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Where are the survivorship studies?

BY KATHY LATOUR
PUBLISHED FRIDAY, DECEMBER 7, 2012
The answer to the headline is that there are few. And for advocates such as Elissa Bantug, MHS, it's irritating but not surprising. Elissa, an SABCF advocate for this year's SABCS, is the program director for the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore. She is used to some clinicians' attitude that issues after treatment are not their concern their job is keeping the patient alive.

"Changing provider views on survivorship takes time. We all want what is best for our patients but sometimes delivering comprehensive care during treatment and throughout long-term survivorship is a challenge with many competing priorities such as time, space, manpower and money."

For Elissa, the issues post-treatment are very real and have been for eight years. After finding a lump in her breast when she was 21, Elissa had to search for more than eighteen months for a doctor who would order a mammogram for her. Her first diagnosis came at 23 in the midst of full time graduate school, work at the National Institutes of Health and motherhood to a toddler. Shortly after diagnosis, her marriage ended. Treatment left Elissa suffering from a variety of medical and psychological side effects including fatigue, sleep disturbances, menopausal symptoms, range of motion issues, weight gain, depression, and sexual dysfunction.

Then, almost exactly a year after she finished radiation, she had a recurrence in the same breast. She had been dating her current husband for only a few months and, as she says, "this one was a keeper."

Her focus, like many in the survivorship field, is getting more support from providers that encompass both medical and psychological care after treatment. Elissa uses the term "patient activation" and thinks it is critical that we give patients the necessary to tools to thrive after cancer. This includes providing education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, retuning back to primary care, depression and late effects such as second cancers and cardiac issues.

"You ask most women whether their oncologist brought up sexuality and they start laughing," she says. "Doctors just don't see that as their problem."

Many providers feel that if they do not have the answers to solve the problem, it is not worth bringing up. Elissa tries to encourage providers to "open up the dialogue and at least ask patients about pertinent issues that affect their quality of life. If you do not have the answer or do not feel comfortable with these discussions, find someone in your practice that can . . . we have to do more beyond the removal of disease."

Elissa thinks survivorship should be addressed at the beginning of treatment by looking at how patients can be involved.

"I don't want to wait until patients gain 20 pounds and are eating anything they want and they quit their job because they can't get off the couch," she says. "If we give patients the right tools before treatment begins, hopefully we can minimize some of the many issues cancer can create such as weight gain, sleep issues, and physical inactivity.

To help her patients Elissa has created a number of internet educations programs inckuding videos.

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