Knowledge is Power

Once again, I am a reporter researching a subject, mining the internet, calling in favors, talking to experts. Only this time, the subject is me and the outcome won’t be a story on the 6 PM news. It’s the decision that will direct my trajectory for the next few months, and more soberingly, will affect the rest of my life.

At issue is whether or not I add chemotherapy to the radiation I will begin later this month. My Florida Hospital team called the margins after my surgery R-0, which is clean, although there were some rogue cells that had broken away from the mass. Huntsman Cancer Institute calls the margins R-1, which is microscopic breaching of the margin, or just being too darn close to call it clear. That on top of the fast-growing nature of Thymic Carcinoma has Huntsman recommending chemo.

After a moment and a half of shocked disbelief that cancer (this time cancer treatment) is screwing around with my life AGAIN, I go to work. First, Dr. Shroff and I agree, let’s find a pathologist, the best in the nation, who’s dealt with this rare cancer more than anyone else has for a third decision. We sent my slides and my pathology to him (Dr. Saul Suster, at the College of Medicine in Wisconsin) and are waiting to hear what he has to say.  Dr. Shroff had said that getting 4, 5, 6 additional opinions isn’t necessarily the way we want to go, but I have the power of Livestrong to tap in to, and so I did. One email to Livestrong CEO Doug Ulman and Livestrong oncologist Brandon Hayes-Lattin, and my pathology was on its way to two oncologists who have a good bit of experience with thymic cancers. Which I have learned is hard to find. My type of thymic cancer is exceedingly rare. How rare? We can’t find evidence of more than a few hundred cases, and of those, most are stage III or IV. Therefore there are no clinical trials, no true established standard of care for me, with stage II… From what I’ve read, even the cancer staging standard may or may not be totally accurate. When I go “rare,” it’s bleeding on the plate.

I’ve already heard from Dr. Giuseppe Giaccone, from Georgetown U. His opinion is that radiation is enough. He says the evidence that chemo would help is weak, and not only that, he says chemo isn’t that effective against this type of cancer. The first part of that finding has come up more than once. I called the number I have for my original oncologist, Dr. Dave (Smith) and was happy to find out that he hasn’t changed it, even though he’s been retired for a few years. He sent me a medical review journal on thymic cancers written by more than 60 oncologists, for oncologists. According  to the review, if I’m reading it correctly and not with bias, thymic carcinoma with R-0 or R-1 margins calls for radiation only. Chemo is not mentioned as being helpful. Also encouraging is that both of the Livestrong docs whose opinions we have solicited both helped write this study.

Tomorrow, I meet with a Huntsman oncologist. Of course I’ve Googled him, too. He’s a chemotherapy expert. I am bringing the study, notes, questions, and, hopefully a somewhat open mind to the meeting. But at this point, I will be hard to convince that chemotherapy, with its short- and long-term bad effects, is a good tool, when I can’t find any evidence that it would markedly improve the chances that this cancer won’t come back. I hope to hear from Dr. Suster and the second opinion from my Livestrong connections tomorrow as well.

When I first got the Huntsman opinion that I should get chemo AND radiation, it was like getting punched in the face. But my friend, Julie, who just finished radiation for breast cancer, had a lovely and powerful interpretation of that. She said the disagreement over treatment gave me the opportunity to ask questions, learn more about the disease and treatment and really participate in decisions that will determine the rest of my life. Cue the music for the “A ha!” moment.That’s exactly what I have been able to do. Now, I can ask intelligent questions and will, with my big brain doctors, be able to make a decision on how best to attack the beast. No matter what I decide to do, I will go against the recommendation of one set of docs from an outstanding cancer hospital. But I’ll do it with all the best information and opinion that I can amass, so I’ll be as confident in my decision as possible. I feel pretty good deciding how to treat this rare cancer that hardly any oncologists ever see. (Read that with the appropriate sarcasm, please.) Knowledge really is power. But consensus would have been so much less stressful. Onward.