Second Opinion

I had an appointment with Dr. Monica Fornier on Wednesday at Memorial Sloan Kettering to get a second opinion about the chemo treatment recommended by my medical oncologist at St. Luke's - Roosevelt. I was particularly interested in finding out why some other women I had met through the online discussion boards, who had diagnoses very similar to mine, were undergoing different chemo regimens. For example, some were doing AC/T (like me) but with 12 weekly Taxol cycles, instead of 4 dose dense cycles. And some were doing 6 cyles of TAC, in which the same three drugs are given all together, rather than split between an AC course and a T course. I also wanted to find out if there were any clinical trials available for me, as a high grade, triple negative cancer patient.

The general recommendation for Dr. Fornier was the same: dose dense AC/T, 4 cycles of each. She explained that MSK developed the AC/T chemo course and feel very confident in its efficacy. They believe that 4 dose dense T cycles is more effective and more convenient, than 12 weekly cycles. In addition, T side effects don't really multiple at the higher dosage, so patients don't experience as much discomfort as they do during the AC cycles. In regards to TAC, apparently this is a curious geographical preference. TAC is more commonly used on the west coast; AC/T on the east coast. At MSK, they think that TAC is more brutally toxic to patients than AC/T and doesn't have any better results. So they don't use it. Huh. I haven't done any additional research on this subject, so I'm not entirely sure who wins the CA vs. NY chemo title fight, but I guess this is the way it is. Okay.

However, there was one other possibility for me. MSK is leading a clinical trial on the drug Avastin, to test its effectiveness in treating patients with early stage breast cancer who have additional risk factors like positive nodes or negative hormone receptors. Avastin, used in combination with Taxol, has been successful in treating women with advanced bc (that is, bc that has spread to other parts of the body) by decreasing the size of their tumors and increasing the amount of time before their cancers worsened. This study will ultimately help determine if Avastin might provide some of the same benefits to women with early stage bc who currently have no other targeted therapies available to them.

I have decided not to participate in the clinical trial for a few different reasons. First, it is an small, early phase trial, so the primary focus is on the safety of the drug when given with an AC/T chemo course. The research is especially centered on the potential for Avastin to cause heart damage when given in conjunction with Adriamycin, which is already known to have a possible risk of heart damage. The "likely" side effects of Avastin include high blood pressure and nosebleeds; "less likely" effects include mini stroke, chest pain, and blood clots that can result in stroke and heart attack. The blood clotting and bleeding factors are particular concerns for me because my platelet counts have been high, meaning I might be at greater risk for both clotting and bleeding already. (In fact, they might not even want me because of those high counts.) And as my sister-in-law said, I'm not sure I want to donate my heart to science while I'm still using it!

Avastin works by blocking the growth of blood vessels, shutting the blood supply to cancer tumors. If I have stray cancer cells in my body right now, it really could be a potential benefit to me. However, it's not as if I don't have any other options. Avastin is not my best or last chance for a cure. I already have pretty good odds of no recurrence just by taking the proven AC/T course - 86% in ten years. Even if I ignored the risks of possible side effects, there is no guarantee that Avastin will help me. That's the purpose, of course, of a clinical trial. The drug could give me a better cancer outcome, do nothing, or even result in a worse outcome than if I hadn't taken it. Until the trials are complete (years from now), there is simply no way to know, or even predict, or estimate, or anything. It's all up in the air.

The are a few other more superficial factors (I mean, not related directly to the potential outcome) that influenced my decision. In order to participate in the trial, I would need to transfer all my scans, treatments, and follow up care to MSK. I'm already on the scan path at SLR, and I'm pretty happy with the level of care I've received there so far; I'd be sad to leave the smaller, more personal center. MSK is THE leading cancer research center in the country, but they are also very big, and the service just isn't as personal. I've spoken to many people - medical professionals, current and former patients, and others - who compare MSK to a factory: get 'em in, get 'em out. While I found everyone during my appointment very friendly, I definitely noticed a difference in style. For example, we had to go to billing and registration first, then to a waiting area on another floor before filling out paperwork and seeing a nurse, then a resident, and finally the doctor in the examination room, then move to another office for the consultation (attended by yet another resident). At SLR, I was able to drop in and talk with Dr. Cohen for five minutes without an appointment; I think that would be difficult at MSK.

The trial is very long. After 4 months of chemo + Avastin, I would continue with Avastin, one infusion every three weeks for 8 more months, for a total of 12 months of infusions. Radiation would follow that. That's a long time! And MSK doesn't believe in using medi-ports. They said ports cause infection, leave a scar, and that they don't need them anyway because "our nurses are good." That sounded conceited and snobbish and really turned me off. Besides, 12 months of infusions without a port? That could do some real damage to anyone's veins!

I talked with Dr. Cohen about the trial. He said that as much as he believes in clinical trials and urges his patients to consider them, he doesn't feel very strongly in either direction about my participation in this particular trial. It is all about my own comfort level and whether I want to try an unproven therapy in the hopes that it might offer me some benefit. Twenty years from now, we might be saying that maybe it would have been a good idea to try the Avastin. Of course, he continued, if we were talking about my cancer in the past tense in twenty years, he'd be happy with that, too! However, he did say that if he were making this decision for his own wife, he would be hesitant to enroll in the trial. That was pretty much the final piece of information I needed - a gut reaction from a doctor I trust. So we decided no, and I'll be starting the AC/T course at SLR next Thursday. I hope I never have cause to second guess the decision.