“Residual Cancer Burden”

Some things are gradually returning to normal. My hair is growing back (and eyebrows, and armpits, and…). Still like soft peach fuzz on the top of my head. Kinda cute, silvery. However, a lot is still different, and I’ve been learning the meaning of the phrase “Residual Cancer Burden.” Technically, it is an index compiled from several factors including size of the tumor remaining after chemotherapy, lymph node status, and “cellularity.” Emotionally, it seems an apt phrase to describe this new phase of life. In medical/technical terms, the RCB is predictive of risk of recurrence of cancer and survival rates. Emotionally, of course, how much has changed permanently in my life is still unknown, and how big a “burden” I feel as a result of my treatment so far and my prognosis can change radically from day to day and even hour to hour.

Apparently my RCB is just high enough that I am eligible for a clinical trial my oncologist thinks is worth looking at. In a bizarre random (?) connection moment, we realized that the researchers leading the study are at Indiana University’s Melvin and Bren Simon Cancer Center. Melvin and Bren Simon were friends and business associates of Don’s father who died 2 weeks ago; he was their financial advisor, influencing their philanthropy, and was involved in negotiating the agreement whereby they gave the gift to the cancer center that led to it being named after them!

The study is testing the hypothesis that genomically directed therapy is more effective for triple-negative breast cancer (TNBC) patients at this stage of treatment than the standard of care/physician’s choice (which in my case would presumably be no further treatments). The doctor conducting the Milwaukee branch of the study said it is important because even with no lymph node involvement, recurrence rates within 10 years are 20% across all breast cancers, and higher with TNBC; with other breast cancers they have ongoing drug therapy they can give, but so far nothing that has been shown to work for TNBC.

He is going to review my eligibility and see if the central office of the study wants to re-look at the pathology slides (my oncologist in Madison said the pathology results put my RBC just over the eligibility line). If I am indeed eligible, he will also find out whether I could receive the treatments in Madison if I’m randomly selected for further treatments. If yes to all of these questions and I opt in and am selected for further treatments, the treatment would be 4-5 treatments of one of 12 already existing chemo drugs (no experimental drugs) that they have reason to believe would be more effective for the particular genetics of my tumors. This might be more of a drug I’ve already had, or a new one. (He did say that if the genomic testing suggested more adriamycin they might not give that to me because of the danger to the heart).

I have a tentative appointment to meet with him in Milwaukee next Wednesday (I was already planning a trip there for a project I’m working on). There is some question about whether my HMO will cover that meeting so it could also get postponed even if they decide I’m eligible and I decide I want to be in it. There is also the question my sister-in-law the MD just raised about whether I should get a second opinion, and perhaps try to get the genetic testing done without having to be subject to a random trial….

In addition to this new wrinkle, we also met this morning with a nutritionist, also at my oncologists’ recommendation, to learn about shifting to a lower-fat diet. There is some evidence from a fairly large study (WINS) that breast cancer survivors on very low fat diets did better than those on regular diets, and that people with estrogen-negative cancers (of which TNBC is a subset) did especially better. So, for the first time in my life I am attempting to count calories. I’m using an app called My Fitness Pal. It’s a little bit fun, but not that easy, since a lot of the food I eat is prepared at home rather than packaged, and it’s not so easy to estimate grams of fat in it. For example, in an attempt to assess the breakfast I had eaten, I actually poured 1/3 of a cup of the home-assembled trail mix I eat onto a plate, and counted the numbers of almonds, peanuts, filberts, cashews, walnuts, and pecans in it!!! Of course this was probably overly obsessive, and perhaps I was procrastinating on other more important tasks… but I’m kind of into precision, and if I really commit to this diet I will only do such assiduous record-keeping for a week or two, and it will get easier every day of that time. In addition to being a little fun and interesting, the idea of going on this diet, though I think it will be difficult at first, appeals to me because it feels like I will be doing something proactive to prevent a cancer recurrence. And unlike another round of chemo, it will probably make me feel healthier!

I also went to my acupuncturist today, did my physical therapy, and called a friend of a friend who is having a double mastectomy next week to offer her support and answer questions. Given that I thought I was “done” with treatment, much of today was spent on cancer-related tasks. Seems like a residual cancer burden to me!