Its not in the toolbox

Posted May 17th, 2009 by Jane

Its really harder than I expected to not be on chemotherapy. I coined a phrase this week that I keep wanting to cancerworld and normalworld. Its this: “most people run out of life before they run out of treatments. I’ve run out of treatment before life.”

I think this beautifully sums up my situation. In advanced breastcancerworld there is a discourse which focuses on treatments..the names of the drugs trip off our tongues, along with their particular side effects. So FEC and AC are the sicky chemos, capecitibine makes the skin on your hands and feet come off, and taxotere does the same for your is that IV or tablet form? IV hard on your veins but tabs give you worse consitpation.

When one chemo fails its on to the next, and these days they are recycling chemos, so if you’ve had something in the past…maybe if it worked even just a little bit in shrinking tumours then ‘try’ it again. Dont give up, above all don’t give up. “there are lots of tools in my oncologist’s toolbox”…how many times have I read this? Well sorry its not true…I don’t think I have been particularly unlucky in getting oncologists with half empty toolboxes..its the way it is with some kinds of breast cancer…remember triple negative?

Many women with primary breast cancer talk quite a lot about statistics..about the likely improved survival chances taking this or that chemo might make. So people with a 87% chance of being here in 10 years wonder whether taking chemotherapy which will improve their chances by another 2% is worth the candle. It might not be. But again the node positive poor prognosis woman may quickly accept chemotherapy for the chance of a 5% improvement on say 40% odds.

There are websites we look at for primary prognosis. There’s the Nottingham Prognosic Indicator and then there’s adjuvant on-line, where you’re supposed to be a medical professional but no one ever checks. You get lots of colourful bar charts with adjuvant..and often a sobering message.

What’’s interesting to me is that by and large women with secondary breast cancer don’t talk about the statistics. I think perhaps they/I am more comfortable with anecdote. Perhaps not surprising given the statistics don’t look good…average survival with breast cancer secondaries…2 to 3 and a half years. Its more comforting to focus on real women who are alive years further on than that.

Particularly, no one seems to talk much about the difference any chemotherapy makes to the progession of secondary/advanced breast cancer. It is often in tiny incremental bits of time..taxol here and you might get 2.3 months extra, xeloda there and may be an average 6 months..but hey there are people who have been on it for several years. The thinking goes…its worth doing chemotherapy (or any other drug) even if I only get a bit longer, cause there are drugs coming along all the time which might cure. Sorry…no…the state of research is simply not like that. Yes, yes yes herceptin and some of the new hormonal treatments are extending lives, but not everyones life.

I stopped the last chemotherapy because it wasn’t working. I feel much more cut adrift than I expected to. I haven’t ‘given up’ (oh how that phrase hurts and haunts) but I do feel lonely cause I don’t know anyone else who’s run out of treatment before life. Still right now, maybe that’s not a bad place to be.