Our Visit to MD Anderson

A little over a week ago, David, Emma and I went to MD Anderson Cancer Research Center in Houston for a second opinion regarding my case. I am in remission now and we wanted a second opinion on how to remain in remission. My oncologist here in Austin encouraged us to go.

I could tell we were dealing with something much, much bigger than my clinic here in Austin by simply the amount of paperwork involved. In preparation for our visit, I filed out numerous medical history forms - both online and hardcopy. I had all of my medical records sent to MD Anderson from all of my Austin and Baylor doctors. I collected all of my CT and PET scans and reports on a disk. I interacted with several MDA new patient personnel via phone and email for a week before my visit. I felt like I was applying to grad school all over again. We had high expectations.

These high expectations were shot down after only a few minutes with our doctor. (Folks in the South often soften criticism of others with ‘bless his/her heart,’ so here we go…) Bless his heart, this doctor was one of the most arrogant, patronizing people David and I have ever met. We were asking questions about the potential relapse of a life threatening disease here and we get attitude?

David and I have been in and around academic circles, so we are familiar with attitude that comes with tenure, publishing, grants, fellowships and so on. We can deal with attitude if we get information. This was the most galling and frustrating point. This doctor could not answer any specific questions regarding my case because he would only comment on tests, scans, or treatment done at MD Anderson. Since this was my first visit, all the information we received was very general in nature. It was clear he had not read my file.

Here are some Q & A examples to give you a flavor of our meeting….

Q & A EXAMPLE 1
David: Do you recommend that Gigi participate in a clinical trial to prevent relapse?

Doctor: Of course, I recommend all my patients participate in trials to advance science.

David: Yes, but will it benefit Gigi specifically?

Doctor: I have no idea. That's why it's a c-l-i-n-i-c-a-l t-r-i-a-l (spoken very slowly with every syllable carefully enunciated).


Q & A EXAMPLE 2
Gigi: Am I eligible to participate in this clinical trial given my situation?

Doc: I have no idea. What is your situation?

Gigi: Well, let’s see. I was diagnosed with large cell, intermediate grade, B cell, stage 3-B non-Hodgkins Lymphoma.

Doctor: You must also be considered high risk according to the International Prognostic Index which is based on 5 factors.

Gigi: So, am considered high risk?

Doctor: I have no idea.


Q & A EXAMPLE 3
Doctor: Do you have any other questions?

David: Well, are there any other questions we should be asking?

Doctor: Looks like the high in Houston will be about 80 degrees today. (Doc then stands up and walks out the door.)


I am so glad David was in the room with me. I would have felt very, very bad had I been alone. With David with me, the whole interaction just became comical. As soon as the doc left the room, I put my hands up to my face and shook my head a la Jon Stewart from the Daily Show. Then David and I just laughed. Thank goodness for laughter.

The next day, I called the patient advocate to express my concern. This woman was great. She listened. She sympathized. She apologized. She said this doctor’s style can be abrasive, but that she has seen him go beyond the call of duty for his patients.

There were some good things that came out of this meeting. I am now in the MD Anderson system. So if I do relapse and need to return, I am already set up as a patient. Moreover, perhaps there was a reason this well published, nationally recognized lymphoma specialist seemed annoyed with us taking his time: I am in remission! He sees patients that are in active treatment fighting for their lives. I am not very interesting to him because there is not much he can do for me now. And what a blessing that my case no longer causes doctors to jump into action. Yes, I am in remission. My life is no longer in jeopardy. The doctor was probably like, “This is ridiculous. You are in remission. Step aside, lady. I need to go save some lives now.”

Godspeed, doctor guy. Godspeed.