Illustration by Kimberly Carney / Fred Hutch News Service
Editor's note: This is the first of a two-part series on the sexual aftermath of cancer treatment. Click here to read Part 2 with expert tips from nurse practitioner Leslie Heron and others. If you missed our Aug. 4 Twitter chat about “Sex After Cancer,” click here for the Storify version.
Sex was the furthest thing from my mind when a breast cancer surgeon told me I needed a double mastectomy five years ago.
Maybe it shouldn’t have been.
No matter what kind of cancer you have, the surgery and treatment you go through will have a profound effect on all aspects of your life, including your sex life. From changes in body image to erectile dysfunction to excised bits and pieces, things just don’t quite work the same for many after a cancer diagnosis. But for whatever reason, most of us talk about the mechanics of sex about as readily as we talk about the mechanics of other normal, healthy functions like, say, pooping.
My doctors didn’t bring it up, so neither did I.
Photo by Robert Hood / Fred Hutch News Service
Luckily, I’d reached out to other patients so I had an inkling of what was to come. I knew that even a nipple-sparing mastectomy would eliminate two key players on the team, leaving my chest a dead zone — no nerves, no feeling, nothing. But not all breast cancer patients know this going in. I still hear horror stories about women who have mastectomies then turn to their doctors in puzzlement when their skin and/or nipples remain numb.
Losing my breasts and sensation was just the beginning. Chemo, radiation and tamoxifen pretty much neutered me, tamping down that sweet little flame of desire that flickers within us all. I’m sure my oncologist went through all the potential side effects before I started treatment, but all I heard was hair loss, nausea and radiation burns.
Hair grows back, though. Libidos, not so much.
The sad truth is along with saving your life (knock wood), cancer treatment can squelch your libido, make sex painful (or impossible), mess with your ability to orgasm and even render your private parts numb — and that goes for both men and women. It’s not a given and it’s all a matter of degrees, but it happens. A lot.
Chemo and radiation can wreak havoc with the soft, deliciously sensitive parts of your body, damaging the mucous membranes in your mouth, nose, eyes, ears, and yes, vagina, penis and anus. Radiation can also burn your skin, fry your ovaries and sperm and turn soft, sensitive tissue thick and tough. Anti-hormone treatments, the bane of breast and prostate cancer patients, put a kibosh on intimacy in about 17 different ways — even cuddling is out when hot flashes make people feel like they’re going to spontaneously combust. And all three reduce blood flow, which keeps our private bits plump and moist and, well, sensational — the very stuff of sex. Without it, these delicate tissues atrophy.
Cancer cuts us to our sexual quick. Men may struggle with impotence, women may lose their natural lubrication and most everybody’s joy button is off, thanks to the physiological, emotional and/or psychological changes wrought by diagnosis and treatment. It’s hard to feel sexy when you’re suddenly wearing surgical drains or a colostomy bag or your prostate meds have given you man boobs. And then there’s that whole death thing.
But it’s not just patients with prostate or colon or other below-the-belt cancers who suffer. Anyone who’s been through cancer treatment can experience a sexual sea change, even those who’ve gone through treatment for leukemia as kids.
And surprise! Nobody wants to talk about it: not doctors, not patients, not even their partners. Sex after cancer has become the elephant in the bedroom.
Fred Hutch file photo
A common side effect of treatment
This year alone, an estimated 1.7 million people will be newly diagnosed with cancer and, according to one study, half of those with pelvic cancers and a quarter of those with everything else will have something go haywire in bed, some more than others.
“It depends on the diagnosis and type of treatment,” said Dr. Karen Syrjala, co-director of Fred Hutchinson Cancer Research Center’s Survivorship Program, “but in prostate cancer we see sexual dysfunction in over 90 percent of men and in women with breast cancer or bone marrow transplants, we see rates that are around 70 percent.”
All cancer treatment zaps your energy, though, and most messes with your hormones — at least temporarily. The result? You guessed it.
The good news for survivors? We’re going to live for years — maybe even decades — after treatment. The bad news? Key parts of our sexual anatomy — our sexual selves — may be broken or missing and that’s tough to talk about and deal with. Most patients wait for their doctors to bring up the whole sex thing but doctors are often too uncomfortable — or too pressed for time — to do so. In a 2010 Livestrong report, 43 percent of the 3,000-plus cancer patients surveyed had physical problems related to sexual functioning and only 13 percent got help for them.
“Survivors may live five to 50 years after treatment,” said Syrjala. “Certainly young adult survivors will live the vast majority of their lives with these consequences. That’s a long time to live with sexual dysfunction. It’s inexcusable to not be addressing the needs of these people.”
Talking about sex
But the inexcusable happens. In a recent blog post on the website I Had Cancer, one patient, writing anonymously, said when she brought up lack of libido with her doctors and nurses, they just gave her “a blank stare, like this was another thing I just had to accept.”
Any topic that smacks of sex does seem to be almost taboo for many doctors, maybe because they don’t know what to say.
Fred Hutch file photo
I remember my oncologist telling me about hair loss, but did she mention my pubic hair would also fall out? Nope. She also brought up hot flashes when I started tamoxifen, but she didn’t say that as soon as I started taking the estrogen-blocking drug, I’d feel like my sexual antenna had been snapped off. If men were putting out signals, I was no longer able to read them; it was like everyone was suddenly speaking a language I’d somehow forgotten. Granted, I was headed in that direction anyway, but there’s a big difference between easing into menopause and hitting it like a brick wall at 60 miles an hour. Just ask any 20-something woman who’s gone through oophorectomy and within days is rocking night sweats, vaginal dryness and the sex drive of a 75-year-old.
Understandably, not having a libido and all my bits and pieces has made dating challenging, but I’ve been single most of my life and happen to really like Netflix. And composing music. And exercising. And working constantly. Sublimation can be a wonderful thing. For a time.
But what about patients who are married? Or in their sexual prime? (Remember, cancer touches young and old alike.) What’s their experience?
A quick survey on the private Facebook group Beyond the Pink Moon prompted a slew of anecdotes from breast and ovarian cancer patients. While some received great proactive care or had few side effects, many more talked of dismissive doctors, flummoxed partners and their frustration over a new normal that was surprisingly asexual.
One patient, thrown into “chemopause” when she started treatment at age 39, put it this way: “I’d only been married for two years when suddenly I was post-menopausal, fat, bald, had a dented boob, no libido and a painful vagina. It really sucks for everyone. I wish people talked about this more! My doctor didn’t tell me about [anything].”
Dr. Gary Lyman, a breast cancer oncologist with Fred Hutch’s treatment arm Seattle Cancer Care Alliance, said despite the discomfort it causes doctors and patients, discussing the effect of cancer and treatment on patients’ sex lives is extremely important. And not bringing it up, is “remiss.”
“Any chemo regimen can lead to problems and the physician has to understand that this is something patients may be reluctant to bring up,” said Lyman. “It can have a fairly profound impact on their quality of life. I think it’s a shared responsibility but as a provider, it should be on your checklist.”
A board member of the American Society of Clinical Oncology, or ASCO, Lyman recently helped write two sets of survivorship guidelines, both of which touched on sexual side effects. New guidelines from the National Comprehensive Cancer Network to which Syrjala contributes also provide good guidance, as do many survivorship programs around the country, including the one at Seattle Cancer Care Alliance.
As for doctors who downplay the damage, dismiss concerns or don’t have the skillset to respond to their patients’ inherent needs, both Lyman and Syrjala made it clear those physicians are not serving their patients.
“Not owning it doesn’t help at all,” said Lyman. “In fact, it discourages the conversation and discourages patients talking about it even further.”
Fred Hutch file photo
But doctors aren’t the only ones who don’t talk about cancer’s sexual aftermath. Patients and their partners often don’t discuss it either.
“None of us are taught how to actually have a conversation about sex,” said Leslie Heron, a nurse practitioner with the SCCA’s Survivorship Clinic, which helps patients deal with all the collateral damage of cancer treatment. “And we’re also not great in our culture about getting help.”
Heron said couples often try to get things rolling after recovery but soon run into trouble — he’ll lose his erection, she’ll have pain — and they won’t know how to talk about it. They may try a few more times, but if the same old-same old doesn’t work and they’re not sure how to fix it, sex starts to get awkward and they give up.
“A lot of times, I hear that they haven’t tried for a very long time because neither one of them wants to bring it up,” she said.
Another big issue: partners often act as caregivers and, once treatment is over, have trouble leaving that role.
“Sometimes there’s just no intimacy anymore,” said Heron. “Patients and their partners get into more of a caregiver-patient role instead of being in a lover-partner role. They may have this preconceived notion that ‘Anything I touch will hurt you’ or ‘Anything you touch will hurt me.’”
And this happens with couples in their 30s and couples in their 70s, with mixed-gender couples and with same-gender couples.
“Bodies are bodies,” she said.
Advocating for openness
Michele Longabaugh, of Wichita, Kansas, had just turned 47 in the spring of 2010 when she learned — on her birthday, no less — that she had stage 4 anal cancer. The cardiology nurse, now 53, went through surgery, chemo and seven weeks of pelvic radiation, and was free of disease for two years. But it came back in the fall of 2012 and she had to sign on for more treatment. Currently NED (no evidence of disease), she divides her time between her work, her family (she’s been married 29 years and has three grown children) and writing about the harsh realities of life with a stigmatized cancer such as hers so others “don’t feel so alone.”
Photo courtesy of Michele Longabaugh
One of her biggest realities: finding help for the sexual side effects of her treatment.
“Radiation is pretty brutal to your girl parts,” she said, rattling off a laundry list of side effects and complications including urinary and bowel incontinence; chronic urinary tract infections; chronic lower body weakness; tightening of the pelvic muscles and vaginismus, a spasmodic contraction of the vagina. Think charley horse in your hoo-ha every time you try to have sex.
“This is more than just a body part missing,” she said. “This has changed my life. I had a very healthy sex life prior to cancer. My husband and I are very much in love. But post-treatment, I had to say, ‘My sex life sucks and I want it back.’ And I had to go back and say it again and again. Six years later, I’m still complaining.”
A native of upstate New York, Longabaugh’s East Coast straightforwardness and sense of humor — she tweets at @crazyasscancer and blogs at www.IHaveButtWhat.tumblr.com — have served her well in the conservative Midwest, where she was treated.
“I had to be so crazy proactive,” she said. “When the doctor said, ‘Is there anything missing?’ I said, ‘Hey, I can’t do the dirty, buddy.’ [He] just looked at me and I said, ‘The dirty. It hurts. The door won’t open.’ Then he sent his nurse in.”
The nurse recommended dilators — a set of Russian nesting doll-type dildos — as well as topical estrogen cream, which helped to some extent. Longabaugh has also tried pelvic floor physical therapy for her vaginismus and uses a numbing cream to help re-acclimate her exceedingly tender tissues to sex.
But she believes more could have been done to prevent the damage in the first place. Some treatment centers, she said, instruct patients to use dilators during pelvic radiation to stave off damage. But like young women who go through chemo then learn of its toxic effect on fertility afterward, Longabaugh didn’t know this until her radiation ended.
She also believes things would be better if doctors treated stage 4 patients as if they’ll be around forever.
“I’m not being critical — they’re there to save your life. But I wish they would have treated me like I was going to survive,” she said. “As we move forward, quality of life is becoming more important. It’s not just that you saved me and I should be grateful — I am grateful — but there’s so much more to life than waking up every day and breathing. You have to address the hierarchy of needs and guess what, sex is on there.”
Photo courtesy of Jon Dibblee
There is good news. Social media, online communities, tweetchats, blogs and private Facebook groups offer plenty of places where patients can swap stories and learn about solutions — and there are tips, tools and treatments that can help. Survivorship guidelines now fold sex into the mix, arming primary care physicians and oncologists with news they can use. Less-invasive treatments like immunotherapy are starting to be used with more coming down the pike. And programs like Will2Love, Livestrong, Prostate UK, Living Beyond Breast Cancer and more are doing their best to fill the needs of patients and survivors. As is research.
According to Syrjala, patients are much more willing to discuss sexual dysfunction than they were 20 years ago, making it easier for clinical researchers like her to glean data and devise solutions.
“The voices are loud and clear,” she said. “It’s now considered an essential part of quality of life. We can’t promise people that everything will be like it used to be, but people can adapt and have sexual intimacy and satisfaction even when they have physical changes that may not be entirely reversible.”
Jon Dibblee, 59, of Merced, California, is one of those adaptable people.
A retired history teacher, Dibblee has been dealing with cancer since he was a young man. He’s lost both his testicles and had about 30 lymph nodes removed via a surgical procedure known as retroperitoneal lymph node dissection, or RPLND. Currently, he’s on his third chemo protocol for recurrence. But he and his wife of 34 years still have a meaningful sex life, he said, thanks to testosterone replacement therapy and their strong love for each other.
“It’s the intimacy,” he said. “To me, that’s the best part of the whole thing. I’ve accepted who I am and my lesser ability to do certain things. But the intimacy, the ‘I love you no matter what.’ That’s the meaningful part. Surgery and things haven’t changed that.”
I hope I’m one of those adaptable people, too. Surgery and treatment have changed many things for me, and I’ve definitely tapped my providers for their medical expertise. I just haven’t had a ton of opportunity to put their advice to good use. Surgical garments aren’t a good dating look and I’m not that far out from reconstruction. Plus dating after cancer is daunting. There’s just so much “cancersplaining” that needs to be done.
I’ve tried to get out there a bit, though, and while much has changed, it would appear a few embers are still smoldering away. Guess it’s time for me to stop working so much and fan the flames.
Read "’Your Cancer Sex Rx," part 2 of our series on the sexual aftermath of cancer treatment with tips from nurse practitioner Leslie Heron and others.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com.
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