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Hereditary Cancer Impact Is More Than Skin Deep

August 22, 2013

Articles about Angelina Jolie’s revelation that she underwent genetic testing and prophylactic mastectomy with reconstruction often emphasize her as one of the world’s most beautiful women, who is still beautiful after all that she has endured. This message can be reassuring; by going public, Ms. Jolie put a more positive spin on the stigmatizing effect of having a “mutation” and undergoing mastectomy. Single-handedly, she started a public dialog about hereditary breast and ovarian cancer (HBOC) that has raised awareness beyond any that has been previously achieved by media focus. Her story provides hope for those who are just beginning to understand or confront their hereditary cancer risk. These are positive developments.

Media reports on HBOC that focus only on cosmetic outcomes, however, can be a double-edged sword, demonstrating that women can come through mastectomy and remain beautiful, but sometimes setting up unrealistic expectations. Some of these articles trivialize the challenges we face, as though cosmetic outcome is the only factor that matters. While other stories sensationalize the decision for prophylactic surgery as an extreme and shocking step. The complexity of HBOC and the accompanying emotional impact is often unreported.

Media attention notwithstanding, those of us who live with HBOC know that learning about hereditary cancer risk and making medical care decisions to stay healthy are not always easy or straightforward, and outcomes are not always positive. Aided by support, credible information, and skilled caregivers, many of us survive, but not all of us emerge totally unscathed.

Survivors and previvors of hereditary cancer are sometimes pressured to feel grateful for the knowledge of their risk. Most of us do appreciate knowing about our elevated cancer risks, and subsequent opportunities to address these risks. But we have also faced loss and grief due to hereditary cancer. We have known fear, life-changing treatments, side effects, and loss of loved ones who are dear to us. In the 16 years since I learned of my own mutation and then experienced treatment, follow-ups, and surgery, I have been there myself. After undergoing mastectomy, chemotherapy, radiation, and surgical menopause in my thirties, I found very little focus, support, or guidance on issues such as sexuality and body image 16 years ago.

I am one of the lucky ones. After years of research, self-advocacy, trial and error, therapy and passage of time; at age 50 I am in the best physical and emotional shape of my life. But I know that so many others with HBOC struggle with the quality-of-life issues. Even after our best efforts, some of us face extended recoveries, long-term consequences, complications, side effects, or outcomes that are not always what we hoped for. For some women, surgery affects their sexual experience. Others don’t feel comfortable with how they look in or out of clothes. Menopause may have reduced or eliminated their desire for intimacy, or changed their ability to achieve sexual satisfaction. These women often do not regret their surgeries, but they are left with emotional scars as well as physical reminders from the procedures.

Whether we struggle with decision- making, are unhappy with our outcomes, or feel satisfied but are trying to adjust to a “new normal,” all of us have a right to process our experiences and grieve our losses. Acceptance and gratitude are not always immediate or easy to attain. Sometimes we have to work at it. Sometimes we need the guidance of experts. And sometimes we just need the support and understanding of those who have been there before us.

In our 2012 survey (unpublished) on long-term follow-up care and medical issues for survivors and previvors, 77% of 900 respondents indicated that they were “somewhat concerned” or “very concerned” about libido and sexuality, and 55% indicated that they had ongoing problems with libido or sexuality. Even when distinguishing responses from survivors and previvors, although more survivors (62%) experienced problems with sexuality and libido, a high percentage of previvors (48%) did as well. These numbers are unacceptable and speak to an unmet need among our community.

Fortunately, organizations like Livestrong are focusing on long-term issues of survivorship. Earlier this year, the National Comprehensive Cancer Network (NCCN), which establishes consensus guidelines for standard-of-care practice in cancer medicine, released its first guidelines on survivorship issues, including sexuality. But clearly, gaps remain in resources and health care services addressing these concerns, for both survivors and previvors.

FORCE programs are also designed to provide this support and guidance. For those who have difficulties accepting their bodies and changes in sexuality from treatment, mastectomy, reconstruction, or surgical menopause, our upcoming free webinar on body image and sexuality may help. Sharon Bober, PhD, Director of the Sexual Health Program in Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute, will explain how women can manage the after-effects of these mind- and body-altering interventions.

Until more attention is given to the complex nature of HBOC and the long-term consequences of our choices, public perception of the HBOC experience will be limited to what is presented by the media. Sexuality and intimacy is a personal and private topic, making it challenging to discuss with health care providers. But if we don’t bring the subject up, most doctors won’t ask us about it. We must continue to advocate for ourselves in order to improve our long-term physical and emotional wellbeing. The health care community needs to pay attention to these concerns and invest in more resources and research on sexuality and intimacy for survivors and previvors as important quality-of-life outcomes. Every woman facing HBOC, regardless of her situation and choices, has a right to feel desirable, emotionally fulfilled, and beautiful inside and out.

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7 Comments

  1. Geralyn O'Brien says:

    Well said. We are given great opportunities today to be proactive in our health and choose the path that is a lot more complicated and not as straightforward as some may think. I am now battling breast cancer for the second time. First time 15 years ago at age 42. Found out I carry the BRCA mutation this January after my second breast cancer was discovered. After chemo ended had a double masectomy and was scheduled to have my ovaries removed at the end of July. My insurance denied because having the BRCA mutation is not enough reason. I am now going though my appeal and hoping for the best. We need to get our message out to the public loud and clear that BRCA 1 and 2 are serious. I thank organizations like Force and BRCA Awareness and of course Angelina Jolie for helping bring a voice to what we are going though. These are not easy choices we make for mastectomys, ovary removal but they are the choices and treatment plan made between my Doctors and myself and should not be determined by our insurance companies. Thanks for listening….Geralyn O’B

    • facingourrisk says:

      Hi Geralyn,
      I’m sorry about your second diagnosis of breast cancer.Thanks for sharing your personal experience with HBOC.I hope that stories from those that have walked this path provide you with hope and encouragement!

  2. Lee Asbell says:

    Thank you for this thoughtful post. As usual, it is spot on.

  3. Anonymous says:

    Having just had a prophylactic mastectomy last week, I find your post especially poignant. Thank you.

    • Geralyn O'Brien says:

      Did your insurance give you any trouble since it was prophylactic? Or are you BRCA positive and was that enough? Thanks

  4. Ann Woods says:

    Just what I needed at this very moment (one year anniversary of double mastectomy is today). I couldn’t even bring myself to ask a mentor about these issues. As open as I am, they are hard to talk about. Thank you for your article. I wish I could make the webinar, but I have to work. 🙁

    • facingourrisk says:

      Hi Ann,
      No worries, the webinar will be available on-demand about 3-4 weeks after the live webinar. Stay tuned. This topic will also be addressed at our conference in June in Philadelphia.
      Much love,
      Sue

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