To chemo or not to chemo ?

A little update.

Turns out I did have a fluid collection near the liver resection site and it was infected, so it had to come out. That involved lying in the fetal position, sedated, while (using ultrasound guidance) they push a very, very long needle in below my ribs, up to the top of my diaphragm, where the collection was. They drained out 200ml. I was just in hospital for one night. That was all a couple of weeks ago now and it still hurts to cough, sneeze or yawn - but in the scheme of things, no biggie.

Here’s the bigger issue. No doctor can tell me whether I should do follow-up chemotherapy or not. I’ve had 2 opinions so far, and a third booked for early April, not that I think that is going to be particularly useful. In theory I am “cured” again because I have no detectable cancer, but everyone knows that is bullshit. There is obviously still microscopic cancer in my system otherwise I wouldn’t have had the recent recurrence. There is no evidence that adjuvant (post surgery) chemotherapy has any impact on microscopic cancer. There is also no evidence that using chemotherapy now will lessen its impact later on.

So my option is to do nothing, or do six months of chemo. If I go with the chemo option I would be on a different regime. Last time I did the Capeox protocol, this time I’d be doing Folfox - delivered via IV twice a week and every two weeks I would have to be hooked up to a pump for 48 hours. The pump is connected when I come in for the IV infusion and then I have to come back two days later to have it disconnected. This cycle would go on for six months.

It’s a tough decision. Do nothing and run the risk that cancer explodes again in places not suitable for surgical resection. Most likely places are liver again, lungs and brain. Regret not doing chemo. Or do chemo, suffer all the side effects, and have no idea if it’s doing anything. Or perhaps worse still, do the chemo and the cancer still explodes.

This is the 1st major treatment decision where medicine has no ‘standard practice’, where a doctor can’t tell me what to do. Instead I have to make the decision myself, and I’m finding that surprisingly disconcerting.