Cancer log 61: I got a…

Cancer log 61: I got a call late Friday saying that I'd been accepted into the clinical trial. This is a classic bad news / good news situation -- the last eligibility element we'd been waiting on was something called a mammaprint, which is a type of genetic test; a high mammaprint result meant that I was at increased risk for cancer recurrence, and the trial used that as a criterion for inclusion.

I'm not sure why they don't mammaprint everyone with cancer -- I'm guessing it's an expensive test and if they're treating you anyway, the insurance companies don't think it's that useful to know that you're at increased risk for recurrence. But I think it's helpful to know -- that seems like the kind of knowledge that might help a woman decide between lumpectomy or bilateral mastectomy, for example. It's tricky -- I don't want to argue that doctors should do every test possible, because obviously, there's a tradeoff between expense and utility. Not to mention the additional pain / stress of going through extra procedures (as a doctor friend of mine mentioned recently, some doctors will put patients through tests / procedures / treatments for what are likely to be wildly diminishing returns, and that's certainly something to consider -- if you find a lump in your breast at age 80, are you actually going to even want a mammogram / biopsy, much less chemo / surgery?). Scientists are always doing new research and coming up with new tests, so there's probably a point at which we just have to say enough already. But it does seem likely that the richer you are, the more likely you'll get ALL the tests done, and have ALL the relevant information to assist you in making your medical decisions.

Sorry, long digression. Anyway, the main point that may have been lost in all my meandering above is that I'm at a higher risk of cancer recurrence, which sucks, but it does qualify me for the clinical trial, which is good, because it means I get the standard chemo drugs + the novel agent, the new drug they're testing.

Several people have asked me if there's a chance of my being put in the control group and getting a placebo, and I want to reassure everyone that the answer is no, and no. Firstly, because post-Tuskegee, America's medical guidelines mean that in a clinical trial, I still have to get at least the best standard of care available; the doctors / hospital are ethically not allowed to give me less medicine than what the non-trial patient is getting. They can make mistakes, of course, but to the best of their knowledge, they have to give me my best chance for treatment / recovery. Secondly, because while there is a control group in this trial, one that only gets the standard chemo treatment with no novel agent added, they've actually finished that phase of the testing, so everyone enrolled in that trial at this point will get one of the novel agents added to their standard regimen.

If I'm understanding all this right, there's basically no serious downside to enrolling in a (strong, well-conducted) clinical trial these days -- the only negatives are a possible delay in starting treatment (mine was about two weeks), some possible additional side effects (mine should be minor, if any), and the additional time / effort of going through extra monitoring procedures (biopsies, MRIs, extra bloodwork) -- a pain, but that downside is offset, in my opinion, by getting to know much earlier if the treatment is working. Almost all the doctor friends / relatives I talked to said that if it were them, they would go for the clinical trial option themselves.

I don't yet know which novel agent I'm getting. I'm pretty sure the trial isn't blinded to me in that regard, that what happens on Monday is they tell me which group the computer has randomized me into -- although randomized isn't quite the right word, I think, because it's more that the computer looks at all the data it has on me: size of tumor, grade of cell differentiation, estrogen / progesterone / HER2 / Mammaprint genetic markers, and then takes all that info and estimates which of the novel agents is most likely to be effective against my particular case. So it's less randomizing and more individuating my treatment, if that makes sense. If there are three drugs that seem equally likely to work, then I suppose it randomizing that element. But I think regardless, they're going to tell me which drug is being added to my regimen. (Or possibly substituted -- for example, I'm supposed to get Herceptin as part of the standard treatment, but the novel agent might be a hopefully better version of Herceptin, in which case it'll just be substituted in.)

All of this is slightly complicated by Easter weekend, holidays, the computer being down on Friday afternoon, my doctor's schedule, etc. But if all goes well, I should learn what drug I'm getting on Monday, and should start chemo on Tuesday. I'm supposed to be performing in the city Tuesday night, and I asked the clinical trials nurse whether I needed to cancel, and she said no, that people usually feel fine on the day of treatment, that they start to feel the effects a few days later. So tentatively, I'm planning to do my reading Tuesday night (and maybe even meet Lori for a late lunch or early Ethiopian dinner + writing beforehand).

So relieved to finally be starting chemo; the waiting has been maddening. And though I'm not looking forward to more biopsies / MRIs, I'm glad for them too. Onwards.

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