This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Drawing Attention To High-risk Screening

January 17, 2013

Reports are everywhere in the media about which celebrities underwent prophylactic mastectomy, the difficulty of their decision, and why these women made the choice. These media reports can be helpful to our community as they raise awareness of hereditary cancer risk and risk-management and remove the stigma of mastectomy. However, given the media focus on mastectomy, it would be easy to assume that surgery is the only option for high-risk women, when in fact, there are several options available to women who are at increased risk for breast cancer. When the media focuses solely on surgical risk-management, they may inadvertently send a message that this the only way to manage increased risk for breast cancer. Some women may avoid seeking information about their risk for fear that their only recourse will be surgery.

Risk is a spectrum. We know how to identify individuals in the highest risk category for breast cancer—women with a BRCA1 or BRCA2 mutation face some of the highest known lifetime risks for cancer, as high as 85% compared to 12.5% for women of average risk. Other gene mutations are also linked with a high risk for breast cancer, including Cowden Syndrome that is associated with a mutation in the PTEN gene, and Li Fraumeni that is associated with a mutation in the P53 gene. Like women with BRCA mutations, women with these other mutations face a high lifetime risk that is usually younger at onset and can be associated with a more aggressive cancer.  Continued media attention highlighting genetic counseling and appropriate use of genetic testing can be life-saving. For example, a recent publication estimated that less than 10% of women with a BRCA mutation are aware of their risk.

Current expert guidelines recommend several risk-management strategies for high-risk women with these mutations. National guidelines for breast screening in women with BRCA mutation include annual MRI and mammogram beginning at age 25 or 10 years earlier than the youngest cancer in the family. Surveillance may also be coupled with pharmacoprevention; usually tamoxifen, which has FDA approval for use to lower risk of breast cancer in high-risk women. High-risk surveillance has been shown by research to find cancers earlier when they are more treatable. But surveillance is not infallible, and we know that for some women, the cancer will not be found until it has spread outside the breast and lymph nodes. Therefore, the national guidelines also support the discussion of prophylactic or risk-reducing surgery. Although drastic, it is the most effective means for lowering the risk for breast cancer in high-risk women. Surgery is not for everyone, and surveillance is considered by health care experts to be a viable option for high-risk women to manage their breast cancer risk. Research has shown that risk-reducing mastectomy does not improve overall survival – even in women who are at very high risk – although other outcomes may be more important to women, including avoiding a cancer diagnosis or the consequences of treatments such as chemotherapy, radiation, and axillary dissection.

Genetics research is improving our ability to pinpoint risk along the risk spectrum. We can now better identify women who are of moderately increased risk. Emerging panels are looking for changes in multiple genes beyond BRCA, PTEN, and P53 that may increase a woman’s risk for breast cancer that confer an “intermediate-risk” of about 20% or higher lifetime risk for breast cancer. Women with a strong family history of breast cancer with no identified cancer mutation also fit this category. Experts have guidelines for women of intermediate breast cancer risk. The American Cancer Society recommends that women with a 20% or higher lifetime risk for breast cancer undergo annual breast MRI in addition to mammograms, starting at a younger age. Other known risk factors may influence women’s risk management decisions, including having very dense breasts that are hard to image or prior abnormal changes on a biopsy, such as atypia or LCIS.

Most women with higher-than-average risk for breast cancer begin with surveillance. Some may ultimately choose to undergo risk-reducing surgery later based on new information, abnormal biopsies, or other factors.

A lot of misinformation and misunderstanding still surrounds breast cancer screening, and women undergoing breast surveillance need credible information and peer support. Some health care providers continue to tell women that they are too young or do not need mammograms or MRI. And research is ongoing with new studies looking at ways to improve breast cancer detection in high-risk women. Medications such as metformin are being investigated for lowering risk of breast cancer. Like all aspects of living with increased cancer risk, some aspects of surveillance differentiate and isolate women from their average-risk peers.  By building a strong and unified community, educating women, providing peer support, and advocating for more research and better options, FORCE will continue to provide needed resources for this portion of our community. The stories may not be as exciting or as compelling to the media as those about prophylactic mastectomy, but we must also continue to remind the media that many options are available for women who are at increased risk for breast cancer, and emphasize the importance of consulting with genetics experts to receive credible, personalized information prior to making any risk-management decisions.

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  1. Mogatos says:

    Reblogged this on Saying NOPE to Breast Cancer and commented:
    Today’s “Thoughts from FORCE”

    • crunchster says:

      Thank you, Sue, for bringing this to the forefront. The development of a better understanding of risk and reasonable set of protocols for surveillance is often overlooked in the face of the “drama” of surgery. From what I see on discussion boards, those who choose the non-surgical route, often face a confounding Kafkaesque experience, with doctors who are often almost as confused as they are, insurance companies who make them fight for every test and then fight again when they deny payment and the inability to truly assess the risks that they may face. When the “cost” side of our personal cost/benefit analysis is either cancer or death it is crucial that we push for the tools that we need to help us make educated choices. Thanks for helping make that possible.

  2. Donna says:

    Great Article! As an Outreach Coordinator representing FORCE it is so important to be able to spread the word about HBOC and the many options offered for risk reduction. Donna Amendola

  3. […] Less than 10% of women with a BRCA mutation are aware of their risk – this is just unacceptable. Read more here, on today’s important post from FORCE. […]

  4. Linda says:

    Thanks for this article, which really resonated for me as a BRCA-positive woman who is doing enhanced surveillance regarding my breast cancer risk. Sometimes that can feel like a very lonely choice. It’s so important to emphasize, to the public at large as well as within the FORCE community, that there are options other than mastectomy for women at high risk. Enhanced screening is a viable and medically-supported choice for many such women, with the same overall survival impact as mastectomy. Glad to see FORCE countering the media emphasis on prophylactic mastectomy alone.

  5. Anonymous says:

    Thank you! You are an amazing woman whom I will never meet but have been so important in my life – thank you for putting so clearly and carefully into words this crucial information.

  6. Michelle says:

    Great reminder Sue. Thank you! This has helped me think through my talk track as well. When I talk to folks about this, I usually do think/say that there are options and that the first thing people should do is talk with a gen counselor and go to FORCE website, but I also do tend to show a greater “enthusiasm” for the surgery option. So, I’ll modify my emphasis on this. I have thought a lot about this when I watch or hear ladies’ opinions about not having the risk reduction surgery. I truly believe that our decisions are so driven by our own family and health realities, i.e., with me, after some months of consideration, I decided and then RAN straight towards my PBM (and then later PBO), as I was watching my sister fight her battle with very aggressive BC. Seeing how quickly the disease was metastasizing in her body (just few months from initial diagnosis), the decision seemed to be so clear to me. That said, I need to respect others’ choices/decisions and realize that everyone has their own reality they are dealing with. I will continue to press the message to talk with a genetic counselor to discuss everything as well as research the various options we have. 🙂

    I have two follow-up questions for you:
    > RE: the research showing that risk reducing surgery does not increase survival in high risk women… does that include all high-risk women? Previvers and survivors? I think I had seen that before but somehow this is surprising me as I read it here. How can that be?
    > When I was going through gen counseling in 2006, the surveillance option included alternating mammo/MRI every 6 months. While that was a lot of testing, it seemed to make a lot of sense to alternate these tests every 6 months. Is this what you summarize as annual mammo and MRI (that each is done every 6 months)? or is the current guidance truly annual (mammo one year and MRI the next year)?

    Sorry for the lengthy comment but I am committed to raising awareness and want to learn more. 🙂 Again thanks for the reminder and all that you do!!


  7. Sue, Thanks for this excellent post. There has been a lot of buzz about the number of mastectomies and prophylactic surgeries of late. As always, it comes back to the fact that every person needs to be his/her own best advocate and the only to be that is to become as informed as you possibly can. Then each person must make the best decisions for his or herself. Thanks again for reminding us there are choices, even for high risk women.

  8. […] other risk-management options and leaving gaps in public awareness of these options. (You can read my recent blog on this topic). Many express a desire to connect with other high-risk women undergoing […]

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