Understanding Triple-Negative Metastatic Breast Cancer and Coping Through Advocacy

Ishiuan Hargrove, on triple-negative metastatic breast cancer. Join our Beyond the Breast Social Media Takeover.

Today is Living Beyond Breast Cancer’s social media campaign #beyondthebreast; as someone who has been living with breast cancer for 9 years, I would like to share some of my insights on how I live with my triple-negative metastatic breast cancer. So there are two major components of this blog: a triple-negative breast cancer (TNBC) portion and a metastatic (MBC) portion.

11987183_10153571237599076_8631362120986273324_nWhen a pathology report shows someone with a triple-negative breast cancer (TNBC), that’s any breast cancer that does not express the genes for estrogen-receptor (ER), progesterone-receptor (PR) or human epidermal growth factor receptor 2 (HER2/neu). TNBC accounts for approximately 10 to 20 percent of all breast cancer cases and because the absence of ER, PR and HER2 receptors for targeted therapy, treatment options for TNBC patients are unfortunately very limited. TNBC is the subtype with the highest levels of recurrence and lowest survival rates compared to all other breast cancer subtypes.

Here are some facts: According to the American Cancer Society’s Cancer Facts & Figures 2015, about 231,840 new cases of invasive breast cancer are expected to be diagnosed among women in the United States. About 40,290 women will die from the disease this year. A group of these women who have been treated for breast cancer are living under the shadow of possibility of cancer recurrence and metastasis. Metastasis is when the breast cancer cells no longer stay inside the breast and spreads to the rest of the body. The typical sites where the breast cancer may spread include bones, liver, lungs and brain. One major fact included in Metastatic Breast Cancer Network’s (MBCN) “13 Facts Everyone Should Know About Metastatic Breast Cancer is, “No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.”

So not only I was inducted to the BC club, I was diagnosed with TNBC, which still has no targeted therapy. A few years after my initial diagnosis, my cancer spread to my lung and my brain. I have two boys and I was initially diagnosed when I was nursing my second son. He is now nine years old and it took me awhile to explain to both of them that I DO NOT have lung cancer and I DO NOT have brain cancer. These sites of metastases are both part of my breast cancer. After explaining my diagnosis to my children, I realized I have to do a similar kind of explanation to adults as well.

The statistics look pretty bleak in my situation. Funny thing is, I am a board certified medical physicist specialized in radiation oncology. I spent 15 years of my life treating patients with cancer by radiation, including myself! Sometimes I wonder about my purpose in life. Now I thought perhaps I could show others that metastatic cancer is not an automatic death sentence. Yes, most of us ultimately die from this disease, but some could live for many years and perhaps even preserve a quality of life.

As much as the statistics offered from national cancer registries, there are no definitive prognostic statistics for MBC. We should all look at ourselves as unique cases. Through out my years of fighting cancer, I found myself gradually moving away from the most aggressive treatment options aiming for a cure, and drawn toward the palliative treatment that focuses on control of the disease and preserving quality of life. If a drug is making me feel worse than the disease itself, I might voluntary quit. If I can preserve my own immune system to a degree, I can co-exist with my cancer cells and “wait it out” until the next new drug becomes available.

I now volunteer through LBBC’s Hearing My Voice Outreach Volunteer Program, doing patient advocacy and trying to share my experience with others who are walking on the same path. Living with a terminal illness can be a lonely road and sometimes even the closest person to you does not offer comfort. I keep friends who lift me up and cut loose the ones who bring me down. I stopped rushing. I started to say “no” sometimes. I’m concerned with being interested than being interesting. And finally, I ride my bicycle as much as I physically can.

Cancer has taken a lot of things away from me already. I refuse to let it to take more. Sometimes waiting for the doctors and new drugs is not as useful as taking the action into my own hand. One way I do this is by trying to attend as many educational conferences about metastatic cancer is a great way to get hope. You get support and updates, and realize there are so many talented and intelligent people out there willing to help us and are trying to find a cure for our diseases. I also act as a patient’s advocate.

We need to gather our resources to help fight this dreadful disease. Our society is taking collateral damage when breast cancer is hurting someone’s wife, mother, sister or daughter. When this October comes, please do not just link the breast cancer with pink. As a matter of fact, please do your own research to decide who and what to support when you give your donation to fight breast cancer.

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