Decision just about made



Posted March 20th, 2009 by Jane

My CT scan results got a bit lost between the radiologist (on holiday) and the oncologist so I waited much longer than usual but oncologist tracked down scan report and rang last night. I haven’t seen a written copy of the report yet so just got the verbal summary. There is still no spread to major organs..lungs seem OK and liver too. But there is ’some slight worsening’ of tumours in my neck etc and this probably indicates what oncologist, R. and I thought already..that the chemotherapy worked for the first three cycles but is now failing…a fairly standard pattern for me.

I had a long talk with oncologist about what to do and am seeing her on Tuesday. I am pretty sure I have decided to stop chemotherapy and take what she calls the ‘hedonistic route’. I should get a ”window of opportunity” to feel well for a while..get some breaks, stop feeling awful with the side effects of treatment. My fear if I continue on chemotherapy is that I continue to feel dreadful, the cancer spreads (as it will eventually) and I then never get a window. R. and I actually feel quite relieved…I know though that as the tumours grow my arm will swell more again, become heavier and make it more difficult to walk without pain, my chest and neck will get more discoloured, and I worry constantly about what further damage round my neck. throat, swallowing, voice might happen.

I have written in the past about going back to the Marsden and talking about Phase 1 trials but right now that just feels like additional stress. I don’t want to spend time trailing off to the Marsden to test out the dosage and side effects of a possible drug for the future which is highly unlikely to do anything for the cancer I have right now.

As I’ve written before I really am at end of standard treatment options. I am passionately not taking this decision in a ‘giving up’ style..it just seems sane and rational and the best thing for me given the unusual things about this cancer…it is spreading slowly; its triple negative; its not in major organs yet; no other chemotherapies and there really aren’t any..except try pegylated doxuribycin which is like the C in AC which failed spectacularly for me at primary bc stage. Non approved drugs: avastin, sutent, abraxane, ixempra have poor trial results particularly in heavily treated cancers like mine so I’m not mortgaging the house, going to the States or setting up a fighting fund. And apricot seeds aren’t even on the agenda…

Today I’ve been at another meet up with other women with secondary breast cancer. (See September posts). I tried out my decision on a couple of them and thank you kay123 and manon for your understanding. And thanks to Christine MH for sound advice on an earlier post I made about this.

Sadly I got the scan results after I’d had chemo yesterday morning so will spend the weeknd feeling lousy. I regret this but not the other 40 or so cycles I’ve had…I reckon you get nowhere by doing what ifs around cancer and its treatment. What’s done is done, what decided back when can’t be changed. I feel though that I’ve done my dues with chemotherapy…a strange and poignant moment.