Confessions of a Triple Negative Snob

It’s time for me to admit what a snob I was. The only defense that I have is that I was just responding to people’s reaction when I told them I was triple negative, metastasized to my lungs. When I told the nurses while I was in the chemo chair I could almost whisper “Wait for it..and cue the grimace.” Then they would always look away quickly. Then I would say “I know, right? Yikes!” like it wasn’t me we were talking about.

What are these different types of breast cancer?

The Triple Negative Breast Cancer Foundation explains it as “These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.

Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor (and yes, I found the tumors very offensive)  is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple negative breast cancer.”  Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.” Triple Negative accounts for roughly 15-20% of breast cancers, making us less common and harder to find each other in the sea of pink.

I still remember sitting in the coffee shop with Christine, who had estrogen positive breast cancer with mets to her bones. We were catching  up and her comments on the two women she lost  from her support group was, “Well, one was triple negative and they had mets to soft tissue, so..you know…”  “Yes, I do know! That poor woman! That’s terrible..oh wait..that’s the same as me.” But it has now been two years since Christine has been gone. Ellen had said to me, “Here I am going on about my breast cancer, and it’s not as serious as yours”! An “on paper” diagnosis is different from real life.  We lost her almost 6 months ago. I miss them terribly.

I also knew what I saw. Stephanie, Janelle and Audrey each lived with  triple negative metastatic breast cancer for less than one year. It had moved so fast.

So what is metastatic?  Metastatic breast cancer is also known as Stage 4 breast cancer. The cancer has spread to other parts of the body. I didn’t have lung cancer, I had breast cancer metastasized to my lungs. So any kind of “receptor” combinations isn’t good, there is no such thing as the “good kind”, or a “little bit” of metastases.

A bizarre sense of curiosity did lead me to look into it to see how much of a Triple Negative Miracle I really am, and according to the National Cancer Institute’s SEER statistics,  the specific statistics for prognosis or 5-year survival rates are not broken down between the different types of breast cancer, only  broken down either by stage, race/ethnicity, BRCA status, etc.  The 5-year survival rate for stage IV breast cancer across all subtypes is about 25%.  The statistics provided also do not include prognosis (meaning they do not say how many months or years a person might live) because so many factors come into play when trying to determine a person’s prognosis, not just the subtype.  Some of these factors include comorbid medical conditions, age, response to treatments, adherence to treatment, whether or not there is a BRCA mutation, if it is ductal or lobular, and the list goes on. 

110 men and women die from metastatic breast cancer worldwide every day, regardless of the subtype. That leaves a lot of us friends and family left saying “what the heck? Somebody should do something!”

Yes, I should. We should.

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