Beth Gainer is an author and breast cancer survivor who writes the blog-column, “Calling the Shots.” On April 17th, 2011 she posted an excerpt from her upcoming book with the same title, Calling the Shots: Coaching Your Way Through the Medical System. The book is a primer for how to advocate for oneself through a difficult medical landscape. It includes tips on finding the right doctors, how to deal with difficult medical administrators, and how to empower oneself through seizing the reins of one’s own medical care, whatever the medical outcome. With permission, the Pink Ribbon Blues Blog republishes an excerpt from the book, titled “Breast Cancer and the Blame Game.”
For more information about Beth Gainer’s work or her new book, contact her at: bethlgainer@gmail.com or gainercallingtheshots@gmail.com.
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I’m tired. Sick and tired, in fact, of the blame game when it comes to breast cancer.
Society’s message goes something like this: If you are unlucky enough to get breast cancer, it’s your fault. If you triumph heroically over the disease, however, you’ve done something right to combat it. In particular, the message from many in the media and misguided medical studies are loud and abrasively clear to us touched by breast cancer — we own our disease. This means we are to blame if we lose our battle and we are to be extolled as heroes if we defeat it.
Here are some myths that studies, media, and society tell us. These myths seem designed to silence and marginalize women in particular.
1. Breast cancer is the best kind of cancer to get because of its high cure rate. Actually, there is no cure for this disease. Even those who are seemingly cancer-free can get a recurrence at any time. By the way, even though I have had a preventive double mastectomy with reconstruction, doctors have said I still have a chance of recurrence. Huh? Oh, and by the way, I watched my friend die of breast cancer, and I don’t think she would say that her cancer was the best one to get.
2. Early detection saves lives. Not always. If breast cancer is found before it spreads, one’s odds of survival are better, but not guaranteed. In fact, this “early detection” phrase puzzles me. What is early detection anyway?
3. Breast self-exams (BSE) are the be-all and end-all. I happened to find mine through BSE, but it was partially due to sheer luck. Some tumors cannot simply be found through BSE. Should we blame women for not finding their own tumors? How about blaming them for finding their tumors after the cancer has spread?
4. Mammography is always the gold standard for detecting breast cancer. Sure, mammograms find tumors in many women, but too many individuals are still falling through the cracks. If you have dense breast tissue, the chance of an accurate mammogram reading is slim at best. My breast tissue was so dense, that a mammography missed my tumor. Other diagnostic tools need to be available and widely used.
5. If one is eventually “breast cancer-free” — whatever that means — then it’s assumed the cancer treatments are responsible for that. Depending on the cancer grade and individual’s biochemistry, cancer can either spread or not. It’s common for some breast cancers to develop resistance to treatments.
How can we blame or exonerate women for a disease with so many random factors?
The following blame games are general statements made in the guise of trying to help women understand why they get diagnosed with breast cancer. Instead they are designed to blame women for their disease.
1. We should’ve had children before the age of 35. I know way too many people in their 20s who have had children and then have had breast cancer.
2. Exercise and eating right will stave off breast cancer. While these are great lifestyle habits, they are no guarantees against getting breast cancer. I should know. Prior to my diagnosis, I was “fit” and ate right.
3. If we started menstruating earlier than later we are more at risk for cancer. Like this is useful information.
4. Breast cancer is sexy and cute and fem. Truth is, it’s ugly.
5. If one doesn’t have the BRCA gene(s) mutation, then one can’t get breast cancer. Like many, many people, I have neither mutation, and I got this disease anyway.
What I find particularly interesting is that the blame game doesn’t seem to be pointing its fingers at those who get other types of cancer: testicular, uterine, ovarian, pancreatic, etc. There’s something about breast cancer that encourages the blame game. Maybe it’s all because of the sexualization of women’s breast cancer that make women with breast cancer subject to societal blame.
I’m tired — of those with breast cancer being further victimized by the blame game.
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For more information, see the National Breast Cancer Coalition’s Myths and Truths about breast cancer.
This is such an important topic, and I’m glad to see Beth address this. Reading this reminds me of how we need to claim our power, how we must not tolerate those who try to make us wrong for our circumstances.
Some things are mysterious – who gets sick, who gets well – and the blaming is just a way to try to understand the ineffable.
Thank you, Beth, for taking a stand like this. Your power helps all of us be more powerful.
Thanks, Cynthia, for your kind words.
I really like your words “….how we need to claim our power, how we must not tolerate those who try to make us wrong for our circumstances.”
There are so many powerful voices, and I think we are all powerful enough to see where the blame really belongs: on the cancer and those who refuse to see that research funding is the key to preventing and stopping it.
As someone who works around cancer patients and is a breast cancer survivor, I can assure you that the blame game happens in other cancers such as pancreatic (must have been a drinker), esophageal (must have been a heavy smoker and drinker), lung (assumed they’re all smokers), cervical (sexually promiscuous) and on and on…
That said, the breast cancer myths previal through misinformation in fund raising and marketing. The truth is that the cause is unknown. Risk reduction is possible but nothing is promised if you follow all the “rules” and detection is not prevention. Earlier detection does not equate with overall survival.
Like you and so many others, I’m also tired of the blame game. At least a few breast cancer organizations are telling the truth. http://www.breastcancerdeadline2020.org/
Marjorie,
I appreciate your reading my posting and sharing your insights. You are right that the blame game happens with other cancers. And, now that I think of it, with heart disease (diet and exercise) and diabetes (diet and exercise), not to mention just about every affliction out there.
Maybe blaming others for their breast cancer seems more prevalent than for those with other cancers because of the massive publicity surrounding breast cancer. The saying, “Early detection saves lives,” can apply to any condition, but it seems to be the mantra of breast cancer. Those with other cancers have expressed to me how it’s not fair that breast cancer gets all the attention — they make a valid point.
Thanks for providing the link to a worthy organization.
Beth, thank you for the great excerpt from your book “Calling the Shots”. I will be adding it to my collection. I wish there had been such a book when I was navigating my way through the system. I did a lot of research and became quite knowledgeable, enough so, to refuse, chemo, Herceptin and aromatase inhibitors in the name of quality of life. All the therapies can cause or aggravate heart issues which run heavily in my family. The heart issues were not addressed in any kind of adequate manner other than reassurance that I would be closely monitored. Ahhhh but once the damage is done it cannot be undone, only addressed with medication. I, literally, called the shots, five years ago, with no regrets. Regarding the blame game, I am all to familiar with it. My own sister pulled it on me. She had to, that way she didn’t have to worry about breast cancer herself. It is a little different now that, recently, another sister was treated for ovarian cancer and a brother for prostate cancer. And so the worm turns!