By Erika P. Hamilton, MD
It still surprises me that in 2020, it is not infrequent for my patients with breast cancer—early-stage and metastatic disease alike—to keep their diagnosis a secret from friends, colleagues, and even family. If it were just a manifestation of wanting information regarding their health to be personal, it wouldn’t bother me, but it is more than that. They feel blamed for having cancer—we, as a society and as individuals, have created a culture of blame, shaming, and “it couldn’t be me” when it comes to living with cancer.
The most trying health care situation I have personally faced was infertility and the three intrauterine insemination (IUI) cycles and five in-vitro fertilization (IVF) cycles that I endured to have my two beautiful daughters. I, too, felt ashamed. Ashamed that I couldn’t get pregnant “the natural way.” Ashamed of the anxiety and questions such as, “Will this ever happen?” and “Will I be happy if I can’t have children?” that plagued me. Ashamed of the slipping out of work for doctors’ appointments, ultrasounds, and bloodwork.
Patients with breast cancer feel they are shamed by others, too. They feel blamed for their cancer by the litany of ads and articles they see showing everything one can do to “prevent” cancer. There is an inherent, not-so-subtle suggestion in the word “prevention” that if one did everything right, they could, in fact, prevent breast cancer. We try to educate on the more appropriate term of “risk reduction” for an individual’s ability to decrease the chance of breast cancer, but this risk is never zero. It is not even zero in the most extreme case of prophylactic bilateral mastectomies. But regardless, internet news stories, magazines, daytime talk shows, and health food advertisements all advise women of the things they can do to prevent breast cancer.
Patients are continually judged by the decisions they make in response to their cancer diagnosis. I was judged on the decision I made to undergo IUIs and IVFs to have my children, receiving comments such as, “Why don’t you just adopt?” or “Why don’t you just relax, and I’m sure it will happen.” I certainly did not choose to have infertility, but I did choose to undergo the medical procedures to combat it. Most women with breast cancer don’t even have the option of choosing to not have surgery, but they are still judged on whether they pick lumpectomy or mastectomy. Despite studies clearly showing that breast conservation and radiation have outcomes just as successful (if not a tiny bit better) than mastectomy in terms of recurrence, patients are chastised by friends and family with, “You need to be aggressive” or “You’ll never forgive yourself if it comes back” when they pick breast conservation. They are sometimes even scolded by their spouses or children for dietary habits and told to “clean up” their lifestyle and exercise more. Patients with early-stage disease are advised by people at work to undergo chemotherapy because some friend didn’t and their cancer returned. Conversely, patients with metastatic cancer are shamed when they stop therapies and are told to “not give up” when they choose quality of life over quantity of life.
All of these comments, although most of the time well intended, serve to make patients feel that if they had done everything right, they wouldn’t have cancer. I spend significant time explaining to my patients that their cancer was bad luck, that they did nothing to deserve it, and they very likely could have done nothing to prevent it. However, after some comments about exercise from family, comments from well-meaning family and friends regarding surgery choice, and comments from work colleagues about chemotherapy, they are still being blamed. They are ashamed and tired of hearing everyone’s opinion on their cancer and on what they should or should not be doing.
Part of the blame culture is an individual’s own fear and unintentional desire to distance themselves from something that terrifies them. For example, we all know that even the earliest-stage cancers sometimes come back as metastatic disease. Even among the advocate community, I see early-stage survivors making statements suggesting that patients with metastatic disease could have changed their disease course and not had cancer return. If one tells themself that their cancer won’t come back because they are “healthy, normal weight, exercise five times a week, and eat tons of fresh fruits and vegetables,” they might make themselves feel a little better about their risk, but they’re likely wrong, and they have inaccurately blamed the person for their cancer returning. It is human nature to want not to be afraid of things we can’t control, but hopefully by looking at it from the other side, we recognize how hurtful these thought patterns can be to those that were unlucky enough to have breast cancer recurrence and already have enough to deal with without our judgment.
Judgment doesn’t stop even when patients choose aggressive courses of treatment. People who want bilateral mastectomies for symmetric reconstruction or select mastectomy over lumpectomy to avoid radiation are judged for “overreacting” and doing more than was necessary. When I was in middle school, my own mother chose mastectomy for a tiny breast cancer tumor. Was it medically necessary? No. However, she was a single parent and the breadwinner for our family, and not having to undergo radiation or repeat imaging with dense breasts gave her peace of mind.
In many cases, patients with cancer get blamed no matter what they do, and the goalposts are always shifting. My patients with incurable disease are shamed if they work and shamed if they are on disability. I have heard my patients’ bone pain blamed on being too inactive at home since quitting their jobs and, conversely, blamed on them being too fatigued from doing the jobs they enjoy to be able to “fight their disease” properly. Let’s stop judging others for decisions they make in difficult situations; they are doing the best they can and what is right for them based on their situation and values.
There is another group of patients with breast cancer who face significant prejudice with their diagnosis: men. Some of the aspects I have mentioned such as surgical choice, etc., are issues that women often struggle with more, but men face the same judgments about treatment choices, lifestyle, and work pressures with the added burden of having what many consider “a woman’s cancer.” Many breast cancer ads are targeted to women, but there is a different kind of pain and judgment when one is excluded all together and dismissed as even being at risk for this type of cancer. People ask male patients, “How did you even get a woman’s cancer?” or ask them to show up to an area of the hospital for imaging that warns “women only,” and then add insult to injury by giving them the only type of gown available (pink, of course).
The 2020 ASCO Annual Meeting is rapidly approaching, and clinicians and researchers from across the globe will be creating posters, presentations, and Education Sessions with the intent of disseminating new information to help our patients. I would love for all of us to try to be mindful of the language we use because words matter. One very simple change we could make would be to choose our words precisely: we can speak of “risk reduction” instead of “prevention,” clarify that “treatments fail patients” and patients do not “fail treatments,” and stop saying “complain of” in our notes in favor of “report” or “describe.” We can partner with our advocate colleagues to seek their feedback on the way words land, on designing protocols, and understanding the challenges they face even just attending conferences, such as the ASCO Annual Meeting.
We are all just one bad day away from being in our patients’ shoes and having to live with a diagnosis that we did not choose for ourselves, so let’s be cognizant of how we would want medical decisions, risk factors, prevention, and symptom management discussed and what kind of words we would want used.
Dr. Hamilton is director of Sarah Cannon Research Institute’s Breast and Gynecologic Cancer Research Program. She is the leader of the Breast Cancer—Metastatic track in the 2020 ASCO Annual Meeting Scientific Program Committee. Follow her on Twitter @ErikaHamilton9.