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//Thinking Beyond Ribbons

THINKING BEYOND RIBBONS: HOW THIS TEAL GAL SURVIVES PINKTOBER

When I returned to work in late 2004 after first-line treatment for ovarian cancer, a coworker said to me, “Welcome back! You’re wearing the wrong ribbon—it should be pink.” I remember thinking, “How presumptuous! Like women don’t get other cancers.”

In retrospect, it was the first time I really became aware of the magnitude of the yearly pink tidal wave. I knew about pink ribbons and breast cancer awareness before I was diagnosed—heck, I even participated in a few run/walks. Apart from that, I never really thought much about cancer, mammograms or “the cure”. Then I was diagnosed with ovarian cancer and it hit me—this was a woman’s cancer, but it was not pink, and I felt indignant.

I attended support group at SHARE, an organization providing breast and ovarian cancer peer support. There I learned that about a quarter of a million people every year will be diagnosed with invasive breast cancer. I also learned about the amazing work of the early advocates to secure important medical coverage and increase awareness, early detection and research funding. Even more amazing to me is that this work started at a time when people didn’t say the word “breast” in public.

Although I do appreciate the immense effort to highlight breast cancer awareness, the lack of similar awareness about ovarian cancer can be frustrating. October sometimes felt like torture. It used to be a month I associated with beautiful fall colors and brisk mornings. But now, it was the month where pink is everywhere—on store shelves, TV commercials, even on baseball and football fields. I became hyperaware of how present it was in my everyday life—even the yogurt I bought had a pink ribbon on it, sometimes as early as mid-September. My act of quiet resistance was to buy a teal shirt with many different ribbons symbolizing cancer that says “They all matter. Find the Cure!” I call it my Pinktober Survival Shirt. I haven’t worn it out in public yet, but just having it makes me feel better.

Then in 2010 I was diagnosed with stage I breast cancer. While looking for more information about my own treatment options I found out that breast cancer, like ovarian cancer, is not one entity. I learned more about breast cancer, specifically metastatic breast cancer (MBC), inflammatory breast cancer (IBC), a rare, aggressive type of breast cancer, which has already metastasized to the skin at diagnosis for most patients, and triple negative breast cancer (TNBC) which has a high rate of recurrence at all stages and shares molecular characteristics with high grade serous ovarian cancer. Women (and men) living with MBC, IBC and TNBC have so much in common with women living with ovarian cancer. Some important things I’ve learned:

  • Women don’t die of breast cancer in the breast. They die of metastatic breast cancer.
  • Mortality for breast cancer has remained unchanged for over 20 years. 40,000 people, including about 400 men, die of breast cancer every year.
    About 8% of people diagnosed with a new breast cancer cases are metastatic at diagnosis. However, even those diagnosed with early stage breast cancer can develop metastatic disease. The fear of a metastatic recurrence is real.
  • From 2006-2013, only 7% of breast cancer research funds were devoted to MBC (according to a study by The Metastatic Breast Cancer Alliance).

Even though awareness is very important, our MBC sisters know that a color and a ribbon by itself will not save lives—research saves lives. After tremendous effort over many, many years, breast cancer advocates who have not felt a place in the pink-ness of awareness campaigns have successfully advocated for an increase in research funds for MBC. MBC advocates were involved in development of the MBC Project and even have real-time access to the data.

While breast cancer research has already contributed a great deal in advancing ovarian cancer research, additional study in the areas of metastasis and the mechanisms of resistance and recurrence will help even more. In this age of advanced technology and precision medicine, the characteristics of different cancers are becoming more important than the organ where it starts. Cancer research in all organ types can be applied to other cancers and has the potential to benefit everyone.

So, does all the pink in October still “push my buttons”? You bet it does! But I get to choose where to direct my energy. Instead of getting sucked into ribbon wars during October, I can focus on increasing awareness about the connection between breast and ovarian cancer, encouraging genetic testing for hereditary cancers and sharing information about metastatic breast cancer. And when I find myself getting even remotely irritated about all that pink-ness, I take a deep breath, put on my Pinktober Survival Shirt and remember that we are all in this together.

Information to share during October:

  • Did you know that women who have had breast cancer are at increased risk for developing ovarian cancer? Learn more here!
  • Are you at risk? A personal or family history of breast cancer may increase your risk for ovarian cancer. Learn more here!
  • Hereditary Breast and Ovarian Cancer (HBOC) Week September 30-October 6 and Previvor Day October 3.  Learn more here!
  • Knowledge is Power! The Stand Up To Cancer Ovarian Cancer Dream Team includes the Magenta Trial to make genetic testing available at home.
 Learn more here!
  • Metastatic Breast Cancer Awareness day is October 13.  Learn more here!

For further reading about Pinktober, here are some articles and blogposts from members of the breast cancer community:

Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.smartpatients.com/globe-athon.

 

2018-09-25T18:13:18+00:00

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