When Patients Think They Know Best
From Medscape Hematology-Oncology > Cheson on Oncology
When Patients Think They Know Best
Bruce D. Cheson, MD
Authors and Disclosures
Video link - http://www.medscape.com/viewarticle/762796
Hello. This is Bruce Cheson from Georgetown University Hospital and the Lombardi Comprehensive Cancer Center. This is Medscape Hematology.
I shouldn't do one of these when I am upset about something, but I'm going to ventilate a bit. Yesterday was like Goldilocks and the Three Bears in clinic. The irony was striking. The first patient was a young woman -- a lawyer -- whose father is a prominent lawyer and who always comes to clinic with her. She has Hodgkin's lymphoma and had agreed to participate in a Cancer and Leukemia Group B (CALB) Alliance intergroup study. In this study, patients with limited-stage Hodgkin lymphoma get 2 cycles of adriamycin, bleomycin, vinblastine, dacarbazine (ABVD) chemotherapy. If positron emission tomography (PET) is negative, they only get 2 more cycles of therapy. Four cycles has now become the standard in this situation. If they are PET positive, then they get radiation or other treatment.
This patient had her 2 cycles of therapy. She went elsewhere to get another opinion and the other physician agreed with our approach. She returned to get her PET scan and it was negative. Everybody was happy. Yesterday, she came to clinic with her father and her mother for cycle 3, day 15. I walked in the door and she said, "We have decided that I'm going to get 6 cycles of ABVD. We have read the literature and this is our decision."
Needless to say, I was a bit perturbed. Not so much because she would no longer be on the clinical trial -- that is every patient's right to drop off -- but because of the temerity to just tell me what they wanted rather than to discuss with me what they wanted. I produced a recent paper from the New England Journal of Medicine  showing that 4 cycles of ABVD for limited-stage Hodgkin's lymphoma was associated with an almost 90% survival at about 15 years. Their response was, "Well, yeah, but that's a Canadian study." These are supposedly intelligent people. I was very upset by that and I will not be giving her 6 cycles of therapy. If she insists on it, then I am sure she can find someone who will do so. I try not to overtreat patients.
What was ironic was the next patient. This was a somewhat older woman in her early 40s who came for a second opinion because she had the same stage Hodgkin's as the previous patient. She said that she had received 4 cycles of ABVD. Her PET scan was negative and her doctor wanted to give her 2 more cycles, but she thought that was too much therapy and came to me to get my opinion.
We had one patient saying, "Gee, this is too little therapy," and another patient saying, "This is too much therapy." In fact, what they had received was just the right therapy, and in their situation, it was 4 cycles.
The second patient was very happy and the first one wasn't terribly happy. It just shows you that patients can be right. They are not always right, but you need to at least have a discussion with them about the reasons for doing what you are doing. I explained to the first patient about the risks for secondary malignancies, infertility, cardiac dysfunction, and the reasons why over the years (since we are curing so many patients with Hodgkin's lymphoma) we have been trying to reduce the amount of therapy to decrease the long-term adverse effects. Somehow, it just didn't sink in.
We do our best and we try. Most of the time it works, but sometimes it doesn't. I made one patient happy and one probably not quite as happy as she could have been, but she will be cured of her disease.
This is Bruce Cheson. I'm sorry if I am just venting and rambling today, but it was an interesting contrast. Signing off for Medscape Hematology until next time.