I'm really not trying to be adversarial or stir up controversy. I'm simply calling it like I see it. The Journal of the American Medical Association has another article which appears in the the overdiagnosis/overtreatment and maybe we shouldn't call it cancer issue.
I once had a doctor tell me, "Solutions create problems." I'm sure I looked at him as if he had two heads. Stay with me a bit. We'll get back to this.
The article is titled Contralateral Prophylactic Mastectomy for Breast Cancer, Addressing Peace of Mind. Unlike the rename cancer piece, this was written by two doctors. No panel was assembled but nonetheless, the patient voice is being silenced. I am very familiar with one of the doctors and I'm equally impressed with the other. In fact, in doing my homework, I see that there is a study underway to develop methods to improve breast cancer treatment by attempting to find ways to make better decisions. What constitutes a better decision, however, is a highly personal matter.
On Monday evening, we had an exceptionally robust #BCSM chat about the overdiagnosis article. The transcript is worth a glance. The transcript is a prime example of doctors and patients sharing thoughts and ideas. If I'm not mistaken, there were more doctors in this chat than ever before. Laudable. And grateful. We all listened, we all spoke, we all learned.
Mostly, we didn't need someone to get in the middle to hold a rule book. That is my problem with the Viewpoint in JAMA. I learned a new term during the chat. Decisional regret. Sort of like buyer's remorse. And I get it. I really do. Making decisions to permanently alter ones body should not be made lightly. Indeed, such decisions require tremendous reflection on the part of the patient. And first, a lengthy discussion with the doctor outlining treatment options is essential.
Communication between the doctor and patient. Having a good understanding of true risk factors and what is being achieved (or not) by removing healthy tissue is paramount. Seeking a second opinion, or in some sketchier cases, a third, is something that should be encouraged.
And then, it's incumbent upon us to at least attempt to decipher what we have learned. Attempt to make a decision. I agonized over mine. I was told in no uncertain terms that my surgeon would NOT allow me to opt for a bilateral mastectomy until I went home with the answers to my questions and gave it more thought. I had some damn good questions. I found my notes several weeks ago. I shared the pages of questions in a blog I wrote in June.
The solution suggested in this article troubles me. To stop the overtreatment and the unnecessary removal of healthy breast tissue, the authors think it might be a good idea to have the insurance companies step in and refuse payment unless there is a clinical indication for doing the surgery. THIS angers me. Why would we muddy the waters by adding a third party into these discussions? Why would we turn over decisions to someone at a desk, likely hundreds of miles away, reviewing charts and looking for any reason to save money. Refusing surgery is a great way of saving money. For Sure.
This isn't patient centered anything. Basically, it might come down to this. We are diligent. We are thoughtful. We have good reasons for choosing "the big surgery." Our doctors explain the risk factors, we process the information, we understand the full ramifications of our choice and we are still confident that is the right choice for our set of circumstances.
It may not fit the medically necessary criteria but it may fit with the emotionally necessary criteria. Maybe I want to look like I have a matched pair. Maybe I don't feel like I can deal with the scanxiety of having every little thing examined with a fine tooth comb because, after all, "you are a high risk patient, we can't ignore that little speck, we will repeat the mammogram in three months." Maybe I just don't want to go through all of that.....
I hear your evidence based science and I'll raise you five intangibles. Please don't insult me as an intelligent woman who has done her homework by throwing your arms in the air and hiding behind the cloak of, "this won't be covered by your insurance." That is a solution that will create many problems. There will be those who fall in some sort of gray zone who will have the added the stress of fighting insurance companies because that's just what one needs when entering the "you have cancer" nightmare.
What does this feel like to me? It's patient centered care and it's educating and empowering us. Right up until we decide that we want to do something the doctor feels is wrong. In an instant, we are engaged, empowered and educated patients who will quite quickly be removed from the shared decision making process. No longer partners in our care, we will become pawns in a medical maze.
That's just wrong and that's one giant step backward. It's because I said so thinking. It's pretty insulting. It's dismissive and it's closing off the communication that is at the heart of being an engaged patient.
I would hope those in the medical community who feel this is an acceptable solution to a very complex problem will rethink their position. Because, frankly, it's not acceptable to those of us whose bodies are on the line.
Our voices matter.
Most of all. Our voices matter.