My Doctor's Visit

I was really scared on October 7, 2004, the day I went for a second opinion from a second neurooncologist. I awoke at 4 AM and stayed awake for three hours. Did you know that Coach is on at 5 AM? I think I found West Wing on at 6 AM as well. I was sure surgery would be the recommendation and I was both okay with that and terrified. A finally fell back to sleep for 2.5 hours.

At midday, my friend and I started out for the Medical Center, carrying MRI scans and medical notes. I was first seen by a resident who took a thorough history and did a neurologic exam. I passed, as usual. Then he left for a while.

The doctor and the resident returned and the doctor shared that the two of them had been conferring on my case. He said given my goals of retaining my cognitive and interpersonal abilities (see more below), his opinion that it may not be a tumor, the fact that I'm having no symptoms, and the risks that surgery would impair my cognitive and interpersonal abilities their joint recommendation is to have no surgery. HAVE NO SURGERY. Get periodic MRIs, perhaps every six months (I am on a four-month schedule) to keep an eye on it. That is prudent. And that is all.

The tumor (or lesion) was an accidental finding. She said I would have been better off not knowing about it. She also suggested that I had enough information now to make a decision.

And I did. I decided not to have surgery. It really helped to have clear goals to share what the doctor. It really helped to have clear information about the potential for brain damage from brain surgery but I obtained by going to a brain tumor conference. All the other doctors by talk to about this gloss over the problems. I wanted and needed to truth. And I trusted this doctor. I did not feel pressed in any way. I appreciated his approach -- starting from first, do no harm. I trusted that all factors were considered and if surgery was best for me it would have been recommended. The doctor was willing to pull everything together and present me with a recommendation that I could understand. And then he offered me time to ask questions.

At the other institution I worked with both the neurooncologist and a neurosurgeon. The neurooncologist would not talk about side effects from surgery -- he wanted me to see the surgeon. The surgeon is almost impossible to talk to and not a man I trust because he pushed surgery and acted as if they would be no big deal -- I'd be recovered in two weeks and mentioned no side effects. This just did not seem believable. And, on my second visit he hardly let me ask my questions. He simply referred me on to the neurooncologist. It was difficult for me to obtainuseful information in this setting, information upon which I could base a decision. In August my case went to the tumor board and they leaned toward surgery -- primarily because I am 50 and things can "go wrong" more quickly when you're over 50. A small leaning, not a recommendation for surgery.

I thought the first place was the best place to go. And I did learn a lot there. It was definitely a place to consult with. And I had obtained other second opinions -- but I felt the same kind of pushing at the second doctor visits. His strong recommendation was: do not have surgery. However, he did not explain why to my satisfaction and recommended MRIs annually. This felt inadequate, I wasn't sure I trusted his judgment. Alot can happen to a brain tumor in the year. And I would rather have changes caught sooner rather than later. I consulted a third doctor who also recommended against surgery -- but he misread the MRI (thinking the tumor was on both the left and right side of my brain) and was not aware that there is a 15-30 percent chance that a tumor that does not take up contrast could be a grade III. Not enough trust there either. I later learned that the fact that it had been six months, and then nine months with no change brought the chance of a grade III down to very very low. And even lower if it's not a tumor at all...

I was still very unsettled about whether or not to have surgery. It was a very good idea to go consult with somebody else. A very good idea. I found a doctor I trusted and who could pull together the information so that I could understand the reasons behind her recommendation.

Deciding not to have surgery in May is the best decision and I have ever made in my life.