Thrive Newsletter

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May 21, 2018
Sister Act spreads awareness about ovarian cancer
Medical societies discourage use of direct-to-consumer genetic testing
Video resources for patients and survivors

Sister Act spreads awareness about ovarian cancer

After losing their oldest sister to ovarian cancer, three women spread awareness about the disease

The Wright sisters at a family wedding in Mexico. From left: Carol Sellar, Debbie Canham, Shirley Wright and Valena Wright, MD.

The Wright sisters at a family wedding in Mexico. From left: Carol Sellar, Debbie Canham, Shirley Wright and Valena Wright, MD.

For the last two years, the three Wright sisters have commemorated World Ovarian Cancer Day (May 8) with an awareness video about the genetic risks, symptoms and treatment of ovarian cancer, which is in memory of their oldest sister Debbie (Wright) Canham, who passed away from the disease in 2016 at the age of 55. Valena Wright, MD, Director of Gynecologic Oncology at Lahey Health and Medical Center in Burlington, MA, explained that the video was made with a fourfold purpose in mind:

• To encourage women to have symptoms evaluated and not feel pressure to dismiss concerns about their health and their body.
• To inform people that genetic testing is indicated for all women who have ovarian cancer and encourage them to discuss this with a genetic counselor.
• To raise awareness that women at high risk for ovarian cancer may have risk-reducing surgery (preventative removal of tubes and ovaries) that may save their lives.
• To inform women that many cases of ovarian cancer start in the fallopian tubes and that removing the fallopian tubes may prevent cancer.

The Wright sisters formed a close bond during their childhood in Charlottetown, Prince Edward Island, Canada.

“We had exceptional parents who raised us with strong family values and a great sense of community,” Dr. Wright said. “They worked hard to ensure we enjoyed our time together with regular family meals, trips to the library and shared experiences including boating, cross country skiing, water skiing and camping. Debbie married at age 18 and travelled extensively with her husband, who became a pilot with Canadian Air Force. She leaves behind a daughter, son and two lovely grandchildren.”

After Debbie and her family returned to Canada after being stationed in Germany, she had been told she had an ovarian cyst that needed follow-up, but she had not experienced other symptoms. Eventually, she had some bloating and pain that made her seek follow up.

“She was diagnosed with Stage 1 papillary serous ovarian cancer [20 cm] that was limited to the ovary,” said Dr. Wright. “She received excellent care in Ottawa, Canada. She had surgery followed by first line chemotherapy prior to recurrence about two years later. She received multiple chemotherapy treatments and despite chemotherapy continued to work as an audiologist for children with hearing deficits in the public school system. She spent as much time as possible sailing with her family.”

“Debbie was constantly looking at clinical trials she could take advantage of,” said her sister Carol (Wright) Sellar, who is the Manager of an OB-GYN Clinic in Charlottetown. “She concentrated on being as healthy as she could. She was the life of the chemo room, always positive and very supportive to the other patients she got to know. She concentrated on healing herself and working to improve the life of the kids she worked with.”

Although Debbie tested negative for the BRCA mutation that can cause ovarian cancer, all of the sisters made the personal decision to have their fallopian tubes and ovaries removed preventatively.

“All of us now have had ovaries and tubes out,” said Carol. “Valena and I encouraged Shirley to have her ovaries removed; with our history, why take the chance?”

Shirley admitted she was “lucky” to have her fallopian tubes and ovaries removed.

“I had pre-cancerous cells in the fallopian tubes; luckily the surgery happened early enough that the ovaries and other tissues were not affected,” she said. “My family doctor had told me, ‘Don’t worry; you’re healthy and don’t really need to do this surgery.’ I delayed for about two years, concerned about early surgical menopause and having the surgical procedure done. At my family’s insistence I did go ahead with the operation. My sister died three days after my surgery.”

Dr. Wright noted that according to recent research published in the Journal of Clinical Oncology, “More than 1.2 million women with a personal history of breast and/or ovarian cancer meet national guidelines for genetic testing but remain unscreened.”

She added that for women with a positive family history, deciding whether risk-reducing surgery is indicated should be a decision made with input from a genetic counselor and a gynecologic oncologist or physician familiar with hereditary cancer syndromes. Many women and some primary care physicians may not be familiar with the rapidly expanding field of cancer genetics and the more comprehensive testing panels available today that were not an option at that time my sister was first diagnosed.

“The Society of Gynecologic Oncology has always advocated for genetic counseling prior to ordering genetic testing to help patients understand implications of both a positive and negative screen that also takes into account family history,” said Dr. Wright.

After Debbie’s death, her sisters were highly motivated to advocate for other women who might be at risk ovarian cancer.

“We all felt an incredible loss and sadness,” said Shirley Wright, a Realtor and cellist in Calgary, Alberta, Canada. “Somehow this video project was helpful to us in grieving and hopefully helpful to others to raise awareness.”

Shirley had attended musical improvisation workshops for classical musicians directed by American cellist and composer Eugene Frieson to create the original soundtrack for the video. “Threnody,” the composition used in the music video, is a song of lament, created in Debbie’s honor by Shirley’s musician friends after they listened to the sisters’ story as told by Dr. Wright using pathology slides and electron microscopic images of fallopian tubes and ovaries.

Both Dr. Wright and Carol worked on editing the video and distributing the finished product through Facebook as well as the medical offices where they worked. The sisters plan to release a video each year for World Ovarian Cancer Day for the foreseeable future.

“Cancer makes you appreciate your life and focus more on what really matters,” said Dr. Wright. “Health symptoms need to be evaluated, and genetic screening for ovarian cancer has the potential to save lives.”

Medical societies discourage use of direct-to-consumer genetic testing

After the U.S. Food and Drug Administration (FDA) authorized the 23andMe, Inc., Personal Genome Service® Genetic Health Risk Report for BRCA1 and BRCA2 (Selected Variants) on March 6, the American College of Obstetricians and Gynecologists (ACOG) issued a media statement as well as a Practice Advisory discouraging direct-to-consumer (DTC) genetic testing. This Practice Advisory has been endorsed by the Society for Gynecologic Oncology, the American College of Medical Genetics and Genomics, National Society of Genetic Counselors, and Nurse Practitioners in Women’s Health.

According to the Practice Advisory, “Identifying the appropriate genetic test for each individual and interpreting genetic test results are complex processes. A patient should be counseled regarding the potential limitations, risks and benefits of the information before genetic tests are ordered. Post-test counseling regarding cancer risk and implications for subsequent care is also imperative.”

One of the main concerns about this specific test for BRCA mutations is the lack of reassurance associated with a “negative” test result. The 23andMe test only screens for three specific mutations out of the more than 1,000 known BRCA mutations and dozens of other genes associated with hereditary breast and ovarian cancer.

Since the 23andMe test only evaluates for the presence of three mutations within two genes, a negative test for three specific mutations may lead to false reassurance for an individual woman, and the potential that she will not obtain the appropriate evaluation and counseling to determine if she may be a candidate for additional testing.

The interpretation of “positive” or abnormal test results are similarly problematic, since interpretation of a positive test requires the context of family history and an assessment of other risk factors to accurately quantify personal risk.

As stated in the Practice Advisory, “Should a patient pursue direct-to-consumer testing and seek medical advice after the results are available, the FDA recommends confirmatory testing and genetic counseling. Direct-to-consumer test results should NOT be used as the sole basis for counseling regarding cancer risk, and should NOT be the sole determinant of subsequent follow-up and consideration of risk-reducing strategies.”

Video resources for patients and survivors

patient2The Foundation for Women’s Cancer (FWC) and the Society of Gynecologic Oncology (SGO) have a number of video resources for women who may be at risk for gynecologic cancers or who have been recently diagnosed.

Spotlight

Community outreach played an important role in the 2018 Society of Gynecologic Oncology Annual Meeting on Women’s Cancer, held March 24-27 in New Orleans.

Awareness

September is Gynecologic Cancer Awareness Month.  After creating the month in 1999, the Foundation strives to bring attention about these cancers through public awareness campaigns.

Research

The Foundation is proud to offer various Research Grants and Awards. Click here for more information.

Education

FREE Gynecologic Cancer Survivors Courses throughout the country. For more information, click here.