Should TNBC subsets be discussed with the doctor?
During my research in my quest to build an accurate and informed action plan to stay alive I came across some very interesting charts that indicated TNBC had been broken down into subsets! I had never imagined such a thing, and as looked further, sure enough there are grids floating around that break down the very heterogeneous (different) nature within TNBC . I can remember very clearly discussing subsets with my second opinion (research oncologist, who I sought out just before I received confirmation of metastatic diagnosis) who said “You are the very first patient that I have, ask me about TNBC subsets”.
My question is, if TNBC is so hard to treat, then why aren’t the subsets discussed in the primary treatment care phase? There was no mention from any of the doctors that I encountered in my primary phase that TNBC had subsets that distinctly identify how one subset would respond to treatment vs another TNBC subset. How shocked was I that known of this information had ever been conveyed to me by my primary oncologist. Was I alone? Was this standard practice in the primary stage not to mention this HUGE fact? How many others have also been super uniformed like I was. Could it be that if I had had a primary oncologist who had specialized in TNBC, that I might have received this info in my early stage diagnosis? It makes me wonder who’s responsibility is it to get this information to the patient? The doctor, some online advocacy organization or is it the patients responsibility to know all of this?
From looking at the subgroup grid, one can get a basic understanding that TNBC is different an the “classification” is just an umbrella, and within the classifications are distinct types of TNBC that may respond to different treatments. I had no idea this was even an issue until I received my metastatic diagnosis and starting reading, and educating myself. So the bigger questions are:
Are the subsets important? If so, then how important is it when one is first diagnosed?
How do you find out which one of these subgroups you fall in in?
Should it be mandatory to investigate and reveal to a patient which subset one falls in?
Should the treatment plan of someone diagnosed with TNBC be based off of one of these subgroups from the start?
I have no idea what subgroup I fall under, but I believe the best fit would be: The Histologic examination of Tumor Infiltrating Lymphocytes (TIL’s). The reasoning behind my theory was that when my second opinion examined my cells, she indicated to me that I had a large amount of TIL’s. This information was vital to me because it gave me some scientific information to base my plan of attack. Having a large amount of TIL”s may be a biomarker of how one may due if treated with a drug to fight cancer.
So, the burning question still exists. When will the conversation about subsets, and the huge individual differences in TNBC diagnosis be discussed on a wider basis, so that patients can become more informed and help decide what plan of action they want to take regarding their treatment plan. Just asking.