So yesterday, after my deeply profound post on the long term affect effects of chemo, I went to a conference for people living with cancer. I sat through a couple of sessions on the state of cancer care and its future which were very interesting.
They were talking about new treatments coming out - for example additional treatments other than Herceptin for those who are Her2 positive. There were also some discussions on radiation treatment advances and how the new 3D and IMRT machines allow for more precise delivery of radiation - hence sparing nearby body parts which do not need to be scorched.
There was some conversation of things that are in clinical trials should be available soon or are even in the first round of human trials. So I started thinking about why are there no clinical trials for us longer term people? There was a clinical trial I wanted to participate in - for the recurrence vaccine. While I am not a fan of needles, I would be happy to get a series of shots if it could reduce my chance of recurrence. Then I found out it was only for people who were less than two years out from treatment so I was not eligible.
I understand that they want to have precise groups of volunteers in clinical trials which meet a specific set of criteria so they are comparing apples to apples with fewest possible interferences. These become very small groups. But it seems once you are through treatment, there are no trials available. And that seems wrong.
We are still people coping with a cancer diagnosis and once we get through treatment, we are excluded from research. No one seems to care about the long term effects. Too may potential variables which could interfere with a trial have entered our lives so no one wants to do any research with us. But we still count.