Jill was 39 in July 2010 when she was diagnosed with stage 2 breast cancer. Her longtime boyfriend had felt a lump in her right breast. Two weeks later, she had a mastectomy and began chemotherapy. The shock, stress, fatigue and treatment took its toll on the relationship, and her boyfriend left.
"That's when I began to realize that breast cancer was not only threatening my life but would affect me physically, emotionally and sexually," said Jill, a library specialist in Denver who asked that her last name not be used to protect her privacy.
When someone gets a breast cancer diagnosis, intimacy and sexuality usually take a back seat to treatment and survival and often are ignored entirely, said Catherine Alfano, vice president of survivorship at the American Cancer Society. Doctors often don't talk with their patients about what to expect sexually during and after treatment, and patients can be hesitant to bring up these issues, she said.
Among the common problems that the cancer treatment can cause are decreased sex drive, arousal issues and pain when having sex, and body image issues (if there has been such surgery as a mastectomy), Alfano said. Many of these problems are treatable, but only if a patient speaks up. That way, the clinician can refer the person to specialists versed in physical or psychological therapy for cancer survivors or health specialists familiar with the useful medications and creams.
According to the National Cancer Institute, about 15.5 million cancer survivors live in the United States. Of those, 3.5 million had breast cancer.
Sharon Bober, a Dana-Farber Cancer Institute psychologist and sex therapist, said the biggest problems couples and single women face after breast cancer are the surprises that unfold sexually. She said chemotherapy and hormone suppression therapy can send women abruptly into menopause or exacerbate previous menopausal symptoms, such as vaginal dryness, pain with intercourse and stinging, burning and irritation. Many women are also surprised to discover that breasts reconstructed after a mastectomy have no sensation.
Couples, Bober said, often can benefit from working with a sex therapist trained in breast cancer issues. "It takes time and practice, especially in the face of permanent changes such as loss of sensation or body alterations," she said. "Women need to become comfortable in their bodies again."
Amber Lukaart, 35, was diagnosed in 2016 with invasive ductal carcinoma in her right breast. She had no family history of the disease and found the lump herself. She had been working at the Center for Women's Sexual Health in Grand Rapids, Michigan, helping survivors navigate their sexual issues - work that turned out to help her, too.
Her treatment was 16 rounds of chemotherapy, a partial mastectomy of her right breast, 20 rounds of radiation that left the skin on her chest raw and inflamed, and six months of a hormone blocker to protect her ovaries so she could have children in the future.
These treatments affected her sexuality and marriage. The first time she and her husband had sex after the treatments was horribly painful because of dryness. The pain, plus fear of cancer recurrence and death, put a halt to their attempt to reconnect emotionally. At the same time, the partial mastectomy and radiation left her breast looking malformed. She said she felt self-conscious and uncomfortable about it.
She turned to people she knew from her work and felt lucky to have the support.
"I understood immediately that I was in a unique position to help myself and my husband understand and communicate to each other the questions and concerns we both had about our sexual relationship," Lukaart said.
Yet even with access to sex therapists, sex counselors and treatments, Lukaart said, she still felt frustrated with the relative lack of data regarding hormone use for someone like her with estrogen-receptor-positive breast cancer - which about 80 percent of all breast cancer patients have, according to the National Cancer Institute. This type of the disease causes cancer cells to grow in response to the hormones estrogen and progesterone. Hormone treatments that are standard for dryness usually cannot be used after this time of cancer. And over-the-counter remedies didn't seem to help Lukaart.
She and the co-founder of the women's center, Nisha McKenzie, researched nonhormonal options. They came across a laser therapy that increases the thickness and elasticity of the vaginal walls. It took three sessions but eventually Lukaart said it gave her back the ability to have a sexual relationship with her husband. Three treatments cost about $3,000 and are not covered by insurance. (Lukaart's work at the center, which now provides laser treatment, allowed her to get the therapy for free.).
The FDA last summer warned that in some women the use of lasers for vaginal rejuvenation has caused burns, scarring and chronic pain and that "the safety and effectiveness of energy-based devices to perform vaginal 'rejuvenation' or cosmetic vaginal procedures has not been established." It also told manufacturers of the laser to avoid marketing the lasers for such procedures.
McKenzie and Lukaart say they carefully educate each patient regarding the FDA statement and the procedure's potential risks and benefits. McKenzie said these types of treatment warrant a thorough discussion with a trusted medical provider.
McKenzie said several organizations can provide the names of experts who can help, including the American Association of Sexuality Educators, Counselors and Therapists and the International Society for the Study of Women's Sexual Health.
"Women need to know," said Lukaart, "that they have to advocate for themselves and that it's OK to want more than just to survive cancer - it's ok to thrive, too."
In Jill's case, after exhausting the help of her oncologist and other physicians, she joined a clinical study run by Kristen Carpenter, director of Women's Behavioral Health at Ohio State University, that looks at ways of improving sexual and emotional health after breast cancer.
The study of 30 women used mind-body techniques, such as progressive muscle relaxation to help with sexual intimacy, Kegel exercises to improve pelvic floor muscle tone and cognitive behavioral therapy to help them rethink negative, self-directed thoughts.
The group also had discussions about assertiveness training, communication techniques to use with partners, sexual positions, and aids that may improve comfort and pleasure.
"We laughed, cried and learned from each other's struggles and stresses in a warm and understanding environment," Jill said. "and it helped give me the tools for communicating my needs and challenges and to be aware that psychological and physiological interventions are available."
A supportive partner can ease problems too.
Betty Bezemer, 72, had been diagnosed with breast cancer at 50. Throughout her treatment, her husband kept her spirits up. The couple maintained their intimacy by discussing what was happening and continuing their habits together, such as dancing and soaking in bubble baths.
Bezemer said their relationship never suffered. And, with the help of lubricants and other remedies, they found ways to be closer sexually and otherwise.
"My husband always made me feel that he had fallen in love with my head and heart and not just my breasts," said Bezemer, who serves on the Houston board of the breast cancer organization Susan G. Komen.
"Obstacles may not be easy to overcome, but women need to understand and accept that problems of intimacy and sex will often follow breast cancer treatment," said Julie Salinger, a clinical social worker at Dana Farber. "But there are solutions, and the sooner people start to ask about them, the better, as they will only get worse by waiting."
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