Updated: Oct 29, 2021
The Cancer Industry Wants You to Forget About the Impact Metastatic Breast Cancer Has on Women. I Won’t Let That Happen.
In 2011, my mom was diagnosed with Stage II breast cancer. After a double mastectomy, rounds of grueling chemotherapy and radiation sessions, she would be declared cancer-free. Only the cancer would return 10 years later, now putting her at Stage IV, or better known as metastatic breast cancer (MBC).
Let me be clear, this is an incurable disease often with a prognosis of 3 to 5 years left. The breast cancer industry, with its message of hope and pink ribbons, has worked to destroy awareness of this fact, precisely because the moniker of a powerful survivor cannot be applied here. At Stage IV, cancer has spread elsewhere in the body. For women with MBC, this is most commonly into the bones, but it can also spread into the lungs or even the brain. Reaching this point means that no matter the treatment, total elimination of cancer cells is impossible.
According to Breastcancer.org, nearly 30% of women diagnosed with early breast cancer will develop MBC. 72% of those diagnosed will die in up to just 5 years. Yes, early dictation can dramatically reduce the severity of treatment and the likelihood for cancer to return, but it is not guaranteed. There has been a systematic erasure of this very real possibility.
If we do the math on the numbers I mentioned before, it isn’t pretty. 1 in eight women will get breast cancer in her lifetime. 1 in 3 will develop MBC. 3 in 4 of those will likely die in 5 years. This amounts to about 3% of all women facing this disease as her cause of death. Of 166 million women in the United States, that is almost 5 million women confronting this outcome. It is not insignificant.
When I talk about the ‘breast cancer industry,’ I am most likely referring specifically to Susan G Komen. I’ve had grips with this organization for years. Twice in my academic career, once in high school and then in undergrad, I wrote a paper on the evils done by this group. I could go on about Komen’s crippling lawsuits against small businesses for daring to use a pink ribbon or their partnering with fast food giants to promote ‘health awareness.’ These are all awful no doubt, but to me, the most egregious result of Susan G Komen possessing the monopoly on breast cancer awareness is the conditioning of society that breast cancer is the ‘good one’ to get.
Just searching up posts on the breast cancer subreddit, people continue to rightfully complain about the terminology thrown around towards breast cancer patients. The labeling of patients as being brave or fighters twists the narrative into thinking these women have much choice in the matter. In one particularly poignant comment, a user writes, “I get furious when I see "save the boobies" or "save the tatas." We need to save the women.”
My mom recently disclosed her medical status on Facebook. Though I understand peoples’ desires to be supportive, reading “You’re going to beat this! You’re a fighter!” has only reignited my anger with the cancer industry. No, my mom is not going to beat this. She will be on treatment for the rest of her life. Does that make her less of a fighter now because she won’t end up winning the battle? It can be hard not to be angry at her followers. Afte rall, it is the constant conditioning of groups like Susan G Komen that have taken away awareness from women with MBC.
This messaging makes sense considering what Komen’s purpose truly is: an advertising company. They want to both share a message of hope and simultaneously convince consumers that their purchases go directly to saving lives. The awareness they want to spread can just be slapping a pink ribbon on any given kitchen gadget. Of course, the argument for this line of fundraising is that people tend not to give freely without motivation. If someone is in the market for a pizza wheel, they might be willing to buy the marked-up pink one if they believe the extra money is going towards a good cause. But the majority of the money is not “for a cure” after all. Only around 20% of the money raised is being spent on true research. The other 80%? Operating costs, including salaries, and “public education.”
One of the most well-known educational messages is the need for early detection and thus regularly screenings. The logic makes sense at first, if you can catch cancer early, treatment is far more likely to be successful. Yet, these screening processes may not actually reduce relative or absolute mortality in breast cancer patients. An article from Nature.com reviews a cancer researcher’s, Olena Mandrik, analysis on the benefits of mammograms. She has only been able to find a benefit in screenings for women over 50; results are inconsistent for women any younger. The issue of overdiagnosis is also not something that is talked about by the breast cancer industry. False positives and the subsequent psychological damage from going through multiple tests may not outweigh the benefits of getting screened regularly. There isn’t even a medical consensus on how often to screen. And as I mentioned very early on, detecting and treating cancer early only lessens the likelihood of recurrence. There is no 100% guaranteed cure.
Back when I was writing my high school homework assignment on Susan G Komen, I came across a blogger by the name of Lara Huffman. She railed against the organization for not bringing someone with MBC into their advertisements until 2012. Komen existed for decades before this. What is especially heartbreaking about doing more research now is learning that Huffman has become an MBC patient just recently herself. The effects of this disease are too far-reaching for these women not to be known about. Only one day a month, October 13th, is dedicated to awareness about MBC. Huffman writes the words I’m trying to scream into the void, “Those living with and dying of metastatic breast cancer should be at the absolute forefront of the breast cancer discussion. No ifs, ands or buts.”
For all my talk of MBC being a serious disease, and it certainly is, I can't leave this posting without mentioning that treatment continues to improve with modern research. It is not quite as hopeless a diagnosis as it might have been twenty years ago. Life continues to be extended for women with MBC. New drugs like Ibanse and ENHERTU can keep the condition stable for much longer. And because these treatments are often not as harsh as those in an early stage, quality of life will continue to remain positive after diagnosis for some time.
Yet, writing this article has been abjectly terrifying for me. I feel as if I am staring down the barrel of a pink-colored gun. I don’t know how to confront my mom’s limited time left. How do you move forward in life not knowing if one of the people you care about the most won’t get to experience your milestones with you? I want her to be with me whenever I get married, when I choose to have children, when/if I ever get my Ph.D. just like her. And what of myself? My chances of getting breast cancer have doubled with her diagnosis. I’m almost totally paralyzed in fear of having my own life cut short, leaving my future children motherless and a million dreams still unrealized. Work undone for the many feminist issues that still remain today.
I’ll conclude by saying this: metastatic breast cancer is unequivocally a gendered issue. It affects women. Even and most horrifyingly young women who’ve been conditioned to believe breast cancer only affects “old women.” We can’t let the industry pinkwash us into believing the road is easy. We have to keep talking about it.