Still in treatment... but there is hope!

I received an infusion today. It reminds me that while I am thrilled that the PET scan showed us what we wanted to see, I am still a cancer patient. It is confusing to know that didn't see any active cancer cells, but that I will continue with treatment. The challenge is that there were no changes in my tumor from when we started. Clearly the radiation zapped it (and zapped my nerves while they were at it: trade-offs.)

I have an oligometastisis which is when cancer cells from the primary tumor (aka Bellatrix of 2014 nephrectomy fame) travel through the body and form a small number of new tumors (metastatic tumors) in a new part of the body. This means that physicians are always concerned that there is something lurking. 

Theoretically, I could have been active-cancer-cell-free ever since I had the radiation in 2019; but we will never know because it took so long to get the PET scan. My oncologist, Dr. Stein is also worried that it will be challenging to get another PET scan, so he is hesitates to stop treatment. He does, however, recognize that if things continue to be stable we will have to stop eventually, saying "I can't imagine you staying on Inlyta for the next 30 years."

I had another MRI recently and it, yet again, seemed stable. The radiologists used the term "enhancing lesion" in the write up, and while I am pretty sure Spuyten has been "enhancing" for the least 18 months, Dr. Stein still wants to double check with the radiologists next week that things are indeed totally stable before I stop any treatments. His hesitation is understandable given the history of cancer treatment. "In fact, the question of the optimal timing of [stopping treatment] in patients who derive benefit was initially not anticipated because, before the availability of ICIs, the only reasons for therapy cessation in a substantial majority of patients with unresectable or metastatic cancer were disease progression, unacceptable toxicities or death" (Robert, Marabelle, Herrscher, Caramella, Rouby, Fizazi, and Besse, 2020). Thankfully, I am not in any of those categories. 

In general, Dr. Stein is in favor of stopping treatment. He said "every patient deserves the chance to see if they are cured." Although he is in the minority in using that term as "oncologists are often hesitant to describe a patient as being cured: in a survey conducted in 2013 involving 117 academic oncologists at Dana–Farber Cancer Institute, 81% reported hesitancy in using the word ‘cure’ and 67% reported never doing so. Until now, many oncologists prefer to tell patients that they are ‘in remission’ or have ‘no evidence of disease’ and that they hope it will last as long as possible" (Robert, et al., 2020).

His optimism comes from the wonderful advancements in science and treatments that "cancer patients with certain neoplasms, a diagnosis of metastatic cancer is no longer systematically synonymous with death" (Robert, et al., 2020). I am very hopeful that this is true for me. I am ready to live a long full vibrant life filled with annoying Chris, snuggling nephews, and Tassie attacks. 

Robert, C., Marabelle, A., Herrscher, H., Caramella, C., Rouby, P., Fizazi, K., & Besse, B. (2020). Immunotherapy discontinuation — how, and when? Data from melanoma as a paradigm. Nature Reviews Clinical Oncology, 17(11), 707–715. https://doi.org/10.1038/s41571-020-0399-6