A woman is faced with a daunting history of cancer. She, the fifth woman in three generations to have breast cancer plus an aunt who had ovarian cancer, decides to have her ovaries removed. For this mom, the pros of reducing her chances of ovarian cancer outweigh the cons of surgery.

But another high-risk patient isn’t ready. Ovarian cancer risk-reduction surgery would abruptly bring on menopause. And for a woman in her early 30s who wants to have children, the timing just is not right. Maybe in 10 years, she decides.

These patients in the Fox Chase Family Risk Assessment Program, Philadelphia, shared their experiences with Carol Cherry, MSN, RN,C, OCN, who led a collaborative effort to develop Ovarian Cancer Risk-Reducing Surgery: A Decision-Making Resource.

The book combines clinical expertise with patient experience to give a woman at high risk for ovarian cancer a guideline on her risk-reduction options.

Making the Decision

Cherry, along with Mary B. Daly, MD, PhD, director of the Fox Chase Family Risk Assessment Program, writer Kristine Conner and others on the team compiled this information into one resource.

The book begins by explaining genetic mutations and risks causing cancer, then leads to considerations for surgery, managing postsurgery menopause and how surgical menopause impacts sexuality.

 In each chapter are questions for patients to ask their provider, such as: What side effects have your patients experienced after surgery? If I decide not to have surgery, how will you monitor my care?

“The book is meant to be used and written in,” Cherry said. “There also is a decision tool where it walks you through questions to ask yourself and you write down your answers. As you work through that process, it enables the decision making.”

Intertwined throughout the book, the authors included quotes from high-risk patients and their partners. To research these experiences, the team conducted focus sessions with both of these groups.

“We recognized we weren’t doing the best job possible in preparing women,” Cherry said. “We didn’t have enough feedback about what it really was like for them until they started telling us.”

One patient tells of her experience with surgical menopause: “In addition to having hot flashes, I had trouble sleeping regularly — even several months after surgery. What really helped was changing my diet and exercising more often.”

Partners of the women tell their experiences, too, and how the surgery has impacted the couple’s intimacy. “We put a whole section in about sexuality and intimate relationships,” Cherry said. “We are getting comfortable with talking about intimate issues with patients.”

What to Do

Cherry hopes the book serves as a comprehensive resource to help high-risk women make a well-informed decision.

Assessing a woman’s risk for breast and ovarian cancer is a multidisciplinary approach at Fox Chase Cancer Center’s Family Risk Assessment Program. Nurses and genetic counselors work with patients to define their risk and interventions for prevention and early detection. They provide a number of services, including education, counseling and genetic testing to assess risk.

If the stakes are high genetically, patients can opt for ovary removal to significantly, but not completely, reduce their risk. “Ovarian cancer is a tricky disease for screening,” Cherry said. The CA125 blood test and transvaginal ultrasound are the only available tests but aren’t reliable in detecting the disease, she said. “A lot of women have either a strong family history or are known to carry a genetic mutation that puts them at risk. We do everything we can.”

A lot of patients consider the option to remove healthy ovaries. To some, this decision is an easy one. They may already be experiencing menopause and have had their children. But for many others, it is far more complicated, given that removing ovaries onsets menopause, may lower libido function and, obviously, nixes pregnancy.

“When premenopausal women in their 30s and 40s choose the surgery, it puts them into an abrupt surgical menopause with all the symptoms that go along with it. There are issues with hot flashes with mood swings, loss of libido, vaginal dryness.”

All of this information is included in the book.

Linking Resources

From Cherry’s research, the book is the only one of its kind in the U.S. In the fall, Fox Chase had 2,000 copies published, sponsored by the Sandy Rollman Ovarian Cancer Foundation Inc. in Philadelphia. Now the book is in its second printing, sponsored by the National Ovarian Cancer Coalition, Philadelphia Chapter.

 Cherry will take the book abroad to the International Society of Nurses in Genetics conference this spring in England, where she is co-presenting with an Australian researcher who developed a similar tool.

In the meantime, she is gathering evaluations from other healthcare professionals, including genetic counselors. “The feedback has been positive,” she said. “For the women who need it, it provides something that wasn’t available before.”