By Christina Heminger, DrPH(c), MS
Doctoral Candidate, Class of 2014
The George Washington University, School of Public Health & Health Services
I am a 30-year old woman living just outside of Washington, D.C., and at the moment I wear many hats. I am a full-time student at The George Washington University, a part-time public health researcher at RTI International, and, in my spare time, I teach BODYPUMP, a barbell fitness class emphasizing weight training, twice a week. But most importantly, I am a wife, a daughter, and a friend, and in 2012 I finally allowed my personal interests to truly “invade” my professional world.
My mom is one of the most important people in the world to me – as an only child, she’s not only my mother and protector, but she’s my best friend and confidante. She is also a 2-time breast cancer survivor. My mom was first diagnosed with ductal carcinoma in situ at the age of 33. While 33 is an alarmingly young age for a breast cancer diagnosis – especially to a woman with a 9-month old baby at home – her treatment, a lumpectomy followed by 5 weeks of radiation and 6 months of chemotherapy, were seen as quite successful, and our entire family reveled in her 28-year remission. It may seem naïve, but her recent recurrence took me by great surprise, and quite honestly, rocked my very stable world. I had viewed breast cancer as part of her past, not the present or future. In February 2012, she was diagnosed with invasive ductal carcinoma and infiltrating (or invasive) lobular carcinoma. This time around her diagnosis was much more serious (called Stage 3B), and the treatment plan was much more aggressive.
I was in the third year of my doctoral program when she was diagnosed, and I had already landed on breast cancer prevention as the topic on which I wanted to focus my dissertation research. They say to “do what you know,” and I certainly knew what it felt like to be a young person referred to as “high risk.” I understood what it felt to be intimidated about how to broach the topic with my doctor, confused about which option was best for me, and generally fearful about the potentially negative results that awaited me.
Since my mom was diagnosed at age 33, I began receiving advice to begin my own screening at age 23. The common recommendation is for first-degree relatives (daughters of women with breast cancer) to be on the lookout 10 years prior to their mother’s diagnosis. At 23 I was barely immersed in my first job, barely understanding how my health benefits and insurance even worked, and barely able to think about such a daunting disease when my adult life was just beginning. I paid attention to my gynecologist’s recommendations, but also put breast cancer screening and/or risk reduction on the back burner for a variety of reasons: I needed to look into my insurance to see if a mammogram or breast MRI would even be covered; I needed to consider the implications of genetic testing for the BRCA gene (something very new at the time); and I needed to find a way to stifle my fear and rationally sort through all of the available information.
I finally took the plunge and got my first mammogram at the age of 28. In all honesty, it was not a fun process, but it put my mind at ease – until I received my mom’s call in mid-February 2012.
When my mom told me she had cancer, I went through all the stages of grief at a rapid pace, but I ultimately found myself in action mode. This wasn’t about me. It was about my mom addressing this diagnosis head on, and I focused wholeheartedly on her course of action and how I could support her.
I debated whether I should continue on with my current research plan; it wasn’t set in stone. But after some soul searching, and after nursing my mom through her double-mastectomy and discussing her most recent chemo and radiation experiences, I knew that the passion I have for this topic would make it the most relevant and impactful research area for me. I also found myself in a position where I had to re-evaluate my risk yet again, and that there had to be so many women like me who could use more targeted information, more guidance, and more confidence in making an informed health decision.
With more than 230,000 women in the United States diagnosed with breast cancer and approximately 40,000 dying annually, many women with a family history of breast cancer are facing these difficult choices. Approximately 26% of the U.S. population has either a 1st (mom, sister, or daughter) or 2nd (grandmother, aunt, or niece) degree relative that has been diagnosed with breast cancer. The breast cancer prevention discussion rose to national consciousness in May 2013 when the actress Angelina Jolie announced her decision to undergo a preventive double mastectomy, citing her family history of breast and ovarian cancer. Similarly, former Miss DC and 2013 Miss American contestant Allyn Rose has openly discussed her plans to undergo a preventive double mastectomy in her mid-twenties after losing several family member, including her mother, to breast cancer.
While women may not choose an option as invasive as a preventive double mastectomy, there are a wide variety of risk reduction behaviors that can be considered, regardless of age. I’ve decided to conduct a survey about these very topics with younger woman, ages 18-49, since breast cancer screening recommendations come into effect for 50-year-old women. I want to ask questions about women’s’ risk perceptions regarding breast cancer, their thoughts about interacting with a medical provider to try to gather information, and their confidence in being able to take preventive action – whether it be a mammogram, preventive medication, genetic testing, or mastectomy – when the options are so many and scientific recommendations are lacking. Research shows that the very people who feel most at risk for a disease may choose to avoid information in order to protect themselves from bad news. The truth is that we do not know enough about how younger women view these topics, nor are we certainly how family history impacts risk perception and subsequent information seeking.
The survey’s inclusion criteria are that respondents are: (1) female, (2) ages 18-49, and (3) have never been diagnosed with breast cancer. The survey is available in English and respondents can take the survey at any time as long as they have internet access; it should take 25 minutes or less to complete. In order to show my appreciation, I’m conducting a random drawing for four $200 VISA gift cards at the conclusion of the survey period for those participants who are willing to share their first name and email address (otherwise the survey is completely anonymous). Your passing on this survey to your friends, family and colleagues will help me ensure that more women are included in this important research, including those groups who are so often underrepresented in breast cancer studies.
Here is the survey link: https://www.surveymonkey.com/s/BCRiskSurvey
My hope is that the survey findings will positively impact both healthcare practice and policy. Women need to be better supported to make informed decisions to take control of their own health; in the long run, I hope a tool can be developed that helps women and their providers discuss family history and breast cancer risk reduction options together.
I hope my story might encourage women who are struggling with a family member or friend’s diagnosis, as well as those who simply wish to take a more proactive role in their health. With 1 in 8 women diagnosed with breast cancer in their lifetime, it is an issue that will inevitably impact us all, so we all should join the conversation and let our voices be heard.
Wishing everyone a happy and healthy Breast Cancer Awareness Month and beyond!
Christina Heminger is a Doctoral Candidate at The George Washington University School of Public Health & Health Services. She can be reached at email@example.com.
7 responses to “How to Make Breast Cancer Prevention and Care Accessible for Every Woman”
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