Triple Negative Breast Cancer–How Do You Treat It? How Do You Survive It?

As I discussed in my last blog, triple negative breast cancer—TNBC—is breast cancer that is not fed by estrogen, progesterone, or HER2 protein.  Overall, it represents 10-15% of all breast cancers, but 70% of breast cancers in BRCA1 patients.  Because it is triple negative, hormone-blocking drugs such as Tamoxifen are not an effective treatment. 

How Is TNBC treated?

In general, the treatment for TNBC is a combination of surgery and chemotherapy.  While theoretically a lumpectomy is an option, I imagine in most cases patients opt for a mastectomy.  Mastectomy may or may not be bilateral (both breasts), and may or may not include reconstruction.  That’s an entirely different conversation.

Chemotherapy lowers the risk of the cancer returning, and increases the likelihood that cancer cells that may have spread to other parts of the body will be killed.  TNBC has been found to be very responsive to chemotherapy.

Occasionally radiation is recommended if the tumor is small and localized and/or if treatment includes lumpectomy instead of mastectomy.

Immunotherapy is another treatment option for TNBC.  Immunotherapy targets specific proteins so the immune system can do a better job of identifying and fighting cancer cells.  Keytruda is the most common immunotherapy treatment.  It is approved for use both before and after surgery.

The 5-year survival rate for someone with TNBC depends a lot on how early the cancer is found.  Overall, the 5-year survival rate is 77%, but that is somewhat misleading.  If the cancer is localized and has not spread beyond the breast, the 5-year survival rate is 91%.  For cancer that has spread to the lymph nodes or other nearby areas, the 5-year survival rate drops to 65%.  If the cancer has metastasized, the 5-year survival rate is 11%.  Clearly, it is extremely important to find the cancer early, before it has spread.

To summarize:

• My overall risk of developing ANY breast cancer is 87%.
• My overall risk of developing TNBC, as a BRCA1 carrier, is 61%. 
• The treatment for TNBC is surgery and chemotherapy.
• So, the chance of my developing TNBC requiring surgery and chemotherapy is 61%.
• The overall survival rate of TNBC is 77%, but if it is found early, the 5-year survival rate increases to 91%.

What Are My Options?

• Do nothing.  I’ll almost certainly get cancer, which would be found at a later stage.  I’d require surgery and chemo. My survival chances drop because of the delayed diagnosis.
• Monitor.  Go for MRIs and mammograms every 6 months for at least another 16 years.  If cancer is found, it would likely be found early. I’d require surgery and chemo, but have a good chance of survival.
• Prophylactic bilateral mastectomy.  I’d avoid a cancer diagnosis, and therefore avoid chemo. I’d have the benefit of scheduling surgery when I want it (not because of a cancer diagnosis).  I’d have an excellent chance of survival.

What Advice Am I Getting?

When I first learned of my BRCA status, my gyn told me to take my time making any decisions.  (If you read my early blogs you may recall that my gyn’s wife is BRCA positive.) But later in the same appointment he said, “So, are you considering DIEP or implants?” (I had no idea what DIEP was at the time.)

When I saw my GP last month and we discussed it, I asked her point blank, “What do you think I should do?”  She hemmed and hawed and did not directly answer the question.  “It’s a very personal decision.”

When I saw my endocrinologist last month, she said, “I have a few friends who have had PBM.  They have no regrets.”

I joined a Facebook group for women with BRCA mutations.  Several weeks ago, someone posed the question, If you had a prophylactic mastectomy, do you regret it?  Not a single person said yes.  Even those who said they required multiple surgeries, had complications, were less than thrilled with their results, etc, did not regret their decision.

Each day the same board is filled with posts written by people who had or have cancer.  Nearly all of them found out about the BRCA status after they were diagnosed.  Each one said that if they knew about their risk, they would have had a prophylactic mastectomy to avoid the cancer diagnosis.