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Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.

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Update from the ABOUT Patient-Powered Research Network

by Sue Friedman

ABOUT logoThe ABOUT Network is the first research registry created by and for people affected by hereditary breast, ovarian, and related cancers (HBOC). Members of the HBOC community set the direction of the research.

Who can join the ABOUT Registry?

Anyone with a personal or family history consistent with HBOC can join, including:

  • people with a personal/family history of breast, ovarian, prostate, melanoma or pancreatic cancers, whether or not they have had genetic testing
  • all ovarian cancer survivors
  • all breast cancer survivors with triple-negative breast cancer
  • all breast cancer survivors diagnosed at age 50 or younger
  • all men and women with a BRCA mutation and their adult blood relatives (whether or not they have had cancer or genetic testing)
  • anyone whose family has a mutation in other genes that increase risk for breast, ovarian, prostate, melanoma or pancreatic cancers (for example, PTEN, PALB2, etc.)

Enrollment

ABOUT has enrolled over 5,800 people into the research registry, almost one half of the way to our goal of 12,000. If you have not yet enrolled, it's easy to help advance research by visiting our public portal at aboutnetwork.org, signing the consent, then filling out a 15-minute baseline health questionnaire.

Periodically we will ask you to fill out surveys and updates on your health and medical decisions, and we will alert you about clinical trials for which you qualify.

Governance

The ABOUT Network research, communications, enrollment, and dissemination are overseen by members of the community who participate on our Work Groups and Steering Committee. If you are interested in participating in network governance, you can apply by visiting the Research Advocate page on the FORCE website at facingourrisk.org/our-role-and-impact/advocacy/research-advocate-program.php.

Research

Our research goal is to learn which medical decisions lead to the best health outcomes for patients. Engagement surveys are one of the tools that help us to understand how people make medical decisions about hereditary cancer, and identify key areas where more research is needed to help consumers make informed decisions.

Our first engagement survey queried high- risk women about factors that influenced their decisions involving hysterectomy (surgical removal of the uterus) during risk-reducing removal of ovaries and fallopian tubes. About half (49.5%) of women surveyed removed their uterus and half (50.5%) kept theirs. Factors that influenced these decisions included:

  • concern about uterine cancer risk
  • doctor's recommendation
  • history of prior uterine abnormalities (such as fibroids)
  • concern about the possibility of surgical complications or side effects from removing the uterus

We found that a majority of women are not using hormone replacement therapy (HRT) after removal of their ovaries. Many experts agree that HRT or estrogen replacement therapy (ERT) is safe for women under age 50 who have not had breast cancer.

This led us to launch a second survey on decision-making for surgical menopause management. With over 500 respondents, we learned that among women who have never had cancer, 52% are currently taking HRT or ERT, 8% have taken it in the past, and 40% have never taken hormones.

Top factors influencing the decision to take hormones included:

  • treating hot flashes (85%)
  • age at the time of ovary removal (81%)
  • doctor's recommendation (81%).

The top reasons given for not taking HRT included:

  • concern about the risk for breast cancer (77%)
  • doctor's recommendation (64%)
  • concern about other side effects of hormones (54%)

When we asked women why they stopped taking HRT/ERT, most cited concern about cancer risk. Regardless of their choice about hormones, a majority of women expressed satisfaction with their decision.

We recently deployed our next engagement survey on decisions around breast cancer risk management (this survey is still open), and we are also developing a survey on family communications around hereditary cancer risk.

Check your mailbox

To reach our goal of 12,000 enrollees, we will mail enrollment questionnaires to the entire FORCE subscriber mailing list. Please do your part for HBOC research by completing the enrollment form. If you wish to enroll online and save us postage, you can do so by visiting aboutnetwork.org.

Feedback

We welcome your feedback. Please send your comments to Sue Friedman or fill out our Newsletter Feedback Form.

New to FORCE? Find the information and support you need.

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Wherever you are in the process of determining your cancer risk or risk management options, there is a good chance that other people are going through the same thing and are available to offer support.

Understanding HBOC and BRCA

The Understanding HBOC & BRCA section of this website has a comprehensive collection of information on a variety of topics, and includes links to further in-depth articles, books and websites.

FORCE:Facing Our Risk of Cancer Empowered