Karen’s Story: Living With Triple Negative Metastatic Breast Cancer

Karen’s Story: Living With Triple Negative Metastatic Breast Cancer

My name is Karen Peterson, and I was diagnosed with Triple Negative Breast Cancer in January 2015. Routine mammograms were a part of my health care routine due to my family’s history of cancer, which included the death of my maternal grandmother from metastatic breast and ovarian cancer in 1973 at the age 45.

Prior to my breast cancer diagnosis I had lived a dual existence.  On one hand, I was happy and blessed, engrossed in family, social events and a fulfilling job as a social worker serving my home community of Harlem, NY.  On the other hand, I was a divorced single mom (once married to a hall-of-fame bound prime time radio disc jockey) who was trying to raise a son diagnosed with Autism.  I had a keen understanding of heartache. Struggle had a continuous rotating invitation at my dinner table, and often hung around for dessert. Overcoming obstacles was an integral part of my DNA, which in turn would prepare me for the toughest fight of my life, staying alive after a TNBC diagnosis.  

After being diagnosed Stage I TNBC (with no lymph node involvement), my original course of treatment was a lumpectomy, four rounds of awful TC Chemo (taxotere & cyclophosphamide) and eventually a voluntary double mastectomy with immediate reconstruction.  I hated everything about my treatment. I hated my port (I fought against having it installed), which became clogged and infected and left me with a pulmonary embolism. I had disdain for the chemotherapy infusion, which left me with a second degree burn along my right arm (which took almost a year to heal).  Then I became a casualty of war when my breast surgeon (who was the chief) bullied me into picking a very talented Park Avenue plastic surgeon (her friend), who performed a fantastic job, but abandoned me halfway through reconstruction (due to the fact that he did not participate with any health insurance plans).  But most of all I hated the feeling of not knowing if I was truly making decisions based on the most up-to-date information. I always knew, deep down in my soul, that I was moving with blinders on, without light, without a full understanding of the monster TNBC is. That cloudy train of thought would change, soon enough and just in time.

You see, if I had to give advice to anyone who was newly diagnosed or dealing with a TNBC diagnosis I would say:

  • Become organized.  Get a binder and put all of your important information in it.  Pathology reports, names of doctors, notes taken during visits, articles. Get your battle plan ready.
  • Become familiar with TNBC.  Very familiar. Before I was diagnosed, I had no clue that TNBC even existed.  My sister had to help me decipher exactly what it is (and even then it was a very basic understanding).   Get familiar with the words: heterogeneous and subsets.

So let me backtrack a little.  After a horrific 2015 (spent under treatments and in hospitals), I freed myself up in 2016 and spent time with chefs, apparel designers, fundraisers, yoga instructors, patient navigators, artist, PHD researchers and other survivors blogging about their relationship with cancer and how they were trying to make a difference in the lives of those who were affected by this ugly disease.  By the end of 2016, I was just completing my reinvention, and had graduated with a certificate in coding, with the intention of getting a technology job. While walking to class on a breezy November evening, I felt a huge pain on the left side of my chest. The pain nearly took my breath away, but I soldiered on and went to class. I thought the pain was due to the tissue expanders I still had camped out under my pectoral muscles. My scheduled completion for reconstruction was not until Jan 2017.  My oncologist was out on maternity leave, so I just brushed off any panic.

After my oncologist returned, she recommended a blood test and pet scan.  The results indicated that my cancer had come back, and I begrudgingly took a biopsy of my spine in March of 2017.  While waiting for my biopsy to confirm that I had metastatic TNBC, I switched gears.

I used to be one of those silly doctor snobs, who had to have the best-touted on the Top 100 list (some magazine puts it together every year).  This time, instead of being led around by the doctors and told what to do, I was going to have a say in how my treatment plan should be built. Instead of searching for doctors, I searched for the latest clinical research on TNBC and then contacted the doctors who were participating in the research.  Instead of hitting chat rooms with women who had questions about clinical trials, I went after articles written about women who had gone through it. I took notes, I vetted information and I started to get a very clear picture on what would take for me to survive. I was building my plan: Genomic Testing + Biopsy Report + Info (peer experience, TNBC expert opinions, articles, white papers) = Treatment Plan.

In April I returned to my oncologist, who could tell that I changed, and somehow become very informed.  After confirming that I had metastatic TNBC, my oncologist recommended standard of care chemo. I announced after carefully listening to her “broad stroke approach,” I was deciding to go a different route.  She tried her best to persuade me that it would be long time and a long shot to get into a clinical trial. I stood my ground and turned my back on what I believed was a dead end. This decision saved my life.  

After doing research on what to expect trying to get into a clinical trial I came across an article that featured a TNBC blogger Chiara (who runs the blog beautythroughthebeast.com) who I had developed a relationship with.  I invited her out to lunch and broke the news that I had been diagnosed metastatic TNBC.  I explained what my plan of action was, what doctors I had been consulting and she immediately broke down the pitfalls and information that was useful when trying to get into a clinical trial.  Words like Phase 1, randomized, placebo, research team and exclusion criteria were thrown around. I came out of the meeting with a renewed respect for Chiara, and a timeframe on which I could base my action plan.  

I understood after poring over all my materials that:

  • I had a lot of tumor infiltrating lymphocytes
  • After getting having my tumor tested at Foundation One Medicine, I had and intermediate TMB (tumor mutational burden). Those with high burdens tend to do better with immunotherapy.
  • My TNBC metastatic tumor had mutations that included: PIK3R1, NOTCH2, and PMS2 among others.  

I had a plan of action that would be specific to my needs.  I wanted a non-randomized, phase 2, double agent immunotherapy trial.  Not too much to ask for, right? Day after day I looked, and finally I contacted a teaching university that had a trial that my particular mutation might match for.  Luckily and crazily, instead of a gate keeper (usually a clinical research nurse) the Principal Investigator (doctor in charge of the trial) answered my email and actually rang my cell phone.  By July 2017, twelve weeks after being diagnosed with metastatic TNBC I was entered into a double agent immunotherapy clinical trial. I am happy to report my tumors are getting smaller and I am one of the four percent of breast cancer patients worldwide that respond to immunotherapy.  The principal investigator calls me a walking miracle, but I feel as if the universe and all those who came before me willed me along, to push back fear and embrace the unknown.

Author

IMG_1046-e1526931010100

Karen Peterson


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