By Diane Mapes / Fred Hutch News Service
Editor's note: This is the second of a two-part series on the sexual aftermath of cancer treatment (read Part 1 here). If you missed our Aug. 4 Twitter chat about “Sex After Cancer,” read the archive.
Sex after cancer can be complicated.
Toxic treatment saves your skin in some ways, but totally messes with it in others. Your confidence and sex drive may disappear so fast you’ll half expect to see pictures of them on a milk carton. Your body may become terra incognita almost overnight — completely numb in some areas, hypersensitive in others. Surgery, chemo, radiation and anti-hormone therapy keep you alive, yes, but often there’s a cost: your energy, your erections, your tiny tingles and your big O.
Unfortunately, cancer treatment’s sexual toxicity has become the elephant in the bedroom — and the doctor’s office. Patients, partners and practitioners don’t always want, or even know how, to discuss it with each other.
“We don’t even talk about sex when it’s going well so how can we talk about it when it’s not?” said Leslie Heron, nurse practitioner with the Survivorship Clinic at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center.
We know it’s tough to talk about this stuff. But we also know there are ways to counteract the collateral damage and replenish and replace that which Mother Nature gave you and treatment took away. Read on for a few tips and tools — some PG-13 — to help you hack your post-cancer sex life. Herewith, your cancer sex Rx.
Doctors are no better at talking about sex and sexuality than we are, said Heron. They’re also usually completely focused on saving your life. So if you have concerns about the sexual impact of surgery and treatment and your doctor doesn’t address them, bite the bullet and bring them up yourself — with someone. If not your oncologist or surgeon or primary care physician, then a nurse or nurse practitioner or physician’s assistant.
“Let them know it’s something that’s important to you,” said Heron. “And you can do that before treatment or early on in treatment. Ask, ‘Will this affect my sexuality? Will this affect my ability to function sexually? Will this affect my sensation that I feel with intercourse?’ You will get a straight answer.”
Same goes for after treatment. If you’re unable to get an erection or have an orgasm or even think about getting naked with somebody again, mention it.
“Don’t wait for your doctor to start the conversation,” advised patient advocate Michele Longabaugh. “They may never bring it up. Find someone you’re comfortable with and talk to them. If you don’t tell them, they won’t know it’s a problem. The more people speak out about it, the more it’s going to be part of regular care.”
Survivors often have to figure out what they can and can’t do after treatment, mobility-wise, fertility-wise, and yes, intimacy-wise. Surgery and treatment can leave skin deadened in some spots and super-sensitive in others. You might not be able to twist or turn a certain way anymore; you might not want to take your shirt off because of scarred or missing breasts.
Until you know yourself what works or doesn’t work, you can’t communicate that to your partner. And communication is key (although talking about these sexual health challenges can be complicated).
Heron encourages both men and women to spend time figuring out what feels good and what doesn’t. Stroke your forearm lightly, she suggested, then a little more firmly, then deeply. Be able to describe what a light, medium or deep touch feels like to you and what parts like what.
“Touch yourself on your arm, your rib, your belly, your inner thigh, your breast, your penis and so on using a light, medium and deep touch,” she said. “Then you’ll be able to tell your partner, ‘The deep touch feels really good here, but only light touch feels good here.’”
If a certain section of your sexual territory is gone or changed, perhaps another can pinch hit. Breast cancer patients may not want a partner to touch their reconstructed (or unreconstructed) breasts, but a nuzzle on the neck might serve nicely in its stead.
Once you’ve figured out what still packs a sexual punch for you (or not), communicate that to your partner. That doesn’t mean you have to suddenly start talking like a phone sex operator, Heron said, but it does mean you have to understand each other.
“Decide what lingo you’re comfortable using,” she said. “If you want to use ‘hoo-ha’ instead of ‘vagina,’ then go for it. Just as long as everybody understands the language. So if you say, ‘I want a light touch on my hoo-ha,’ they’re not going to rub your feet.”
Heron said sometimes when sex doesn’t work the way it once did — there’s pain or tenderness or lack of response — it becomes awkward and a “dead end” for couples. If that’s the case for you and your partner, temporarily focus on intimacy rather than sex.
“Sometimes I’ll tell patients to just leave the genitals out of [it] and start with hand holding,” she said. “There are other activities that might feel good — even just holding each other, rubbing each other, being physically sexual without having intercourse.”
Co-director of Fred Hutch’s Survivorship Program Dr. Karen Syrjala also stressed the importance of nonsexual intimacy.
“Even if intercourse isn’t the same as it used to be, the idea of sexual closeness is still an extremely important human need,” she said.
What if you don’t currently have a partner?
“This is just as important when someone is going out into the dating world and meeting a new person,” said Heron. “If they’ve mapped their own body sensations and know what feels good and safe and energizing and sexy, then they can start off using that common language and requesting what they want. Then no one is going to be disappointed.”
Most patients research their disease and its treatment. Doing your homework regarding cancer’s sexual aftermath pays off, too.
Heron recommends taking a field trip to an adult toy store to check out the various products they carry, which include everything from lubes to vibrators to erection rings.
“If people have access to an adult toy store, I do recommend they go to some place like Shine [operated by Seattle Cancer Care Alliance] or Babeland in Seattle or Shebop in Portland,” she said. “There are places all over.”
Shopping online works, too, she said, and can often help to desensitize those who may not be all that familiar with the world of adult products. The downside? When you buy online, you won’t know how things feel or smell or operate and if you buy an item that doesn’t click with you, you can’t exactly return it. Going to a store in person allows you to feel the texture of a certain lubricant, see how strong a vibration might be against your skin.
“If you take a vibrator and put it on the end of your nose, you’ll be able to tell if it’s too strong,” she said. “You can’t tell that from an online picture.”
Attending a sexuality workshop is another option. Seattle’s Babeland regularly hosts workshops for cancer survivors and their partners; the next one is slated for September 11. And Heron will be speaking at the following workshops in the near future.
Sure, treatments like chemo, radiation and hormone therapy kicked your cancer to the curb, but they kicked a lot of other normal healthy functions along with it. Luckily, modern science has some tricks up its sleeve when it comes to getting you aroused, erect and ready to rock and roll.
Cancer patient Jon Dibblee, who had both of his testicles removed in two separate bouts with cancer, swears by testosterone replacement therapy, which he calls the “miracle drug” that allowed him and his wife of 34 years to maintain their sexual relationship. Viagra, Cialis and other erectile dysfunction drugs can also help, said Heron, but only if men are able to get a partial erection on their own.
“If someone can get even a glimmer of an erection, there’s a chance those meds are going to be helpful,” she said. “Then we know those blood vessels and nerves are working.”
If you have no sensation and are having trouble getting even partially erect, “a gallon of Cialis … won’t work,” said Heron. But there are workarounds. Erection rings come in handy for those whose can get, but not stay, erect. Heron recommends a ring that works a bit like a bolo tie (especially for beginners). Men who aren’t able to gain any kind of erection can also talk to their doctor about a surgical implant, she said.
“You can have an implant in the penis with a pump bulb in the scrotum,” she said. “You or a partner can inflate the penis and then de-inflate it. It requires minor surgery, but it’s very discreet. Looking at it from the outside, you’d never know.”
When it comes to increasing sexual arousal in women, Heron said Viagra and other ED drugs aren’t recommended but she said there is a “little pink pill” called Addyi on the market that has given some women good results.
Estrogen replacement products such as estrings are another viable option, but it’s crucial to talk to your oncologist or gyn-onc before you go this route. Some are fine for cancer patients; others could be harmful.
“We don’t want women with an ER-positive cancer having systemic estrogen in, say, a tablet or a patch,” said Heron. “But frequently, estrings or vaginal suppositories or creams are acceptable. The vaginal area is like an estrogen sponge. If you use a topical estrogen product like an estring or an estrogen cream, it’s incredibly unlikely you’ll find that estrogen anywhere else in the body.”
Most cancer treatment reduces blood flow to the genitalia, which in turn can cause atrophy, pain, loss of lubrication and lack of sensation.
What helps? Lubrication and stimulation.
“Use it or lose it,” said Syrjala, who’s done clinical research on the sexual side effects of treatment. “I suggest vibrators, more than just dilators, for women. I think there’s increased sexual response and perceived benefit with vibrators. People are more familiar with them.”
Dilators are useful for women who may have radiation or other damage to their vagina. They often come in a variety pack of sizes (think Russian nesting dolls) and, according to Heron, using them consistently “makes all the difference.”
Lubes and moisturizers are for everybody and aren’t just for sex (although they definitely help). Just as you moisturized your burns with special creams and ointments when you were getting blasted by daily radiation, you moisturize the delicate tissues of your genitalia in order to replenish the natural moisture that chemo, radiation and anti-hormone treatment may have leeched away. This is especially important for women, many of whom have to deal with menopause symptoms decades before they normally would have. (Fred Hutch’s MsFLASH researchers are looking at ways to help alleviate these symptoms for all women.)
Heron said there are several types of vaginal moisturizers and three basic categories of lubes. Water-based products are easy to wash off and best for those with sensitive skin. Oil-based lubes will stain your bedsheets and certain ones contain ingredients that can trigger nut allergies. Silicone-based products are more slippery, wash off only with soap and water and can’t be used with other silicone-based sex toys (they’ll bond together and become tacky because … science).
Water-based lubricants are best for newbies, said Heron (over-the-counter products like K-Y Jelly and Slippery Stuff are available at most pharmacies). Greater selection and better quality products — including organic lubes — can be found at the specialty stores mentioned earlier.
There are other tools in the toolkit, of course: antidepressants, counseling, numbing creams and good old lingerie and candlelight. Even commiserating with other cancer patients can help defuse some of the sting of a treatment-driven sexual dysfunction. As can humor.
If cancer has wreaked havoc with your sex life, know that you are not alone and that help is only as far away as your laptop or phone. Seattle Cancer Care Alliance has information online about common sexuality concerns, sexuality and self-care during treatment and an excellent resource list. The American Cancer Society and other sites offer a slew of information on sexuality and cancer for both men and women.
Cancer’s sexual aftermath can be devastating for some; nominal for others. But there’s no reason to suffer in silence. Talk to your doctor; check out a workshop. Get the help you need. Otherwise, you may just continue to stumble around in the dark. And not in a good way.
Read Part 1 of our series on the sexual aftermath of cancer treatment .
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 firstname.lastname@example.org.