For those who do not know, I moderate an advanced prostate cancer on-line support group. Members are both men with advanced prostate cancer and many of their care givers. There was a recent conversation I want to share about specific “off label” and “out of the box” treatment strategies, specifically about oncologists not knowing about the treatment possibilities and their reluctance to use them. I thought I would share this particular post:
This is why it is important for all of us to learn about these alternatives and bring the information to our doctors. Among the most important goal of this group is to educate and help people to take charge of their medical care. This includes learning about “out of the box” treatments.
We need to learn about these options and then bring the information directly to our doctors. Our job, to extend our own and our partners life, is to educate our doctors, expand their horizons and knowledge base, get them to be willing to go “outside the box.”
This can be a difficult task, first we need to educate ourselves, then our doctors. Many of us will experience significant resistance from our doctors, but we need to remember that we are trying to extend our own life and the life of our loved one. What are we willing to do to accomplish this goal? Would you run into the road to push your loved one out of the way of an on coming vehicle? Arguing with your doctor seems to be less dangerous, but for many of us perhaps scarier! But, should it be? Why is it?
So, what are your next steps going to be?
Five years ago, when I suggested to my oncologist that I wished to go intermittent (ADT) he was very resistant. I brought him some of the current research to read and told him that I understood if he was concerned that my estate might sue him if it didn’t work. I offered to sign in his notes a statement that he recommended against intermittent therapy and that I was doing it against his advise. He passed on the offer, I went intermittent and I am still alive today to share this story.
Our doctors can not be “all knowing.” That is an unrealistic expectation, but we can and should expand their knowledge base. Our medical care is a joint responsibility, our doctors should be our advisers and our partner, but we need to remain the captain of our ship. Don’t forget, it is the captain that is the last to leave a sinking ship, so we have every right to do everything we can to keep the ship a float.
Joel T Nowak, M.A., M.S.W.