Cancer FOMO

I was introduced to a new cancer friend last week– a friend of a friend of a few different friends of mine. They all pointed her towards me because she, too, has triple negative breast cancer, and she had some more specific questions about treatment of TNBC. She had consults set up with a few different oncologists and a pretty thorough list of questions to ask them. She asked me about my treatment and what she might expect when she talked to doctors.

Of course, I told her what I’ve said thousands of time– I’m not a doctor. But I told her about the treatments that I’d had– dose dense AC followed by T. It was standard of care at the time, and it gave me the best results that one could expect– a pathological complete response (pCR). They knew where the cancer was before I was treated, and when I had surgery, the pathologist couldn’t find any cancer cells left. They were all dead. There is still debate whether pCR is a good surrogate for overall survival (OS)– whether having a pCR means anything about whether the cancer will come back and how long you will live– but it’s still taken as a good sign.

As I wrote to my new friend, I told her she might ask about the addition of a platinum to her chemo regimen. Since I’ve finished chemo, studies have been published revealing that more patients have a pCR if they receive a platinum in addition to ddAC-T, so I’d want that if I were her. I have another TNBC friend who didn’t have a pCR, so she is now on capecitabine (Xeloda) as a sort of preventative agent against a potential recurrence, so that might be a consideration for my new friend, too.

Let’s be clear, even without a platinum, I had a pCR, which is what those studies were going after anyway. And with a pCR, there was no reason for me to have any further treatment with potentially undesirable short term side effects and even more concerning, potential long term side effects. Yet I was left sitting there with a terrible case of #FOMO. Fear Of Missing Out. In the 3+ years since my diagnosis, there are different treatments. We all want the latest iPhone, the newest features on a car, and to eat at the hot, new restaurant. So of course, I want the best, newest cancer treatment. As awful as more chemo is (infusion or oral), part of me wants more.  The evidence based part of me knows that I’ve done everything that has been demonstrated to be beneficial to me, and 3+ years out, I have a pretty good prognosis. But thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO. Maybe it’s because I worry that one more thing might be all that’s standing between me and the gold standard of all clinical trials: OS. Overall survival is really what I’m after, because regardless what I think about cancer treatments, I know that I have major #lifeFOMO. I don’t want to miss a second.