Recently, our city hosted the fifth annual national marathon to fight breast cancer. This is not part of the Komen “race for the cure” but rather a grassroots effort that mushroomed from its inception five years ago into the impressive event it is today. Thousands of people participate as runners, volunteers, and cheerleaders clad in the signature color. I must admit, seeing some grown men run twenty six miles wearing pink tu-tus is both awe inspiring and a testament to dedication over self-image.
Its supporters include corporate sponsors, vendors, and exhibitors, and (no surprise) pharmaceutical companies. Its originators are a local TV celebrity breast cancer survivor and a cancer physician at Mayo clinic. It promises to donate 100% of the money to breast cancer research or care. To date, the event has raised millions of dollars and has met its contribution promise. It’s all very worthy, noble and heartwarming.
So why do I get an embarrassingly annoyed feeling when the pink parade makes its way through my neighborhood? After all, isn’t it a victory that so many people today recognize the need for education and awareness about a terrible disease that kills 40,000 women a year? Of course it is. And I have met many women breast cancer survivors who have become warm wonderful friends and I am thrilled for the overwhelming support they have.
The frustration seems even more puzzling in light of the fact that I am a cancer survivor myself. I was diagnosed in 2010 with advanced primary peritoneal ovarian cancer, the most lethal of all gynecological cancers with an alarmingly small overall survival rate. So for the past two years of chemotherapy and difficult treatment, I have struggled to suppress what feels like a petty sentiment about all the pink attention. If I just own up to it, I feel left out and I really want a parade with everyone wearing teal in support of ovarian research and care. My cancer! My body part! A cure for me! Continue reading…
The move a few weeks ago by the Susan G. Komen Foundation to stop providing grants to Planned Parenthood, the quick reversal after widespread backlash, recent staff resignations and ongoing controversy exposed a weakness in a brand many once thought unassailable. But women’s health may be better off for it.
As the self-described “global leader of the breast cancer movement,” Komen carries the weight of the breast cancer brand on itsshoulders. And women—the brand’s core constituency—took to the social media airwaves to decry what they perceived as hypocrisy by Komen. The breast cancer brand, many women argued, is built on supporting and improving women’s health and defunding Planned Parenthood flies in opposition of that mission.
Komen fell into the classic trap of seeming inauthentic to its audience. Despite pursuing an aggressive strategy to lay claim to the title of sole women’s health brand, thus allocating other causes and conditions to the margins, the foundation seemed surprised to find that it was viewed as representing the voice of women’s health.
Now that the dust is settling the question of damage remains. Will this misstep loosen breast cancer’s grip on its leadership position? And if so, is what’s bad for the breast cancer brand good for women’s health?
Make no mistake—breast cancer is the biggest brand in the history of disease. Everyone from the NFL to Yoplait to American Airlines attempts to get a piece of that brand equity each October by pink-washing themselves in solidarity. As the face of the breast cancer movement, the Komen Foundation is the main benefactor of all that attention raising an estimated $35 million each year from marketing partnerships.
Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine. My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family. One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones. The center is cheerful. The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden. Each month I see many of the same people receiving their treatments. I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.
One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.
Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.
Dr. Len over at the American Cancer Society is raising legitimate questions about the early release of findings by the World Health Organization’s International Agency for Research on Cancer (IARC) that cell phone use may increase the risk of brain cancer (hat tip to Gary Schwitzer’s HealthNewsReview). The actual study — drawn from an analysis of “hundreds of scientific articles ” — won’t be published in Lancet Oncology “for a few days,” according to IARC. Says Dr. Len:
Unfortunately, drawing broad and sweeping conclusions based on a press release and a news conference leaves many of us wondering just what the evidence shows that led to the conclusion announced today that “radiofrequency electromagnetic fields” may be possibly cause cancer in people.
The evidence, when it appears, will be murky. A few years ago, I spent several months reviewing some of the evidence in this troubling field, largely from a conflict-of-interest perspective. The global telecommunications industry funds much of the science. Even when government agencies fund research, the results are difficult to interpret. The studies invariably involve looking for a very small number of negative health outcomes (brain cancers) in very large populations. Two researchers, looking at the very same set of epidemiological facts, will often come to different conclusions. And, as often as not, those conclusions correlate with whether the the researchers are independent or whether they are on industry’s payroll.Continue reading…
My mother’s oncologist ordered the blood test, carcinoembryonic antigen (CEA), to check for the recurrence of colon cancer. The good news was that there was no evidence of recurrence. The bad news was that she didn’t have colon cancer.
She had breast cancer.
Though she was feeling better, the chemotherapy and radiation had taken its toll. For the past couple of months, she had experienced constant nausea and vomiting. During and after treatment, her hands and feet felt like they were on fire. Many times she wanted to give up and quit. Yet she persevered and felt emotionally stronger after the ordeal. She started to feel like herself again. Life began to have some normalcy. Until an insurance bill appeared asking for hundreds of dollars.
Apparently over the past year, her oncologist had routinely ordered the CEA test multiple times as part of her cancer follow-up. When she called to contest the charge, the insurer told her to talk to her doctor. She didn’t know this test was unnecessary until the bill. And until she called me, her son, a primary care doctor.
She asked her oncologist about the repeated blood tests. He simply shrugged. No apologies. No explanation. No acknowledgment of the error. Didn’t he get the lab results of the CEA? Shouldn’t he have been aware that the test was not relevant for her care?
Well, it didn’t take long to get into the New Year, did it?
There I was this earlier this week, starting my New Year right by getting exercise on my elliptical when I heard the announcement that Johnson & Johnson was partnering with researchers at Massachusetts General Hospital’s cancer center and other major cancer centers to evaluate the potential of a new technology which can isolate single cancer cells circulating in the blood of patients with known cancers.
The news in itself is an impressive step forward in this type of research. Being able to isolate a single cancer cell in a sample of blood is in a sense one of the holy grails of cancer research. Scientists have been working diligently on developing these techniques for a number of years, and to now have a technology that may in fact move that dream closer to a clinical reality where it actually improves the treatment of patients with cancer is exciting.
However, there is always a caution that comes along with these types of announcements.
First, and perhaps the most obvious, is the fact that this is an announcement of a research deal. Nothing more, nothing less. It is not a new breakthrough. It is not something that has been proven effective in improving cancer detection and treatment. Not that it is anything less than stunning to develop and demonstrate that this technology works-but as with all research it is a giant step to go successfully from the laboratory phase of development to the clinical phase of making a real difference in patients’ lives.
Indu Subaiya, Director of the Health 2.0 Developer Challenge interviews Abdul Shaikh, Program Director for National Cancer Institute's Health Communication and Informatics Research Branch at NIH about the National Cancer Institute's inspiration in putting together the Enabling Community of Data for Cancer Prevention and Control challenge. Abdul talks about NCI's support of data mash-ups and visualizations related to cancer prevention and the need to create tools for both consumers and policy makers to utilize their data to drive behavior change, and draws inspiration from Hans Rosling's TED talk in 2006.
I have stomach cancer and will undergo surgery to remove part or all of my stomach today.
While a truly expert blogger would have documented the facts and his perceptions from the moment of discovery, I have been preoccupied with absorbing the shock, weighing my options and managing the logistics. I have been short on insight, long on anxiety.
But I have regained some composure since finalizing the plan for my immediate future, so I thought I’d try to capture some of my observations about this wild period this time around. After all, I listen all the time to people talk about how they experience these few weeks between a serious diagnosis and the beginning of treatment and, having gone through it repeatedly myself, I have a lot to compare it to.
A little background: This is my fourth different cancer-related diagnosis. My stomach cancer was discovered due to the vigilance of my primary care doctor who treats adult survivors of childhood cancer and who leaves no symptom – regardless of how minor – unexplored. I had dismissed my insignificant symptom once it disappeared after a few days. However, my doctor didn’t, and it turned out to be a small gastric tumor, probably a result of the high doses of radiation that were the standard of treatment for my stage of Hodgkin’s disease in the early 1970s. The tumor will be removed Monday, along with as much of my stomach as is necessary to prevent its recurrence. While the size of the tumor and its staging leave me optimistic that I won’t need chemotherapy and radiation, I won’t know for certain until a week after surgery.
Gena Cook is the CEO of Navigating Cancer, a new Health 2.0 company aiming at getting cancer patients online with their care providers. Gena tracked me down in a Starbucks in Seattle (oxymoron I know) when I was up there last week, and she told me about the new company. Here’s the (short) interview
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