Saying no to treatment?

Posted December 3rd, 2008 by Jane

I was musing the other night on all the chemotherapy I’ve had. Remembered the first lot, back for primary breast cancer, October 2003-February 2004. 6 doses of AC (Adriamycin plus cyclophosphomide.) Side effects probably the worse of all the chemotherapies I’ve had…even some of the dreaded nausea though as promised the anti emetics did work for me.

The story of AC is really the story of all my chemotherapies. They don’t work. After three cycles I was scanned and the 4cm lump now measured 3cm and it was softer…so deeming that a ’success’ I carried on with 3 more. In March I had surgery and guess what the lump had grown and stretched to an ill shaped 5 cm and and there was still ‘residual disease’ in 23 of my 25 removed lymph nodes. Not good.

I will never know if taxotere…the drug I had after surgery..for 4 cycles kept me in NED (no evidence of disease…preferred term to ‘remission’) for the next 2 and half years or not. It could simply have been the surgery and the radiotherapy and the taxotere may also have been a waste of time. Certainly it is taxotere’s sister taxol which has failed so spectacularly the last 3 months.

So here I am…chemotherapy connoisseur..through AC, taxotere, vinorilbine, xeloda, carboplatin, gemcitibine, and taxol..about to ‘try’ vinorilbine again tomorrow cause the man from the Marsden said I should, cause my tumours shrunk by a half after 6 cycles last year (and instantly grew again once I was off it.)

And a couple of days ago I just thought ’sod it I’m not doing it, what is the point?’…and there still is a very big part of my intelligent self which thinks that, but somehow I can’t not do it and I don’t know why. Among people with advanced breast cancer I have noticed that hope is equated with treatment options, and that hope lasts only as long as the options. I often wonder though whether we really think about what we are hoping for. With chemotherapy it is often such miserable benefits..maybe 3 extra months here and there over not taking the treatment. Oh yes I know women who have been taking the drug xeloda for two years whose liver secondaries have for now melted away, and women now having their 80th three weekly herceptin infusion, doing well, when five years ago they were almost dead.

But that kind of hope in a drug actually doesn’t exist for me any more (if it ever did). When vinorilbine fails, or I get too exhausted to continue or my bloods are too poor to go on, there are no more drugs left for me…apart from maybe an experimental trial at the Marsden..which is like being a lab rat for the future.

For now I am not refusing the treatment though I think that’s because I’m perhaps not brave enough to do so. I don’t think my decision to continue is particularly rational or the best one, but it does feel like the one I must take for now..even for just one cycle, to see, to feel the hope of the tumours shrinking..just maybe…though dread to think how poor must be the statistical chance that they will.

There will be a time, and soon, when the treatment options are exhausted, and then I know hope has to be reframed in some different kind of way..about hope for the cancer to continue being slow, hope that my damaged arm might continue to be ‘useful’ ,hope that I may get the ‘many many months’ or more, that my oncologist spoke of.

Several friends have recently asked ‘Why don’t you go back to the Marsden?” as though since August the Marsden has discovered some new and different miracle drug they didn’t know about then. I may well go back to the brilliant man at the Marsden to talk about trials..but it isn’t because I think he can save me.