Sex After Cancer: How To Get Your Groove Back

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.

Vibrators and Lube: Not your typical hospital boutique items

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.

“You married?”
“Yes.”

“Does he want to have sex with you?”
“Yes.”

“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.”

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  • Michelle Nagel

    Dear Victim, I’m the Michelle in the article. I’m so sorry that you’re so sad and angry, but you have every right to be that and more.
    There is probably nothing that I or anyone else could say or do to help you heal, but please know there are doctors out there, such as Dr. Bober, who can help.
    I understand your anger toward the doctors, for not giving you any warning about this aspect of the side effects of treatment. I’d had to wrangle with that too. I accepted that Drs are most concerned with their first priority which is to save your life. I too had wished that even some of the reading material concerning my disease, would have given me a warning of some sort, that my sexual well being would be devastated. Instead, I was devastated with/by the rude awakening.
    I too suffered much grief, anger and sadness having lost my sexuality. Is it now, 5 yrs after diagnosis, back to normal. No! Has it gotten better than it has been since treatment began? Yes, but ever so slowly. And just as I’ve changed physically and emotionally, so has my sexuality. Am I hopeful, yes. Because I’ve had a medical team who helped give me “the tools” to deal with the anguish and help me to, indeed-get “back in the saddle again”.
    Please don’t give up hope.
    It took me 4 yrs after my diagnosis and 3 yrs after and out of active treatment, for me to experience an orgasm. Its like training for a marathon. Lots of work, little baby steps got me to this point. Now that I’ve reached orgasm again, am I done with “training”? Hell, no! Am I willing to accept the lesser quality of the sexual experience? Do I have a choice? I accept it for what it is, and am grateful that I have anything at all.
    Sending you a very big hug.

  • Amy

     I understand how you feel, and I am sorry you cannot see the rest of us
    who support you and know your story too well.  So far it is almost a
    year of my breast cancer experience — first, a bad health plan with
    chemo that almost killed me, then enormous out of pocket expenses until
    my better health plan with better doctors kicked in, then the mastectomy
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    • Michelle Nagel

      Dear Amy, I’m the Michelle in the article.  I feel your pain. 
      I’m grateful that I had a therapist like Dr. Bober, who helped not only me “get my head around” the changes that occured to my sexuality during and after treatment, but she also treated my husband and I together. 
      I too, wanted so desperately to connect with my husband intimately, but he wouldn’t respond.  I was crushed.  Connecting with him sexually was a part of what I needed so badly to heal, emotionally.  And I thought maybe he needed that too.  I often wondered if he now thought of me as a fragile victim and no longer as a sexual being.  I was terribly sad.  There is a Luke Bryan song that came out at the time that I was struggling with this issue called “Do I?”.  ( You Tube it, and you’ll understand how appropriate it is. ) It posed the question that I asked my husband.
      If you and/ or your husband could get some therapeutic help, I’d highly recommend it.  If your treatment center doesn’t have anyone like Dr Bober, try to contact Dana Farber, to ask her if she could recommend how to find someone who might help. 
      Sending a big hug,

  • Kelley

    Thank you for this, which I’m just seeing now. After radiation for a brain tumor, my sex drive was nonexistent for months. And my long-term partner is a woman, which intentionally or not, seemed to make doctors even less likely to talk about the sexual side effects of treatment. I’m happy to say that after a year, things are a lot better, but it was pretty rough for awhile on both of us. 

  • Victim

    I had breast cancer when I was 39.  Lumpectomy, chemo, radiation, and Herceptin.  I refused to take Tamoxifen, for fear of all the ugly physical changes it is known to cause.  As it turned out, it wouldn’t have mattered.  My body was already permanently ruined and my sex life along with it.  Not one single docotor ever mentioned sex either before or after any kind of treatment inflicted upon me.  Had they warned me of the outcome, I would have said ‘no thank you’ to any treatment or surgery.  I think many docotrs are afraid of telling people the truth about cancer’s aftermath because  they think people will decline cancer treatment if they actually know what will happen.  I certainly would have.  And, contrary to the patronizing assumptions of all those doctors, I never did change my mind.  I am NOT grateful or happy to be alive with my sexuality utterly destroyed.  This is not an acceptable outcome.  It isn’t even a worth while outcome.  Yes, I would have chosen to die, and have spent the 7 years since wishing for death.  The ability to make an INFORMED decision about any treatment or surgery was taken from me when signifigant facts were simply withheld, presumably for ‘my own good’.  I hate living inside my body, now.  It’s nothing but garbage to me.  7 years of therapy, and anti-depressant medication have done nothing to change that.  The medical community is unwilling to accept the fact that some people really would choose death, and I am one of those people.  The next time I find something disgusting wrong with my body, I will keep the fact to myself, and just let it kill me, which is what I should have done in the first place.

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  • Ward Cheney

    I was diagnosed with prostate cancer last year and had a radical prostatectomy in the fall. I’m married. Very early on it was clear that we, my wife and I, had prostate cancer. I’m very grateful for the medical support I/we received along the way.  My experience, our experience, with doctors, nurses, technicians, front desk people, and hospital staff — all the staff — was overwhelmingly positive. Even those healthcare providers with whom we consulted and whose treatment options we eventually decided not to pursue. And I can’t say enough about the importance and value of friends . . . their help was and is so appreciated. A number of them were and are still dealing themselves with their own forms of cancer. They provided a lot of information, names of people to contact, and strong, basic emotional support.

    I know what my experience has been sexually, our experience, and I now imagine that anyone who gets this diagnosis, and whatever treatment that follows, even “watchful waiting,” will be affected sexually. Not, of course, all in the same way, but I’ll venture that 100% of individuals and couples dealing with prostate cancer have had or will have sexual issues to deal with. Some will be physical, some emotional, and all sort of combinations. Not necessarily devastating . . . but things are different now for me and for us, no way around it.

    I appreciate the comments about the non-cancer spouse and the impact she/he has to deal with. It’s natural that a lot of attention gets heaped on the person with cancer, but the partner is just as caught up in the cancer and the sexual repercussions.

    I highly recommend checking out The New York Times online and a blog there on prostate cancer and sexuality. When I last checked a month or two ago there were something like 650 or more posts. Men, women, partners, healthcare people. Many positive comments but also a lot of honest, blunt frustration, confusion, disappointment.

    As someone said here, humor can wonderfully helpful. So many people messing with your naughty bits and the plain absurdity of it all, well, we just couldn’t help laughing about it. Thank goodness.

    Communication! So right, and yet not always so easy.

    And it goes without saying, and will say it anyway . . . love and patience . . . 

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  • doctor_don

    I actually counsel women about these issues.  then, april 2010,  I get the priviledge of chemo, followed by chemo and radiation, followed by surgery.  no  cancer detectable at present but the  pyschological side can be overwhelming.  even as a guy that is extremely fit and with no impotence problems,  i can sometimes find it difficult to think that i could be desireable to anyone.  thanks for the article and i’ll follow along with the blog.

  • Annie

    This is a terrific post, and so important. Thank you for raising this issue. It needs to be talked about!  

  • http://www.pleasuremyspot.com Max

    Thank you for this enlightening post. Addressing sex after cancer is an important topic, so many will benefit from this post.

  • http://twitter.com/LAlexanderson Lauren Alexanderson

    If you’re interested in talking to others who are struggling to get their post-chemo/radiation/surgery groove on, try the @stupidcancer forums: http://forums.stupidcancer.com/forumdisplay.php?15-Relationships