A recent thread on a cancer listserv included the rants of listserv members who were angry they hadn't been better warned about the possibility of developing aftereffects. This is a problem.
Sure, it's a problem if patients and family members are surprised by aftereffects. But the problem I want to address is their ranting.
For one, they lumped all physicians together, saying such things as “they” do this or that. As I see it, if a patient has a bad experience with a physician, the patient can draw conclusions only about that particular physician (i.e., “he” or “she” did this or that; not “they”). Lumping all physicians together fosters an adversarial stance, one that is not healing for anyone.
For another, they suggested that physicians don’t care what happens to patients after completion of treatment. Nothing could be further from the truth. In my years of service as a patient advocate on national survivorship committees (including ASCO's survivorship committee), I have witnessed firsthand the angst and dedication of clinicians and researchers who are striving to find less toxic and more effective therapies. Just Google “aftereffects” and see how many links you get. Compared with when I entered my first remission in 1991, the volume of research and resources related to aftereffects is astounding. The percentage of clinical oncologists and primary care physicians who are doing their best to address post-treatment issues is growing every year.
What’s a Healthy Survivor to do? I'll answer in my next post.
It is a big psychological adjustment from excellent health to chronically ill and incurable. Things I used to be able to do easily before my recurrence of kidney cancer are no longer possible. In my 15 years as a volunteer counselor I have observed that the people who make the kind of adjustment I hope to acheive are focused on what presents to them today. One man jumps to mind. Tom's colon cancer was misdiagnosed as an apendicitis, and that conclusion was not reviesed even though the appendix was fine. When he was finally diagnosed it was terminally in his liver. He refused to blame anyone. Tom was too busy living.
Posted by: Bill Kleine | January 18, 2012 at 02:36 AM
Thanks for sharing the bittersweet story of Tom, a man who found the courage and fortitude to accept his lot so he could continue to live as fully as possible under the circumstances.
May his memory help those who knew him -- or know of him -- to live as fully as possible when in unfortunate circumstances.
Posted by: Wendy S. Harpham, MD | January 18, 2012 at 06:13 AM
As my doctors have told me....medicine isn't an exact science, that is why it is called the "practice" of medicine. While some patients find this unnerving, I appreciate my doctors honesty, especially after having the first 2 oncologist I saw be less than honest...but some of it was just a lack of knowledge on their parts because my Lymphoma has not behaved "by the book' as they said. That is why as patients we have to advocate for ourselves, change doctors if need be,and move on. Pointing fingers and badmouthing do nothing to help us heal, either physically or emotionally. I have found that this whole experience has probably made me a better patient ( at least I hope so),sometimes it is a personality thing, you just don't mesh with a particular doctor. Not to say that there aren't doctors out there with issues when it comes to relating to patients, but I have found those to be few and far between.
Posted by: Deb Konrad | January 18, 2012 at 08:51 AM
Dear Deb,
Thanks for sharing this and emphasizing my point that patients are hurt when they don't respond to justified and understandable anger in ways that help them. With hope, Wendy
Posted by: Wendy S. Harpham, MD | January 18, 2012 at 09:12 AM