Chemo dilemma

Hi there @Red1....Aaah the old stats dilemma. One percent is one percent, depends how you look at it. A 1% discount off purchases at a shop, is deemed insignificant. However, 1 % of pupils in average school of 1000 pupils is 10. If a crazy person ran around with a gun and shot ten pupils, the public (and the parents, family and friends) of the ten children would think that same one percent to be high. The question I would ask myself is this. If the cancer did in fact return, would I regret not having had that final dose? Even taking into consideration the potential further risks? My reasoning to myself was that I'd rather go into my box later with poppers or press studs on my clothes, than sooner with buttons. (One of their benchmarks for grading peripheral neuropathy in the hands is, can you do and undo buttons)?

Thanks AllyJay..I was originally gonna opt for no chemo at all..but being in my early 40's with young children thought I would do what I could to keep this way and agreed to the 4 rounds of TC, they where going to stop this after round 2's allergic reaction but I went one more...so it's not so much the statistical factors weighing on me but a fear of not being able to walk or drive and a worse reaction with permanent side effects vs have I done enough..my head wants to do all it can but I fear my body may have been pushed to its limit..so confused.

Aww.. @Red1, so sorry you have this dilemma. You are the only one to live with your decision and whatever happens to your body. It’s a sucky choice to choose between treatment now and possible long term problems. I’ve typed up many replies.. but in short, if it was me, you’ve done a great job with the treatment you’ve had. I wouldn’t risk more problems with your walking, driving, etc unless the treatment team said the next round was absolutely essential. I would be thinking I need to drive, walk, etc to participate in, enjoy, and look after my family. I was 42 when diagnosed and tried to balance treatment and potential side effects with quality of life. I want to participate as much as possible in what time I have. I don’t know when my end date is, or if cancer is all gone, or will come back, plus tomorrow I’ll be doing risky behaviour like driving and crossing the road... Got to keep on living the best life I can. Best wishes for your decision 💕💕💕

Thanks Millie, you sound very wise and your thoughts resonate with me, I do need to walk, drive and live the best life I can too, really appreciate that you put that perspective on it...starting to feel more relaxed with the idea that the next round might be too much for my body and it's telling my stubborn brain it really has had enough...Something has finally clicked that all the uncertainties make navigating a truly right course impossible and I need to factor that in, thankyou:)

Oh @Red1, these decisions really suck. On balance, I think pulling the pin on the chemo now is probably a wise thing. But only if you'll have no regrets should your cancer return.

At the beginning no one explicitly says to you that we're going to have red hot go at curing your cancer but your quality of life afterwards could be rubbish. There's fine print of course, but at the start most of us are naturally all 'just get this thing out of me'.

I had TC. I had an allergic reaction to the Docetaxel but it was handled with Phenergan and another drug or two. I certainly didn't have the problems you are having, however it got into my hands rather badly, and just over a year later they have not fully recovered (though Letrozole is contributing to that).

At diagnosis my four kids were 17 down to 9 years old. We do have responsibilties outside ourselves that drive these decisions. However, while it's all very well to focus on survival, if you are disabled and unable to look after your family properly, to live your life with the stress and strain that would entail, it becomes a big ask indeed.

I agree with @"~Millie~"  unless your team say you must do it, I would not do the fourth cycle. I want to emphasise that's me though, and a viewpoint out the other side of active treatment, as a person having a difficult time in survivorship. Look inside yourself. How much physical adversity can you bear with equilibrium? Will the decision you make, either way, keep you awake at night. Nothing about BC is easy. Big hug, K xox

I don't know much about the type of chemo you're having as I had AC-T.  One of the things that I came to realise is that chemo is a pretty blunt instrument and the dosage you're given is not to do with it being the minimum safe dose but the maximum safe dose.  So, quite possibly (and I say this with no experience of TC), 3 out of 4 might be all that is required (unknown) with 4 treatments being the maximum the average body can reasonably tolerate.  I started getting PN in some of the toes on my right foot around taxol 8 or 9.  By the time I reached No. 12, it was going up both legs and in my fingers.  While most of it recovered fairly quickly after chemo, the original PN response in those toes remains.  I can't answer for you but, also having school-aged kids, survival has always been paramount for me.  However, being crippled with side effects is not much of a survival.  If it were me, I would question my onc closely about how much benefit is KNOWN for having the complete 4 treatment cycle, and unless it was significant, I would pull the pin on it before the PN has the possibility of causing permanent debilitating damage.  If the benefit is known to be huge, I would at least ask about a longer break to let symptoms settle down, but possibly still stop.  But I can't really answer for you.  Whatever your decision, it has to be something that you can live with.

My biopsy doc did a biopsy of the tumor but under ultrasound he said he wouldn't bother doing the sentinel node as in his opinion it didn't look involved. A fortnight later they did a mastectomy and found the sentinel node was also positive for cancer cells. A fortnight after that they took all of the lymph nodes but none were positive. I had to undergo 4 lots of chemo and had a reaction on the second dose. Oncology seemed to be of the opinion they didn't really care what side effects I got after each dose, just as long as I didn't die during the infusion and turned up for each dose. I to this day think that positive node might have been misdiagnosed in pathology and even if it had cancer cells they had already gotten it all on the first surgery. I am now hypersensitive to any drugs at all.

Hullo @red1 I am not in your position, thanks be, with young children and still so young yourself, but I believe at any age you need to listen to your body. Your cells are talking to you. Chemo is a very blunt instrument as @Sister says and cancer is a strange and cunning adversary. Not to be depressing but in some cases it recurs no matter what chemo and other treatments someone has. It's a gamble, and those statistics have well-known limitations being mostly based on five year survival rates. It's also very important what your oestrogen receptor status is. If you are positive then you will go on hormone blockers of some kind which will be an added survival factor. If not maybe the fourth dose might be worth it. But quality of life has to be considered. So many of us here are struggling with that, chemo or no chemo. Best wishes and a warm hug.

Wow thankyou all for sharing, it has helped me put a lot of things into prespective..its been such a taxing process both mentally and physically and your kind words and insights have helped relieve some of that..I believe my body has had enough and my mind has finally accepted that..I am at peace with my decision to stop chemo and will focus on the upcoming radiation and feeling better!...fingers crossed!!

@Red1 Making decisions has become a major drama since chemo. Well done. I also refused some treatment as my body had enough and couldn’t cope with more. I finished all my chemo treatments and then balked at radiation. I can live with whatever outcome, as I did the best I could.