Dr. Nathalie McKenzie was 30 years old and a newlywed when she was diagnosed with breast cancer and had a double mastectomy.
"All of a sudden I didn't have breasts anymore," said McKenzie, a gynecologic-oncology surgeon at University of Florida Health Cancer Center at Orlando Health.
"Here I am, physically, obviously disfigured. I don't feel like putting on a sexy nightgown even as a newlywed and prancing around my new husband." McKenzie didn't bring up her concerns with her oncologist. She felt timid and thought of him as a father figure. And when she talked about it with a gynecologist friend, the friend expressed surprise that McKenzie was even thinking about sex while going through cancer treatment.
Though cancer therapies have improved dramatically in the past few decades, gaps remain in addressing long-term medical and psychological effects of cancer and its treatments among survivors. Intimacy and sexual function are among the least discussed issues in cancer care, experts say, and it could have a significant impact on the survivors' quality of life after cancer.
"I think that it's a big issue for both men and women," said Jan Perun, a nurse practitioner who helps oversee the Breast Cancer Survivorship Clinic at UF Health Cancer Center.
It's difficult to point a finger at any particular part of the patient-provider equation for this shortfall. While oncologists and primary-care providers are busy with the medical side of cancer, patients are many times hesitant to bring up the issue -- as McKenzie was -- because they're either shy or think that the topic pales in comparison to having cancer.
"Sex is a big part of life, and if it's not, it's not, but most of us agree that it's a big part of life, and therefore we should talk about it," said McKenzie, who is now 41 and has two children. "And if we don't feel comfortable talking about it, that's OK, but we should have handy resources to provide to our patients to talk about it."
In 2013, the National Cancer Institute and the American Cancer Society, two of the leading cancer organizations in the country, asked more than 2,000 primary-care doctors and medical oncologists about how they saw their roles in providing follow-up care for cancer survivors.
"And when it came to sex, both oncologists and primary-care providers said, 'That's not me. That's not my role.' So that, right, there tells you we have a problem," said Catherine Alfano, vice president of survivorship at American Cancer Society.
Breast cancer and prostate cancer are the most common types of cancers among women and men, respectively, followed by colon and rectal cancer in men and uterine cancer in women.
These cancers are closely tied to sexual function and body image, but it's not clear how often the topic comes up during or after treatment, or how many patients don't seek help.
Dr. Jamin Brahmbhatt, a urologist at Personalized Urology & Robotics at South Lake Hospital in Florida, said men tend to be more forthcoming about their concerns, but even if they're not, "if they have a biopsy, before results come back, we start having the conversation about treatment options. The biggest issue is when patients don't know what is going to happen."
Dr. Michael Rothenberg, a clinical sexologist in Winter Park, Florida, regularly counsels couples who seek help because of intimacy issues related to cancer. "What I tell people is that sex is a form of communication. And what I do in the office is help people develop a dialogue," he said. "It's helping them to understand that what once worked for them and the things they did before may not work now. It's about changing your mindset. You can add things to the plate," said Rothenberg, whose national and international lectures on sex after cancer are usually packed.
Jackie, who didn't want to be identified to protect her partner's identity, said her fiance waited for her for more than a year to be sexually intimate again.
After a cancer diagnosis, she had a hysterectomy followed by radiation.
She was hesitant even after she was given a green light to have sex. "I'm not the same person that he met a few years ago. I've gained weight. I feel like I've aged. I've lost my muscle tone. It's taken a toll on me. But he called me beautiful all the time." And her gynecologic oncologist discussed intimacy issues with her during treatment. "She said, 'You are going to be fine.' She said, 'Go out, have sex, enjoy life.' And she was right."