Breast cancer has been front and center in the news over the past couple of months. As a breast cancer survivor, I think this is great news! It is long past time for a real and honest discussion about breast cancer awareness, risk, and prevention in the mainstream media.
While I agree with Peggy Orenstein, author of “Our Feel Good War on Breast Cancer” (NYTimes, April 25, 2013), that breast cancer awareness has been overly commercialized to the point of “pinkwashing” (products marketed as “pink” that have been linked to breast cancer or other public health dangers) , I disagree with her that we have reached a state of overawareness. (http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all&_r=0 Unfortunately, many young women, like myself, are completely ignorant of their risk of breast cancer, until they are blindsided by a diagnosis in their twenties and thirties. Sadly, the medical community seems to be equally unaware of the risk of breast cancer in young women. I have heard anecdotal stories of medical professionals ignoring multiple complaints regarding a lump and/or the misdiagnosis of breast cancer as a skin infection. When a young woman’s breast cancer is ultimately diagnosed, it is usually at a later and more advanced stage, where treatment is less effective.
I wholeheartedly support teaching teenage girls to perform monthly self breast exams and ultrasounds and mammograms for women under 40. Many breast cancers are found by women themselves, especially breast cancers in younger women. At age twenty-seven, I found a 4 cm lump in my right breast a few weeks after I weaned my then 15 month old son. I happened to find my lump by accident. Fortunately, I was diagnosed when the cancer was still at an early stage and more responsive to treatment. Other young women are not always so fortunate.
Women, particularly young women, should be informed and aware of the risk factors that put them at high risk of breast cancer. Medical professionals must be educated about breast cancer risk factors and high risk groups. Some risk factors are well known: being female, being overweight, early onset of menstruation, lack of pregnancy or late pregnancy, and lack of breastfeeding. However, other risk factors, like the BRCA gene mutations and Eastern European Jewish ancestry, are only coming to light now, thanks to the Angelina Jolie news. (http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html.)
Like Angelina Jolie, I carry a mutation in the BRCA1 gene. This mutation renders my BRCA1 gene defective. It also means that I have a higher than average risk of breast and ovarian cancers. Like Angelina Jolie, I am in my thirties and a mother to a young child. Unlike Ms. Jolie, I did not know my full family history of breast cancer until diagnosis. I first heard of the BRCA genes and the inherent risks at my genetic counseling appointment after diagnosis. I did not know that Jews of Eastern European ancestry, like me, had a higher risk of carrying a mutation in a BRCA1 or BRCA2 gene. I also did not know that BRCA gene mutations could be passed down from the father’s side of the family until after diagnosis.
Had I been aware that I carried a defective BRCA1 gene, I would have a prophylactic bilateral mastectomy (preventive double mastectomy) before starting a family. I say that knowing what I know now and knowing full well that a mastectomy is no walk in the park. The pain after my mastectomy was the most intense pain I have ever felt. I constantly felt as though I had a family of elephants sitting on my chest. In addition, a full five months passed between my 2 surgeries, with each requiring six weeks of limited physical activity. ( Ms. Jolie’s three month timeline between surgeries and ability to work throughout is not the standard experience.)
While I had a bilateral mastectomy (one breast was removed as a preventive measure), an earlier preventive surgery would have spared me the removal of 34 lymph nodes, lymphedema, 4 months of chemotherapy, 5 weeks of radiation, and the associated side effects of fatigue, scarring, limited range of motion, hair loss, medical menopause, weight gain, mood swings, and the negative impact on our finances and relationships with family and friends.
I applaud Angelina Jolie for her brave decision to make the news of her BRCA1+ status and prophylactic bilateral mastectomy public. Her story will empower and educate many young women about their risk of breast cancer.
On a final and positive note, young women with a family history of breast cancer and/or of Eastern European Jewish ancestry who would like to pursue genetic counseling and BRCA gene testing may soon be able to obtain the BRCA gene test at an affordable rate. The Supreme Court decided that Myriad Genetics cannot patent genes, which naturally occur in the human body. As a result, Myriad Genetics and its $3,000.00 BRCA gene test will soon have some healthy and (hopefully) cheaper competition. http://www.aclu.org/free-speech/brca-faqs#08