“If we continue making progress at this current rate, it will take more than five hundred years to end breast cancer.” — Fran Visco, President of the National Breast Cancer Coalition
Searching For Answers
I know this sweetheart of a nurse practitioner named Dierdre who works for the local gastroenterologists — the GI guys, a.k.a. the “Plumbers,” although urologists and gynecologists may have some claim to that nickname as well. The last time I saw her was about two weeks before I was diagnosed with breast cancer. I had been working my way through my annual maintenance health visits, so I had also just scheduled a colonoscopy. After I got diagnosed with The Beast, I postponed the colonoscopy, figuring I’d reschedule it after a few months. Little did I know that I would soon get so exceedingly sick of going to doctors’ offices and medical appointments and being poked and squished and tested, not to mention slashed and burned, I would be unable for two long years even to contemplate allowing anyone to explore my plumbing unless it was an emergency.
Today, I finally saw Dierdre to rechedule. And to bring her up to date on what I’ve been up to for the past two years. She’s a great listener — compassionate, empathic, intelligent. And you know what happens sometimes when you tell your sorry tale to someone who actually gives a crap — you scratch up some of the feelings you had going through it in the first place. Wasn’t difficult anyway. What has been difficult lately is eluding the spectre of my experience, because it’s bloody Pink Month. The only time I can be certain of complete escape is when I’m unconscious.
As the end of the visit approached, we fell to talking about the symbolism and ubiquity of ribbons. I asked, rhetorically, “Why pink, for god’s sake?” This launched a brief discussion of various ribbon colors, of which she and I could name a handful or so. Neither one of us, despite the context, knew if there was a color for colon cancer. “Brown?” I suggested. “I hope not,” she said, grinning. “If it’s brown, nobody would give money.” When I got home, I had to look it up.
ChooseHope.com provided the above reference chart. Turns out that dark blue stands for colon cancer. And if you’re sick of pink, you can wear an emerald green ribbon instead, because October is also Awareness Month for Liver Cancer. Choose Hope is an organization that raises money to fund research for all cancers, and its funding recipients are listed at the link beginning this paragraph. It was started by three women, two of whom had breast cancer and one who did not. Like many of us, they wanted to do something to transform their helplessness in the face of the big C. I like that their efforts expanded to include all cancers. Yes, they sell stuff, but it’s all pretty low key. Their motto, if they can be said to have one, is “Cancer Sucks,” and it’s displayed simply and proudly on a number of items, all of which are straightforward shirts, buttons and key chains, and none of which pays the salaries of corporate fat-cats trying to polish up their public image and get a tax deduction. Gee. How refreshing!
Meanwhile, back in Pink Month, the barrage continues. You can redecorate your home, your wardrobe and your social activity in breast cancer pink. You can “Sip for the Cure” with a cup of tea, “Knit for the Cure” with a certain brand of yarn, and for the more athletic, lift Barbells for Boobs. You can fill your house with pink knickknacks, click for the cure on a pink laptop with a pink computer mouse, and jog in pink athletic shoes, the purchase of which is supposed to help raise money for breast cancer programs and research. Public buildings all over the world are getting lit up in pink lights to raise awareness. Health care bloggers and journalists are pumping out articles on prevention and research. Survivors have even been campaigning to turn Facebook pink. Anyone who is NOT aware of breast cancer by now is either deceased or living in another solar system.
But what does all this really accomplish? What kind of awareness are we raising? I have been visiting the sites of major and minor fundraisers, wading through all the heart-warming hype and glam photo shoots, attempting to find out where the money goes. On some sites, like Barbells for Boobs., it’s easy. There is a link right on their home page linking you to their raison d’être, which is to help young women in particular get screening mammograms. On Avon’s Walk for Breast Cancer site, under the “Cause” tab at the top of the home page is a link called, “How the money is spent.” For other organizations, like the National Breast Cancer Coalition, you have to do a little more work, but there are clearly labeled links describing information about “What We Do,” “Successes” and “Finances.” On the Susan G. Komen site, you will find out how they spend their money under the Research & Grants, but to get to a financial statement, you need to go to a small link at the top of the home page labeled “About Us,” then scroll down to Financial Information to see their annual reports and tax returns.
Okay, fine. We all know that millions upon millions of dollars have been raised, funding everything from work on a breast cancer vaccine, to giving breast cancer patients rides to treatments. But how useful is the kind of awareness we have raised from the virtual Pink Nation created by fundraisers and their corporate partners? Where exactly are we at in finding a cure? Not very and not far, as it turns out.
According to the National Breast Cancer Coalition, in 1975, 1 woman in 11 would develop invasive breast cancer in her lifetime. Today, 1 woman in 8 will develop invasive breast cancer in her lifetime. In 1991, in the U.S. alone, 43,435 women died of breast cancer, or 119 every day that year. This year, despite the tremendous amounts of money spent on research, 110 women still die from breast cancer every day, which comes out to an estimated 40,150 women who will die in 2010. That’s not a lot of progress for a span of 35 years.
It is true that overall, more and more people survive cancer than ever before. But certain issues of survivorship have not improved or have worsened as more of us survive longer. The National Comprehensive Cancer Network recently reported that 70 to 100% of cancer patients who receive a combination of treatments including surgery and radiation or chemotherapy or bone marrow transplantation will develop cancer-related fatigue. After decades of enabling us to live after being treated for cancer, cancer-related fatigue continues to be under-reported, under-diagnosed and under-treated. An alarming percentage of cancer survivors suffer from long-term fatigue, which affects their quality of life across the spectrum, from being unable to resume full-time careers or even the same pre-cancer career, to being completely disabled. Meanwhile, the physiological reasons for it are still largely unknown. Potential mechanisms that have been proposed that may contribute include inflammatory responses in the immune system, endocrine or sleep-cycle disruptions, muscle wasting and genetic anomalies. Nor has effective treatment advanced appreciably, perhaps primarily because many physicians who treat patients with cancer do not know how to assess them for cancer-related fatigue, or worse, do not even know that they should assess them for it.
To a certain degree, the most notable recent progress in the fight against breast cancer has been made for those who carry BRCA genetic mutations, which confer a 56 to 84 percent lifetime risk of breast cancer. Finally, a longitudinal study was published last month, demonstrating that prophylactic breast or ovarian surgery does indeed reduce breast cancer risk significantly in women with one of these mutations.
For all the pink-washing out there, it’s remarkable how many people remain ignorant of the implications of breast cancer. Many people still seem to think breast cancer is curable. Those of us who’ve been treated for it know that once you’ve had it at all, there is a lifetime risk of recurrence and new occurrence. I call it The Stalker. Then there are the people who think that a woman is only at risk for breast cancer if she is related to someone who had it. In fact, up to 75% of women who get breast cancer have no family history. There is so much misinformation, myth and hyperbole out there in the media, it’s no wonder that awareness of breast cancer does not translate into awareness about it.
Arguably, the most remarkable thing to occur this month is the announcement by the NBCC that they have set a deadline to end breast cancer by 2020. As usual, reportage on this has lacked accuracy or thoroughness. I will not add to that by summarizing it myself. Rather, I’ll let the members of NBCC speak for themselves.
Hmm. Took the words right outta my mouth.
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