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By Linda Hansen
According to poet T. S. Eliot, “April is the cruelest month.” I disagree. From my vantage point, the cruelest month is October, or “Pinktober” to the breast cancer community. That’s when the country turns its focus to breast cancer awareness, and pink ribbons sprout like weeds. There were many years when I “Raced for the Cure” and sported tee-shirts emblazoned with pink ribbons, but that was before I was diagnosed with metastatic breast cancer.
Receiving an MBC diagnosis is different from receiving any other breast cancer diagnosis. With a diagnosis of stage 0 to 3, the goal is a cure. After all, for two-thirds of people diagnosed with early-stage breast cancer, a cure is just what they get. They can celebrate their cure each October with pink ribbons and tee shirts. They smile in awareness campaigns, proclaiming that early screening ‘saved’ them. Things aren’t so rosy for those of us with MBC. There’s nothing pink and celebratory about it.
The doctors were clear with me from the beginning of my MBC journey: I wasn’t going to make it out alive. No one spoke of a cure. The most positive goal mentioned was for me to stay alive long enough for another drug to come along which could keep me alive until another one was found. If all went well, I could live for a couple of years.
My way to handle the MBC diagnosis has always been to focus on living each day as a gift. I tried not to focus on my prognosis and was able to keep the thoughts of breast cancer from dominating my mind. I know that every moment that I spend worrying about MBC is a moment I lose to the disease, and I refuse to do so. That works for me eleven months out of the year. Every month except October. In October, I am suddenly confronted with pink ribbons appearing on unexpected items, pink water in public fountains, and pink donation jars at every check-out. When Pinktober stares out from around every corner, It’s difficult to think about anything but my impending doom from MBC.
Also on my mind every October is the fact that only a small percentage of money spent on breast cancer research goes toward finding a cure for MBC. I can’t help but wonder why. After all, if we can cure MBC, early stages become easy. Anything that can kill MBC ought to be able to kill early-stage breast cancer, too. I simply can’t celebrate Breast Cancer Awareness month knowing that only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.
The unfortunate fact that Pinktober has become a thirty-one day celebration means that there is no way to avoid thinking about breast cancer for an entire month. For someone with MBC, Pinktober is nothing to celebrate. In the U.S. alone, a person with MBC dies every 13 minutes. I’ve come to know many people with MBC, and I mourn as people I’ve come to know lose their lives. Now, pink ribbons can only remind me of the friends I’ve lost. They never got to ring a bell to celebrate the end of treatment, never got to celebrate being cancer-free. And neither will I, because Pinktober and pink ribbons won’t cure my MBC.
I know that for people with early-stage breast cancer the celebrations of October can feel empowering. I understand that need for hope, and the joy of feeling “cured” at the 5-year mark. Perhaps the pink ribbons and balloons are happy symbols for those who have completed treatment. No pink ribbon will joyfully tie up my MBC, but it will remind me that my treatment will continue for life. However long that will be.
According to the National Cancer Institute, the number of people with MBC is growing, and is expected to continue to grow. Despite increasing numbers of people with MBC, most breast cancer research money goes to fighting early-stage cancer. Less than five cents of every dollar given toward breast cancer research goes to fighting MBC.
The pink ribbons and celebrations during October had make many people with MBC feel alone. We can’t get support from breast cancer support groups when others are speaking of getting cured, since we will never be cured. Additionally, our mere presence at groups made up of early-stage breast cancer patients is frightening for everyone else at the meetings because we represent their worst fears – being diagnosed with, and dying of, incurable MBC. Our experience is much different from those anticipating a cure and going on to live their lives cancer-free.
We know that approximately thirty percent of early-stage breast cancer patients will go on to develop MBC. We know that the celebration of Breast Cancer Awareness Month will provide only temporary hope for those patients that develop metastases. For us, Pinktober gives a perspective of life with cancer that couldn’t be further from their reality. Ours are the stories not told at celebratory October events. Our pictures won’t adorn the signs announcing a race or rally for Pinktober. We never get to ring that bell. The end of treatment for us is death, not a life cancer-free.
As we enter October we can focus on the fact that we are alive, and we have families and friends who love us. We can also talk to a mentor who knows what we’re going through because the mentor has gone through it before. I called ABCD: After Breast Cancer Diagnosis for help when MBC was overwhelming me. They found me a trained mentor who had the same diagnosis and was similar to me in other ways. Talking to her gave me hope at a time I really needed it. If you could use someone to talk to at this challenging time, you can find ABCD’s free mentor matching at abcdbreastcancersupport.org. That way you’ll have someone to help you with the stress of Pinktober.