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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What Every Woman with Ovarian Cancer Should Know: FORCE’S KNOW MORE Campaign and Survey

February 18, 2016


Increased awareness around BRCA genetic testing has helped people better understand their risk for cancer and options for lowering their risk. Less attention has focused on the importance of genetic testing for people who have already been diagnosed with cancer. This is particularly true for ovarian cancer survivors, because knowing your mutation status can change medical options and improve outcomes.

Many women with ovarian cancer tell us that they were never offered genetic testing or were discouraged from pursuing it. Survivors frequently say they were told that testing wouldn’t change their medical care. But new discoveries in genetics and ovarian cancer have led to national guidelines that recommend genetic evaluation for every woman diagnosed with ovarian, fallopian tube, or primary peritoneal cancer, yet only 30% of women diagnosed receive this information.

A campaign informed by patients

KNOW MORE is a new campaign designed to help every woman diagnosed with ovarian cancer make informed medical decisions around their care. KNOW MORE will inform survivors that they meet national guidelines for genetic evaluation, and help them uncover clues about their health.

We want to understand why some women are not being given important information about their genetic status. If you have been diagnosed with ovarian, fallopian tube, or primary peritoneal cancer, we would love to hear from you! Please help us help others by taking this survey and sharing it with other friends or family who have been diagnosed with ovarian cancer.

We will report our findings back to the community and use the results to improve our KNOW MORE campaign to empower more women.

Improved knowledge can lead to improved outcomes

1 in 5 ovarian cancer survivors have an inherited genetic mutation that caused their cancer. There are many reasons why genetic information can affect medical decisions and improve medical outcomes for women with ovarian cancer and their relatives, including:

  • Genetic testing for these genes can help women with recurrent ovarian cancer learn if they qualify for a new targeted therapy treatment.
  • Testing can help women who are newly diagnosed or facing recurrence learn if they qualify for a clinical trial.
  • Women who test positive for certain mutations may have medical options to protect themselves from a new diagnosis.
  • Genetic test results can help relatives make decisions to protect themselves from cancer.

Free guidance and personalized support

Navigating decisions around genetic testing can be confusing. It helps to hear from others who have been in your shoes. That’s why FORCE developed our Peer Navigation Program to provide expert reviewed resources and 1:1 personalized peer support by specially trained volunteers who have also been diagnosed with ovarian cancer. If you would like to receive a call from a trained peer navigator, sign up here.

One Comment

  1. Sam says:

    Not sure if this is the appropriate place to ask, but I have a question. I am a breast cancer survivor, 67 years old and tested positive for a RAD50 mutation. I have a family history of several different types of cancer. I had a bilateral mastectomy in 2014 after my BC diagnosis. I am strongly considering a prophylactic hysterectomy to minimize my chances of ovarian or uterine cancer (my maternal grandmother died of uterine cancer). I saw my OB/GYN yesterday and she agrees with my approach but didn’t think my insurance would cover the hysterectomy. This is shocking to me – where can I go to get more information about how to get insurance to cover? thanks in advance!

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