Breast Cancer Fatigue Syndrome (BCFS) may be setting into our collective consciousness. This newly named, unofficial and insidious condition afflicts individuals who've become desensitized to all things having to do with breast cancer. The list of topics people shy away from, now, includes breast cancer screening and particularly mammography, chemotherapy and new, less-toxic targeted therapies. Issues women face after treatment, like estrogen depletion, feelings of sexual inadequacy, reduced bone density and fear of recurrence are, well, better not to discuss.
Pink distracts us from the real thing -- tumors that kill tens of thousands of ordinary mothers, sisters, daughters and friends in the primes of their lives. At the same time, it serves as a useful surrogate: it's easy to say you're sick of all the silly ribbons or that the tone of breast cancer awareness has become shallow and too commercial. It would be harder and very un-PC to say: "I'm tired of thinking about breast cancer, can we talk about something else now?" So we trash the ribbons and chastise their distributors, instead.
The symptoms of BCFS vary and can be subtle, so much so that some affected persons aren't even aware they have this condition. They may, for example, subconsciously avoid malls in October or, if an awareness ad comes on their TV set, go right then to the kitchen for a snack. Others are more overt in their discomfort with the topic; they might actively complain about the pink spectacle, or speculate that the awareness campaign is a money-making scheme. Others are so fatigued by BCFS that they just stop caring and turn inward, trying as best they can to avoid what's happening around.
The Centers for Disease Control reports that breast cancer ranks first among invasive cancers. It's the most common malignancy among women in the U.S., accounting for nearly one in four tumors aside from those of the skin, according to the American Cancer Society's latest fact sheet. In North America, the death rate from breast cancer approximates 45,000 women per year. According to the World Health Organization, the number of deaths from breast cancer, worldwide, is approximately 519,000 per year.
To be clear, BCFS is entirely different from real fatigue that affects people who have cancer. It's not the same as chemo-brain, which can alter how people with cancer concentrate at work and in their homes. It's not the same sort of distraction that happens in cancer patients due to worrying. Tiredness from anemia is a very real phenomenon from which many cancer patients suffer, either because the disease has infiltrated the bone marrow, where blood cells are formed, or as a side effect of treatment.
This new fatigue syndrome can be quite harmful. If people suffering from BCFS feel tired of breast cancer awareness and become less sympathetic to patients' plights, they may lessen their contributions to cancer charities. With reduced funds, it's harder for cancer researchers to accomplish their work, and for private agencies to provide needed support for patients and their families. People may behave less kindly toward those in their community who have cancer, less willing, for example, to drop by with a meal or mind a patient's daughter during a late-afternoon chemo infusion.
I hope this is just a phase, maybe a retro thing, as if we're trying to somehow reclaim the naivety of the 1960's, when few publicly acknowledged the problems faced by women with breast cancer who, often, felt ashamed of their illness and were reluctant to ask for needed support. To go back to that level of awareness would be devastating, the opposite of progress.
The solution, I think, involves keeping awareness of breast cancer in our minds year-round, starting with this November first. Maybe a less concentrated, steadier campaign of knowledge about all illnesses would be more sustainable in the long term. The worst possible scenario would be for the effort to be so intense that people feel contempt for those with cancer, and turn away.
Follow Dr. Elaine Schattner on Twitter: www.twitter.com/medicallessons
Thank you for your thoughtful comments. I agree that turning away from pinkness can have a positive effect, of "making it real" when we think about breast cancer. At the same time, I recognize that the awareness campaigns have, so far, accomplished huge progress in terms of people's knowledge about the disease, lack of shame in getting medical care, and fund-raising for needed research.
From my perspective as an oncologist, and as a patient, I see the foundations' goals as overlapping and similar, if not exactly the same. We should work together on this, not apart.
Wake up, folks. There's so much more to do!
Barbara A. Brenner, JD
Executive Director
Breast Cancer Action
www.bcaction.org
I think your blog "Breast Cancer Fatigue Syndrome is Harmful to Patients" completely misses the point of pink ribbon "fatigue" and tells only half the story. You seem to assume those with your so-called "breast cancer fatigue syndrome" will just stop doing anything about breast cancer, including offering help to loved ones who are sick. The trained breast cancer advocates I know who have "pink ribbon fatigue" or "breast cancer fatigue" do not want to walk away from breast cancer. They agree that pink ribbons and awareness will not end this disease. They want to rise above the pink haze, understand the truth about breast cancer, and acknowledge that 25 years of Breast Cancer Awareness Month have not given us the progress we need. I was diagnosed with breast cancer in 1989 and have watched the breast cancer movement with great involvement and interest for over 20 years. I have decided to back the National Breast Cancer Coalition's bold new initiative, Breast Cancer Deadline 2020 (www.BreastCancerDeadline2020.org), because it offers a strategic plan for ending breast cancer by January 2020. "Breast Cancer Fatigue" does not mean you become "desensitized to all things having to do with breast cancer." In fact, Breast Cancer Deadline 2020 calls for just the right medicine for the syndrome: for all stakeholders to move beyond pink awareness and refocus their energy, resources, and talents on the goal to end breast cancer once and for all.
I agree there is a lot of breast cancer fatigue happening. Some is breast cancer awareness fatigue, some is the ubiquitous pink ribbon symbol fatigue, some is cause-based marketing fatigue, and some is real breast cancer fatigue. Since I and 3 of my 5 sisters have had treatment related to breast cancer, I am all too well aware of real breast cancer fatigue.
As an advocate who has been working in the field for 14 years, I am also well aware of the BCFS in all its ramifications. That is why I was so rejuvenated by the National Breast Cancer Coalition's new initiative to stop it all! The 2020 Deadline will end this fatigue because the goal is to end breast cancer by January 1, 2020! Risky to set this deadline? Absolutely. But what has happened to this point is to have incremental advances. Yes, the percentage of women who will die from the disease this year is lower but the absolute number is astonishingly high, with no real end in sight.
NBCC has raised the bar! By bringing together the brightest of all the stakeholders, by thinking outside the box, by demanding accountability, the goal of eradicating breast cancer by 2020 becomes realistic.
I don't see this as "fatigue" at all. In fact, I see it as the OPPOSITE of fatigue -- people are becoming energized to want to understand the truth. They are beginning to reject the dogma of "awareness", and are beginning to ask hard questions about why research has learned so much yet accomplished so little (women are still dying of breast cancer at nearly the same rate).
I see many replies to this article from people who think they have important ideas about how to stop breast cancer (and none of the ideas are the same). I submit that we don't yet know how to stop breast cancer. Yes, we need more research but we must change the way we do the research -- it must be coordinated and focused research. In addition, we need a sense of urgency. I support the deadline campaign of the National Breast Cancer Coalition (NBCC). http://www.breastcancerdeadline2020.org/
http://www.diseaseproof.com/archives/breast-cancer-how-many-lives-do-mammograms-actually-save.html
My advice is: 1, take down the pink ribbons and burn them; 2, end pink merchandising programs; 3, cut ties to profit hungry drug and medical device manufacturers. End the massive, month-long PR blitz that bullies millions of women into undergoing unnecessary screening that provides extremely modest benefits but exacts a huge financial, emotional, and physical toll in overdiagnosing and overtreating thousands of women every year.
Start telling the truth: early diagnosis does not necessarily extend life, some breast cancers never affect the health of the women who have them, some breast cancers will kill regardless of how early they're found. Stress that it's up to each woman to weigh the risks and benefits of screening and make her own decision about whether to be screened.
Start talking about real prevention (never getting breast cancer in the first place) and not phony "prevention" (early detection). Stress the best research on what women in different risk categories can do to minimize their chances of developing the disease (diet, exercise, preventive surgery etc.). Begin calling for an intensive research program into the environmental causes of breast cancer.
Remember, word is spreading. The old myths, lies and half truths ain't gonna cut it any more.
Another problem, pathologists cannot always agree on what exactly constitutes breast cancer.
http://www.nytimes.com/2010/07/20/health/20cancer.html
Doctors can't tell what is and what is not cancer - so EVERY woman with the tinest, most meaningless abnormality has surgery and radiation. They might also have chemotherapy and hormone treatment. ALL unnecessarily. How often does this happen? For every woman whose life is extended by screening mammography TEN receive unnecessary cancer treatment. Please see www.screening.dk for the unbiased facts.
Yet overdiagnosis is literally never even mentioned by anyone pushing screening mammography! No, all we get are women who believe that their lives were saved bullying every woman they know to irradiate their breasts every year after 40. We never hear that most DCIS victims never even needed treatment. How long do you think this dumb happy-talk about screening mammography can continue? How many more lives have to be ruined? It's clear that those with skin in the game (like Dr. Schattner) will fight tooth and nail to keep thinks as they are. And that's a sin.
Take a look at the pink schlock that floods the stores and the internet, and ask yourself who really benefits. In the US, this disease is overdiagnosed and overtreated, and the profit hungry drug makers, along with the rest of the breast cancer industry, love it. In fact, they pay "breast cancer educators," such as the author of this article, large sums of money to write slick public relations material, filled with guilt and fear inducing images to keep us all in line -- and lined up for our mammograms.
But this October, millions of American women opened their eyes to the ruse and put their foot down. Let tomorrow, October 31st, 2010, be the final day of the very last Breast Cancer Awareness Month. End the media hype now.
What I find fascinating also is that a woman in the U.S has a greater chance of developing breast cancer than a pack-a-day smoker does of developing lung cancer.
1. Big companies go pink with their products. However, the products they sell create their own share of health risks. Here's one example: http://bit.ly/dxy855
2. Call it a conflict of interest or irony...the NFL is all pink. However, instead of fast-forwarding through the commercials, watch some of them. Once again, the food products being advertised cause their own set of health risks. Take a look: http://bit.ly/4QikjZ