I did not meet Maria, only having spoken with her. However, I do not meet many of my patients. I am a pathologist. When I do, it is a true honor. Connecting the slides to a person, family, loved ones is invaluable, bringing a new level of understanding to my diagnoses.
I have met many patients, even more through my advocacy activities. It is inspirational, giving my work more meaning. It came as a shock to learn that Maria lost her battle November 27, a day after Thanksgiving.
Maria was first diagnosed with breast cancer in February 2012. It was a lesser known, rare type, termed metaplastic breast cancer (MpBC). MpBC is defined as having a malignant second cell population, in addition to the more common epithelial component. It is estrogen, progesterone and HER2 negative (triple negative) and typically pursues an aggressive course.
Maria underwent both chemotherapy and radiation treatments after a lumpectomy in 2012. She was diagnosed with a recurrence in December 2012. After a mastectomy in February 2013 she was treated with chemo in March 2013. She finished treatment in May 2013.
She and two other women impacted by MpBC founded a website to bring attention to this rare form of breast cancer. They united patients, caregivers and researchers in a global community committed to the search for a cure.
I had the honor of authoring a Q&A post on her site after Maria reached out to me, having connected on Twitter. I discussed the diagnosis, important findings, latest research and explained what to look for in the pathology report.
I helped connect her to the College of American Pathologists (CAP), where she lobbied to expand the cancer protocol checklist and revise the notes sections to include more information on MpBC. This would ensure pathologists accurately diagnose and report MpBC, facilitating future research in this rare cancer.
The CAP interviewed Maria in a podcast. In her words she was "attempting to reach pathologists to let them know we need their help in capturing accurate descriptions of our tumors so we can 1. Make better clinical decisions and 2. help researchers cull tumor information that will allow for more/better studies of our tumors."
Yesterday I received a letter from a dear friend of Maria that she had passed away November 27. Stephanie, herself a metaplastic breast cancer survivor, described Maria’s courageous battle:
"Today I am sitting at my computer reviewing old emails from Maria. Maria passed away on November 27th. She was initially diagnosed in 2012. She was never staged, but she believes she was probably a stage II. The complexity and oddity of her initial presentation, so she was told by her surgeon and med onc, prevented accurate staging. She went through lumpectomy, chemo and radiation and was then promptly found to have a local recurrence. This was managed with a mastectomy and more chemo. She did well, although she was never scanned again - a decision she later regretted. In late May she began having what she believed to be allergy related sinus drainage and a developing cough. As the cough worsened, she resisted suggestions to seek care. She had been accepted to a week long Project LEAD seminar in July and nothing was going to stand in her way. Ya gotta love Maria for her stubborness and ability to follow through with all of her commitments. As a MpBC stage 4 thriver myself (lucky enough to be in full remission for 2+ years), I begged her to consult with her onc regarding this worsening cough. Even her husband could not get her to comply and seek treatment. I was of the belief that she knew there was a high risk of lung mets and such a dx would interrupt her plans for Project LEAD. She promised to get checked as soon as she returned home, and she did indeed have an appointment for the Monday immediately following her return home. She and her husband drove to San Diego for the seminar in their RV having a great time camping and doing what they loved best. She began to cough up blood.
At the conference, surrounded by well informed professionals and advocates she was finally convinced that she required immediate care for the constant, annoying cough which made her ribs ache, etc. At an ER in San Diego she was informed she had significant mets to the lungs and a small spot on her hip. She flew home and luckily had that appointment with her onc on the very next day as previously set up. She was accepted into an anti PD-L1 trial, but was unable to get very far with this due to infection and other side effects. She was then started on eribulin. She had rads to the hip area which had, over a period of 3 months rapidly progressed to include all of her T spine and below. Overall, she did poorly with all interventions. The rapidity by which this disease progressed was not only frightening, but shocking to her care team.
About 2 weeks ago she and her husband decided to quit all treatment and commence hospice care in her home. I spoke to her many times during her few months of metastatic care and, among many things, she asked me to contact all of the physicians with whom she had contact on behalf of the online group and the website. I am honored to have been selected by Maria to do this."
Maria confirmed my belief that patients should meet with their pathologist. Learn about this important member of the care team. Ask about the pathology laboratory that will examine your tissue sample. Meet your pathologist. Get a copy of your pathology report and understand it.
I did never meet Maria in person, but collaborated with her frequently. Maria raised awareness about a rare subtype of breast cancer. She empowered others to take control of their health and be engaged. She taught me something as well, just like every patient, making my work more rewarding. There are many more patients out there I have not met. Hopefully one day, they too can meet their pathologists and teach their important lessons.