“Don’t talk to your friends with breast cancer”

This  recent “episode” of me exploring the discussion boards pertaining to prostate cancer has been quite revealing. It has been a learning experience both from the standpoint of a doctor and as a patient. I mention in my book that I thought I was a very sensitive and intuitive doctor with my patients before I was treated for prostate cancer. Then I realized that I had a lot to learn about my patients and that having been one I was a better doctor. That was about three years ago. I write the book and make the point that I have been a patient, that I was a “urologist with his own” disease. I began to think that I had it all as a doctor relating to patients; I treat the disease, I have had the disease, now I’m ready to be the consummate urologist. An then the discussion boards and my discovery of them come along. At first I was very intrigued by the threads,(a list of questions or comments that in turn are in turn commented on by other participants). First of all, I knew all the answers, that was neat. Then I noticed that everyone was brutally honest about their particular problem and that everyone was sincerely trying to be supportive. I read some pretty shocking stories about what the what the prostate cancer patient goes through. There is a adage that urologists use to tell parents of bed-wetters, to make sure that they do not punish their children for wetting the bed. It goes, “even the lowest of creatures will not urinate where they sleep.” The point is that sleeping in urine, urine in general on your clothes and skin is universally agreed upon to be pretty much despicable. It’s gross, it smells and if you were once a proud alpha male and have been treated for prostate cancer and you are now wearing diapers, well it “don’t get no worse than that.” So back to the discussion boards. I note that several questions are going along in the wrong direction. A responder to a thread tells another that they are experiencing a particular disorder and that he should go to webmd to a link he provided to help him understand and solve the problem. Well what he mentioned was a well know disorder of voiding that is most commonly seen in females. I comment that what the guy is experiencing is something else ,recommend an over the counter med and mention the drugs that his doctor could consider to correct the problem. That’s where I went wrong, there and the fact that I referenced something on my website( a link to an article) that I thought would be helpful. I was cognizant that I mentioned my site and book, but in the process I was, I thought, being helpful and correcting advice that was clearly wrong and not helpful. So I get kicked off the site. In inquiring what the issue is I learn the rub. These are peer to peer sites, they don’t want doctors and discourage medical advice. It has to do with being supportive and probably legal issues of issuing medical advice over the internet. I have talked to all involved and am going to try again to offer comments but solely as a patient. I am Okay with that and I still think I can be helpful and serve a purpose. I’ll be a “smart” patient. But all this is the set up for what I want to post today.

A couple of things. My wife: she agreed that there should be sites without doctors. She has said to me in the past that the maddest she is at me is when I have a solution to her problem right about the time she starts to explain the problem. “John, you don’t listen, you jump to the answer before you have heard the problem. You are soooo smart aren’t you.” This usually happened with children issues and no other issue has trouble my marriage through the years than this fault. Maybe its a doctor thing, maybe this is why they don’t want on these sites. So my wife agrees, keep the smart ass know it all doctors with their arrogance and their fancy education off the sites with patients needing support not lectures. Damn her…. why is she always right?

The other pertains  to me telling this story to doctors about my being kicked off of these sites because of  mentioning my book and being a doctor offering “expert” commentary. ( I will say that the stuff I commented on was right on and well spoken). The universal response of all and I mean all of the  doctors to a person was one of disgust. They all had an issue with patients, particularly two types of patients. The know it all patient, the internet patient that would not listen to advice and was more interested in telling the doctor what he had learned than what the doctor had to say. An then the patient that listens to another patient with the same problem and relates the other patients history to the doctor. In other words ,”My friend’s doctor did recommended this.” Or, “My friend did this.” The doctors I spoke to felt that discussion boards represent the very essence of what should not happen in the care of patients. To a person they said sarcastically, “Why in the world would you want a person who is a expert in his field to comment on these boards?” Each had a story about the type of patient that they just could not talk to, wouldn’t listen, and what they were told was then perceived and then related to family members incorrectly. One surgeon who deals a lot with women with breast cancer said,” The first thing I tell my breast cancer patients is that they are not allowed to speak to another breast cancer patient. All they do is confuse the issue. There are numerous scenarios regarding the management of breast cancer so what relevance does cousin Betty’s breast cancer have to do with my patient? But I have to spend fifteen minutes listening to Betty’s story and Betty’s doctor when it has no similarities to the person in front of me. I have to say I am your doctor, I know about “your” breast cancer.” Talking about a sore point that got everyone fired up , this was one.

So, what do we make of this? Discussion board patients need someone to listen and support and stay away from offering medical advice. Doctors should listen more and stay away from support groups and let patients vent with each other. I have been thinking about the perfect site, or scenario. Doctors as a rule don’t want to be on a discussion site, and doctors don’t have the time in daily schedule to adequately listen and be supportive. It’s an imperfect system. The support sites evolved for a reason. It filled a void not filled by the doctor and that it became into being is a good thing. Both sides can learn from this, I have.

I may stick to my one and only other  discussion board site….a georgia trout fishing group.

Rainbow trout, flyrod, self-tied wolly bugger, Soque river just outside Clarksville, Ga.