Michelle Nagel is grateful to be alive.
Diagnosed with an aggressive form of leukemia at age 49, she underwent intense chemotherapy, and a bone marrow transplant. At one point, after a drug reaction rendered her unconscious, she went into a coma and her family was told she might not survive through the night. She finally stabilized, but found her body ravaged and her sex life in tatters. "The treatment rendered me sexually dysfunctional," Michelle says. "It's upsetting. You go through all that, and then this gets taken away? Frankly, I'm pretty pissed off."
There are nearly 12 million cancer survivors living in the U.S., according to the National Cancer Institute. Many of those patients — estimates range between 40 and 100 percent depending on the type of cancer and how it's treated — suffer from some kind of sexual problem directly related to their illness.
Michelle had no idea that surviving cancer would destroy her sexual well-being. For the past year, she and her husband have been in therapy with Dr. Sharon Bober, a clinical psychologist and director of the Dana-Farber Cancer Institute's Sexual Health Program. The couple is determined to rebuild the sexual connection that was shattered after Michelle's experience with cancer. "I like to joke with my friends and say, 'I've been prescribed vibrators,'" Michelle says. "How about that?"
Bober's patients tend to show up at the survivors' clinic here at the renowned Boston cancer institute in a sort of medical limbo: they are thrilled to have beaten back cancer, but their bodies and spirits are often broken in more intimate ways. Young women diagnosed in their 20s have become infertile due to treatment-induced menopause; men can't sustain erections after prostate cancer; confused spouses long for sex but fear their cancer-plagued partners are too fragile. Even the "lucky" ones, while alive, have been cut and bloodied and shot with toxic chemicals and it's no wonder they've lost interest in sex: shame and a pervasive sense of "damaged goods" has set in. How can anyone still feel beautiful and desired after so much has been taken away?
"Sexuality is not something that's often at the top of the list when it comes to conversations about cancer and cancer treatment," says Bober. Indeed, facing up to the many ways cancer can decimate a patient's sexual well-being can be singularly painful, says Colleen Feltmate, a gynecologic oncology surgeon at Brigham & Women's Hospital and Dana-Farber. "For some it's as hard as talking about death and dying."
Back In The Saddle
Because the loss can be so tough to face, many simply give up. Antonette, who endured a mastectomy, multiple surgeries and massive chemo after being diagnosed with breast and colorectal cancer in her early 40s, says following her ordeal, the last thing she wanted was more hands touching her, even loving hands. "After so many people at the hospital doing whatever they want/need to your body, I felt like I needed to have it to myself, and didn't really want to share it with anyone else," she says. "Makes sex kind of difficult."
Michelle, too, still struggles to get back in the sexual saddle. Due to the transplant and related complications, she suffers from vaginal stenosis — a narrowing of the vaginal passageway — that makes sex uncomfortable and pleasure elusive. (She says she still can't have an orgasm.) "The best thing I have is someone to go to and talk this through with — not only a gynecologist, but a therapist who can help me deal with the physical trauma, but also the emotional trauma."
Since Bober launched the sexual health program here, it's grown to be the most comprehensive in New England and one of only a handful of such multidisciplinary centers for both men and women in the country, serving more than 200 patients a year. But it's not always easy to put sex front and center at a cancer hospital: Bober had to gently nudge the hospital's boutique manager to display some of the "personal products," like vibrators, in full view, rather then keeping them locked away in a back room. Now, amidst the wigs and scarves, sun screen and flowery mastectomy bathing suits is a shelf full of items not typically sold in hospital gift shops: Knight Rider and Blue Venus vibrators, Please Cream personal lubricant and various-sized vaginal dilators.
For Bober, this modest display of sex toys and personal products represents a huge step forward in cancer rehabilitation care. Her goal is to encourage more frank talk about how a person's sexuality truly changes after cancer, and map out a plan to navigate the emotional, mechanical and relationship obstacles. So, she might suggest new sex positions or listen compassionately to what it feels like to lose a breast. She'll elaborate on the differences between vaginal moisturizers and lubricants, refer patients to pelvic floor therapy or for hormone treatment and medical interventions. "My goal is to help patients feel pleasure once again in their bodies," Bober says. "Though it may not be in the same way as before cancer. Most couples get into a rhythm of what they do, and when that changes, they often just give up. I try to suggest other strategies for being sexual."
That Rockin' Sex Life? Gone
Another patient, Tara, didn't have cancer — but there was a good chance she'd get it. Five years ago, Tara got tested for a genetic mutation that would put her at greater risk of developing breast or ovarian cancer. She was positive for the BRCA 1 gene. This sobering finding, and a long lineage of cancer in the family (her sister, aunt, cousin and grandmother) pushed Tara toward an incredibly tough decision: in 2006 she had a oophorectomy (her ovaries surgically removed) and one year later, a double mastectomy, all in a bid to reduce her cancer risk.
"You have to understand," Tara says. "I'm a holistic health coach, I come from the land of crunchy granola — I lived at Kripalu for five years. I'm all about green smoothies and whole-person health. Walking into the medical model was a big 'Whoa' for me. It was not an easy decision. At the time I had a three and a six-year-old — I wanted to have more, but I decided I'd rather be there for the kids I already had."
From the beginning, Tara said, she kept asking her doctors how the surgeries would affect her sexually. "I had a rockin' sex life," she said, "and had just gotten back into it after kids, and i didn't want to lose it."
One of the best predictors of a patient's post-cancer, post-surgery sex life is how good things were before cancer, studies show. But even for people like Tara, nothing is certain. Because sex and desire are such a complex combination of physical, mental, emotional and interpersonal forces, getting back into a sexual groove after the blunt trauma of cancer is rarely easy.
Tara went into menopause overnight, for instance, suffering from night sweats, hot flashes and vaginal dryness. "I felt a little low libido, I had a disconnect with my body." She complained about her symptoms for about a year. Finally, she told her oncologist: "'This isn't working. It's not OK that my sex life is now mediocre." The oncologist sent her to Bober.
After only two visits, Tara says, her life turned around. Their therapy focused on several key points:
1. Face The Loss
Tara said it was important to spend time grieving for what she'd lost — facing up to the harsh reality of no longer having her breasts and ovaries.
2. The Train Is Leaving The Station
Sex had definitely changed, and Tara had to figure out the new wiring in her body, she said. It almost felt like new pleasure pathways had to be established to replace the old ones that had disappeared. Her sex analogy: "I was used to getting on the train at this station, going to the next station and the next, and finally ending up at the terminal. It always worked that way. But after the surgery, it was like I'd get on the train and suddenly, the tracks are gone. So how do I get to the terminal? I'm derailed."
3. Don't Give Up
At one point, Tara said, she felt having an orgasm was becoming "an epic journey" and fretted that her husband would bail out. I said, 'I give up. And Sharon said: 'I don't think your husband is twiddling his thumbs and thinking, 'This is taking too long, I'd rather be doing the dishes. He's having fun, this is your thing.' And when I asked, he said: 'I'm game for anything.' He didn't give up the vision of our relationship," Tara said. "His line was: 'We're not siblings, we're not roomates, we're married.'"
4. You're Going To Be Fine
Bober worked with Tara on specific problems, and sought the most effective solutions. She suggested hormones, but also, "pulled out the sex toys and said get your groove on first, make sure you can get pleasure, when you've mastered your own domain, then you can feel confident about bringing it back to the relationship," Tara said. "Really, one of the most powerful things she did was to say: 'You're going to be fine. This is going to work out.'"
Not A 15-Minute Chat
One problem is that while we live a culture overloaded with sexual imagery, we still don't speak openly about sex, and how it really unfolds between people. In the context of cancer, the impulse to avoid candid discussions about sexual problems is even more powerful.
"While people are getting treated and even in the short term, the focus is on being able to beat the cancer," says Dr. Feltmate, the gynecological cancer surgeon, who says she tries to raise issues of sex with patients as early as possible, though many of her colleagues do not. "Since the sexual part is tied up with so much other stuff, these are problems that can't be solved in a 15-minute revisit. When you're the surgeon or the medical oncologist, trying to deal with the sexual function part is difficult, and that's not the priority of your practice."
Antonette said not a single one of her doctors ever mentioned sex after cancer throughout her many surgeries and treatments. She told me this story by email:
I was having a PET CT awhile back, and the tech was a relatively young woman with a strong local accent. I think she was from Revere. She was friendly and definitely street smart.
I had to remove my bra; I think I had on a gown.
After the exam, the tech noticed that I had only one breast and an ostomy bag, so she started asking questions:
"When did all this happen to you?"
I shared the brief summary of my journey.
"Does he want to have sex with you?"
"Do you want to have sex with him?"
"I don't know."
Then she starts in.
"Look, you are young. You have a hot body, except for those two things. And you have a man who wants to have sex with you. Go for it. Find a cute t-shirt, cut it off around the sleeves and the neck, make sure it covers the boob and the bag. And do it. Because he'll find someone else to have sex with otherwise."
I loved how direct she was, how clear she was about her values and the way she sees the world. I also found it interesting that through all this, no doctor talked with me about sex (other than to say that it was fine to have sex), but she did, and so frankly.
Use It Or Lose It
For Michelle Nagel, losing the sex life she once had remains deeply troubling. She's been cancer-free since March of 2009, but wonders if she'll ever regain the close physical bond she had with her husband — a European chef whom she danced with at a Christmas party in 1981, and who proposed three weeks later.
Now, with their romantic lives so fraught, Michelle even told her husband that if he felt the need to have an affair, it would be all right. "I said if you meet someone, somewhere, it's OK — just please practice safe sex," she said. "I feel strongly that sex is very, very important to a person's well being — what food is to the body, sex is to the soul."
Michelle's husband seems to be sticking with her, though, and together they're muddling through therapy, and the very unsexy feelings of guilt, anger and heart-breaking disappointment that come with it. "Sharon recommended I use a vibrator regularly," Michelle says. "It's the old adage, if you don't use it, you lose it."
(A 2011 Favorite)
This program aired on May 11, 2011. The audio for this program is not available.