with the team.

I feel controlled by this team. Their approach seems to be that they have to manage me. Because I am not rolling over and accepting with gratitude what they have to offer. I am respectful - both in approach and I also greatly respect their considerable training and expertise. But what happens to me is my choice. This seems to be where the conflict hinges.

I don't think this would happen to a man, no.

springy "But what happens to me is my choice. This seems to be where the conflict hinges."

actually from what you describe, I think it's more likely that dad was treated better because he never questioned anything. I think they assumed he'd go along with it, he did, and that was that. I was present at many of his appointments - though some people do think medical professionals are nicer when the patient has a companion! - and found them sensitive and fine.

What a stupid person to ask "why are you crying?"

II just remembered, my friend's colleague's mum recently refused some treatment for leukemia - not sure what exactly - and she got a lot of grief about it. I suspect if a man asked a lot of questions or if they considered him "wilful" they would treat him the same.

I don't like this expectation that everyone will fall over themselves to get their lives extended, or the idea that medical professionals get to make that decision for you. It worries me.

but anyway...

I hope you're getting along all right with treatment at the mo.

Springy I think it helpful to read about other people who have done what you are contemplating. Chris Wark's blog on how he and others changed their diets and lifestyle instead of having chemo, which by the way I would refuse.

I had a tneg grade 3 removed in April 14. No nodes and no Brac Involvement.
Its a really confusing time and hard to take in all the info. I did find that whenever I asked a question the do you need counselling? Question was rolled out. No I need the answer to my question so I can make an informed choice became my standard answer.
My stats were 84% after surgery with FEC giving 86% and T and extra 87% with the side effects of T being particularly scary this was my main worry. I refused to Google and decided that given that our lovely Tneg does seem to like to be stubborn I decided on the FEC and left the T decision until I finished FEC. Although it was not a nice experience I managed to continue working as a child-minder and only had a few days off, my bad days hit at weekends. The T was worse for me, but not everyone finds this I had one round and after a week it effected my eyesight and I lost feeling in fingers and toes, unusual in round one so after an extra week off it was decided to stop, I still have tingling fingers and toes a year on. But I know I tried it and should The C return I wont be blaming not having chemo. After rads I was told my chances of reoccurrence in that breast had gone from 1 in 3 to 1 in 6.
Apart from the tingling I'm pretty much back to normal now, just with short hair and a determination to get out and do instead of putting life off.
I don't think I would have the courage to turn the chemo down I think your very brave to think about it but you have to do what you feel is right for you.
I can say that chemo is a scary journey but once started it was doable and easier than I thought.
I wish you luck. If you want to chat pm me.

I cried at every appointment do not feel bad about crying make a list of what you want to know before you go and insist on an answer. I also agreed to a psychologist appointment in the end and she was lovely I talked through all my questions and reasons for them and she agreed she would want those answers and that the frustration and emotions would make someone cry in the appointment but as I was sleeping and functioning normally and had logical reasons for questioning chemo I was normal and did not need counselling.