- There are 13.7 million cancer survivors living in the United States
- Survivors face many debilitating long-term effects, including on their sexuality
- Radiation, chemotherapy, hormone therapy and surgery can affect sexual function
- Survivors also experience emotional issues such as low self-confidence, depression
Michelle was prepared for chemotherapy. She was prepared to lose her hair and deal with extreme nausea and be hospitalized for months at a time.
She was even prepared to die -- knowing, with her aggressive form of leukemia, that death was a very real possibility.
But when death didn't come, Michelle was officially labeled a cancer survivor. And she wasn't at all prepared for what came next.
Treatment forced the mother of two through menopause, leaving her hormones reeling. Stress and self-doubt created problems with her husband of 24 years.
She also suffered from vaginal stenosis, a narrowing of the vaginal passage so severe that intercourse was impossible. As her primary care physician explained, she was basically a BAV: born again virgin.
"I was 49 when I was diagnosed, 50 when I received my (bone marrow) transplant," said Michelle, who asked not to be identified by her full name due to the personal details she's revealing. "I wasn't ready to give up on a very important part of my well-being -- that being my sexuality."
There are 13.7 million cancer survivors living in the United States; the American Cancer Society estimates there will be 18 million by 2022. Survivors face many long-term effects of treatment, from secondary cancers to cardiovascular problems to cognitive defects. But the debilitating effects on a patient's sexuality are often ignored, said Sharon Bober, director of the sexual health program at the Dana-Farber Cancer Institute in Boston.
Bober's program is one of a handful of sexuality-focused survivorship programs that have popped up at cancer centers around the country. Bober was inspired to start the program when she realized many of her patients -- adult survivors of pediatric cancers -- were struggling with sexual issues and had no idea where to go for help.
Radiation, chemotherapy, hormone therapy and surgery all have the capacity to affect sexual function significantly, Bober said.
In one study, young breast cancer survivors reported skin sensitivity, vaginal dryness, genital pain, premature menopause, fertility issues and extreme fatigue. Their scores on a sexual health test were also lower than the general population's, indicating problems with sexual desire, arousal, attaining orgasm and relationship satisfaction.
These symptoms are common for cancer patients, Bober said. Men face many of the same issues in addition to erectile dysfunction.
The side effects don't stop when treatment stops. Bober and her colleagues recently completed a study of 200 young adult cancer survivors; a significant number of them talked about long-term sexual problems years after their therapies were complete.
Imagine dealing with all the normal teenage development changes on top of dealing with cancer. Many pediatric cancer survivors feel uncomfortable even dating, Bober said.
Adult cancer survivors can also be apprehensive about the bedroom: Hormonal changes from chemotherapy and radiation often lower a patient's sex drive. And many face self-confidence issues post-treatment.
Right next to the wigs and prosthetics in Dana-Farber's patient store are vibrators and lubricants, which Bober said helps normalize the "personal products" she advocates using. Bober works with a team of doctors to provide whatever services her patients need, whether it's couples therapy or education on vaginal health after early menopause.
Bober's program helped Michelle understand what had happened to her sexuality -- both physically and mentally. "She not only provided us with the emotional tools to overcome the changes we experienced, she also encouraged me to use 'tools' to help my body get its groove back," Michelle said.
"I will often joke that I never expected vibrators to be prescribed. But they were absolutely necessary."
Behind closed doors
Most of Bober's patients are simply gratef