A few weeks ago, I saw a woman for genetic counseling. She was in her early 60s, and had been diagnosed with breast cancer twice in the same breast. The first time was in her 30s, the second time was within the past few months. Before starting to review her family history, I asked her about her prior cancer diagnoses. This recent cancer diagnosis was identified on a routine mammogram, but her first diagnosis would have been before she started routine breast screening via mammography. “How did you find it?” I asked…
She then proceeded to tell me the following story: “Well, you see. I got this pamphlet in the mail with instructions on how to do a breast self exam. I had never done one before. And usually, I would throw these things out, but I figured, sure, why not? And I took the pamphlet with me into my bedroom, followed the instructions, and did a breast self exam. And I felt something. So I went to my doctor and told her that I had felt something in my breast. She said, “don’t tell me where you felt it, let me try to find it myself.” So she did a breast exam and she didn’t feel anything. So she had me show her where I felt it, and sure enough she said, ‘you know, I do feel something there. I’m sending you for a biopsy.’ And that’s how they found my first breast cancer. That pamphlet saved my life. I wouldn’t be around today if it wasn’t for that..”
In the last few years, there have been a number of controversies over the best route for breast screening. Should routine mammograms begin at age 40 or at age 50? Should women have clinical breast exams performed by their physician, and if so, how often? Should women perform self breast exams at all? As more research is being done in the realm of breast screening, different opinions have been emerging as to the efficacy of these different screening methods.
One of the interesting shifts has been away from the breast self exam in favor of breast self awareness. The idea behind breast self awareness is that a woman should be aware of how her breasts normally look and feel, so that she can report any changes to her doctor. This differs from the breast self exam, which is a structured procedure of how women should be evaluating their breasts on a regular basis. Many women feel uncomfortable doing a breast self exam, unsure of what they should be looking for. Research found that not only did breast self exams not reduce the number of deaths from breast cancer, but it actually increased the detection of non-cancerous lesions, which required further evaluation, such as a breast biopsy. This research has contributed to the change in recommendations away from self breast exams and toward self breast awareness.
But then I think about the countless stories that I have heard of women, including my patient, who found their own breast cancer by doing a breast self exam. I hear her words echoing back, “That pamphlet saved my life. I wouldn’t be around today if it wasn’t for that…” and I wonder how she would feel about the change in recommendations.
For those of us with friends or family members who have been diagnosed with breast cancer, or with personal diagnoses of breast cancer ourselves, National Breast Cancer Awareness Month can feel empowering, overwhelming, or even stifling. And with the statistic of 1 in 8 women developing breast cancer in the United States, breast cancer is a disease that should feel relevant, even if one does not have a “personal connection” so to speak. Perhaps for all those who don’t see the relevance, they can think of this October as Breast Awareness Month, and instead of focusing on this disease they can focus on the breast awareness which might someday save their lives.
Guest Blogger, Elana Bengualid, writes about her thoughts on the “Angelina Effect“:
Angelina Jolie is one of the world’s most prominent actresses, and is also a statistic of the 1 in 500- 1 in 800 people who have an increased risk of developing breast and/or ovarian cancer due to a mutation in the BRCA1 or BRCA2 gene. Therefore, when she valiantly shared her story with the public it undoubtedly created an immediate medical and cultural phenomenon.
It is evident that Jolie has inspired many to be proactive about their genetic health as the labs that test for the hereditary breast and ovarian cancer mutations have experienced a dramatic increase in the demand of test orders since her story was published in The New York Times in May. Most notably, Jolie’s decision to undergo a double mastectomy consequently led to about 250,000 Google searches on the prophylactic surgery in just one day, greater than the amount of people who will be diagnosed with breast cancer each year. Jolie’s story is empowering for she was courageous in taking appropriate steps to decrease her risk of breast cancer from 87% to about 5%, and through her journey she was able to change the image of this somewhat daunting process by exuding confidence, and becoming a public example which others can emulate.
However, at what age should one confront this information? How will Jolie’s actions influence young men and women who have similar family histories of breast and ovarian cancer? It is important to note that genetic counselors do not normally recommend that a person get tested before the age of 25. Recommendations for screening and preventative surgeries for high risk start at the age of 25, for the patients would not be able to do anything with the information except process and share it with family a member (which is important too!).
As a summer intern for the Program for Jewish Genetic Health, I was privileged to able to shadow the genetic counselors. One of the cases I observed was counseling for a 23 year old woman whose mother had passed away from breast cancer at age 39. The patient had been waiting to get tested for the BRCA mutation since her mother’s diagnosis, four years prior. Although young for testing, the patient was mature and her determination to confront this situation with the utmost diligence was admirable. Seeing the strength with which this young woman, three years older than I, pursued genetic counseling was inspiring. She was empowered to be proactive about her health, and that unwavering resolve is a quality that everyone, no matter what the situation, can learn from.
Personally, I do feel that it is extremely important to know if an individual is a BRCA mutation carrier not only for that person’s health, but also for their family members’ health. Regardless of what is considered the “right” age by medical professionals, certain individuals may be emotionally and psychologically ready to undergo testing at an earlier age. For these young women, it is amazing to have a public figure like Angelina Jolie serve as a role model and give them someone to relate to who has already experienced this, and persevered with grace.
Elana is a summer intern for the Program for Jewish Genetic Health. She is a junior at Barnard College and is majoring in Spanish and Latin American Cultures.