Call me Persephone

Yesterday, we had an intelligent, helpful meeting with an intelligent, helpful oncologist. (Credit where it’s due.)

The gist of what we learned was this:

The original herceptin trial had 3 arms: no herceptin, a year of herceptin, and 2 years of herceptin. The survival rates from the 1-year arm of the trial were so dramatic compared to no herceptin that a year became the standard of care. The two-year arm is unlikely to continue/report becaue of the strength of the one year results.

Then there was the Finnish study I told you about, which found a 9 week course of herceptin to be as effective in preventing the return of a cancer as a year. This and other evidence prompted the oncology community to consider that herceptin may be being over-prescribed, and led to the Persephone trial, which is currently looking at survival rates of 6 months versus a year of herceptin, and is likely to report in 2014.

All of this was useful.

A diversion: in our jobs, Alan and I often work with organisations when we’re there to support change, help make decisions, or work with teams that are having difficulty. The first stage is always to ask questions, and what we often find is that during a meeting we get a lot of helpful information. But the real insights often come as the briefcases are being snapped shut, the notebooks closed, the hand is on the door. When we hear, “I don’t know if anyone else has mentioned this, but…”, or “What you might find is…” or “There’s one more thing…” we know that we’re about to learn something that’s really key to the change that we are trying to make.

So. We thanked the oncologist. We said how helpful the meeting had been. I put my notebook into my bag and gave Alan his pen back.

And then the oncologist said, “Of course, if you came to me now, I would be recommending you for the Persephone trial, and then there would be a good chance that you would only be having 6 months of herceptin anyway.”

That was what we needed. In a slightly different universe, the medical profession would be sanctioning 6 months of herceptin. That, together with the side effects, and the fact that we have all pretty much had enough of the whole hospital/treatment/cancer thing, means that we have made the decision to stop herceptin.

It’s not a “Yessss!!” air-puncher of a decision. But it is a decision that we can live with: should the cancer return I think we will be able to look back and still feel that we did the right thing. And the decision is not simply to stop herceptin. The decision is to be well. The decision is to get on with living in a world that doesn’t have cancer at the heart of it. The decision feels right.

(And the dragon likes the decision. She’s somersaulting in the sky. If you live in the north east and have a look out of the window you might just catch a glimpse.)