Online forum supports women with gynecological cancers

May 20, 2015

CALGARY — Women in Alberta recovering from gynecological cancers can now discuss their concerns, securely and anonymously, as part of an online support group that’s being evaluated by researchers.

The 12-week, professionally moderated forum is part of a study led by Alberta Health Services researchers in Calgary and Edmonton. Women can learn about how treatment can affect them sexually and how to manage these changes. They are able to post questions, messages or comments, and interact with others in the same situation.

“Women often have concerns about the effects of cancer treatment on their body image and sexuality,” says Dr. John Robinson, a psychologist with the Tom Baker Cancer Centre’s Department of Psychosocial & Rehabilitation Oncology.

“The online support group provides a safe place where women can find answers to some of these questions and connect with others going through the same things,” says Dr. Robinson, also the principal investigator for the Alberta arm of the multi-site study.

For many years, online support groups have been available to different patient populations but their effectiveness in helping women with gynecological cancers has not been well studied, particularly where the focus is on recovering sexually.

“Women who live outside the larger centres and who may find it difficult to access specialized resources would likely find the online group beneficial,” says Dr. Ericka Wiebe, a co-investigator in the study and an oncologist at Edmonton’s Cross Cancer Institute.

“Even for women who live in the city, it may be more appealing to access a support group from the comfort and privacy of their own home.”

Intimate relationships and self-esteem often suffer in the aftermath of gynecologic cancers. Researchers hope that with the support of other survivors and guidance of professionals, women will see an improvement in their quality of life.

Gynecological cancers include cervical, ovarian, uterine, vaginal and vulvar. Uterine and ovarian cancers are the most common cancers in women, after breast, lung and bowel cancer. Treatment may involve surgery, chemotherapy and/or radiation.

To be eligible for the study, women must have completed their cancer treatment between three months to five years ago.

Once enrolled, women can access the support group at any time of the day for 12 weeks. The website is password protected and only open to women in the study, who can choose whether to use their real name or a pseudonym.

One, 90-minute chat session with two oncologists will also be scheduled during the 12-week program.

Alberta researchers are looking for about 80 women to participate in the study, which is also underway in Ontario, B.C., and New York. In total, 520 women will take part.

The website is hosted by Women’s College Hospital in Toronto and funded by the Canadian Institutes of Health Research and Ovarian Cancer Canada.

For more information on the Gynecological Cancer Study, phone 1-888-998-8148 or email Yvonne.Brandelli@albertahealthservices.ca. A physician referral is not required and those interested in participating are encouraged to contact the study co-ordinators.

Alberta Health Services is the provincial health authority responsible for planning and delivering health supports and services for more than four million adults and children living in Alberta. Its mission is to provide a patient-focused, quality health system that is accessible and sustainable for all Albertans.

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