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October 26, 2013: I went into the Emergency room with severe lower abdominal and back pain. I thought I had a kidney stone, but the standard test would show otherwise. The ER doctor conducted a CT scan and notified me that they were "consulting oncology." After several anxious minutes, the ER doctor came back into the room and told me that I had extensive bone lesions, likely from metastatic cancer, and that I had 6-12 months to live. That night changed my life. Weeks later, it was confirmed that I had Stage 4 Metastatic Breast Cancer.
When I found out that I had Stage 4 Metastatic Breast Cancer, I told the doctor he must be mistaken. Like many people in our "pink society," I assumed that early detection WAS the cure; and that having yearly mammograms and doing monthly self-exams was the key to screening for cancer. I had been getting mammograms for 10+ years, each and every year. A month prior to my diagnosis I had a breast biopsy and was told I did not have breast cancer. Unfortunately, my oncologist now believes my cancer was missed for over 2 years, and at diagnosis I had over 200 metastatic lesions. The pain has been horrible, but I refuse to sit at home and die.
I was put on tamoxifen and it failed. Three treatment plans later, my cancer finally started to respond. I have been through 7 rounds of multiple radiation treatments, have had my ovaries removed, have tried numerous pain management protocols, and have had progression 4 times. I currently get my hips and neck shot up with high dose steroids to continue to be able to walk. It has not been easy due to the severe pain caused by the bone metastases, but I have never thought about giving up!
When I was diagnosed, it seemed like there was no one of whom I could ask questions, and no one to guide my way. Motivated by this experience, I started advocating by writing for newspapers and counseling newly diagnosed metastatic breast cancer patients. Then I applied to be part of the "Hear My Voice" advocacy program with Living Beyond Breast Cancer. This amazing program opened many doors for my advocacy. I speak at conferences for them, assist in training new advocates, represent them at breast cancer conferences, volunteer on a breast cancer helpline, and continue to counsel newly diagnosed patients.
It was through Living Beyond Breast Cancer that I found out about CDMRP and the Department of Defense (DoD) Breast Cancer Research Program (BCRP). I have attended and served on the panels as a consumer reviewer twice, and am hoping to be able to go back and serve again!
I truly did not know what to expect the first time I served as a BCRP consumer reviewer. I was nervous, intimidated, and hopeful at the same time. Attending those peer review meetings was life changing for me. I had the opportunity to truly have a VOICE in what research was important, and took the time to really talk to the doctors and scientists about where research is, and where it is headed. As a stage 4 patient, those same professionals truly wanted to hear from me about what it's like to have metastatic cancer. It changed my life. It made me realize that we as patients can have a say in where the research is headed, and that we are respected for our thoughts. It also made me realize we still have so, so far to go. Each time I leave those meetings, I am more energized to hang on, to keep fighting, and to continue to advocate and make a difference for our generation and future generations!
Although no statistics are currently collected, it is estimated that 155,000 people are living with a metastatic breast cancer diagnosis in the United States, hoping for more research and treatment options to extend our lives. Nearly 40,000 of us die every year of this disease, and 25-30% of women who were initially diagnosed with stage 1, stage 2, or stage 3 breast cancers will have a recurrence and a stage 4 metastatic diagnosis. As metastatic patients, we are frustrated that not enough breast cancer research is focused on metastasis, despite the fact that metastases are what actually kill breast cancer patients.
During Breast Cancer Awareness Month and throughout the year, the message of the pink ribbon organizations is one of positivity: fighting and winning; the message is about being a "survivor." I will never be a survivor. Stage 4 metastatic breast cancer is not yet curable. We can be treated with the goal of controlling our metastatic lesions and maintaining our quality of life for as long as possible; but the reality is, I am terminal. And I am not alone.
I will continue to fight and advocate for the DoD BCRP to be funded, as I believe in the research that is being supported. I believe the BCRP can make a significant impact on finding a cure for breast cancer. I am counting on that.
Photos and text used with permission of Kahron Palet
Last updated Monday, January 3, 2022