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A study out of Sidney Kimmel Cancer Center (SKCC) at Thomas Jefferson University in Philadelphia found that 87% of survivors of breast, pelvic, endometrial, prostate, bladder and rectal cancer said treatment affected their sexual function or desire.
A month after Alegra Woodard received a diagnosis of stage 1 cervical cancer, she underwent a radical hysterectomy, a surgery that removes the uterus, ovaries, fallopian tubes, left and right pelvic nodes, cervix, tissue around the cervix, and the upper part of the vagina. She was just 36 years old, a wife and mother working as an information technology practitioner in Honolulu.
Her life changed overnight.
“The next day I felt like another person,” Woodard says. “The change was drastic. I went into full menopause. I started sweating, my sexual desire (was) nonexistent, and intercourse became very difficult because it felt like someone had poured sand in my vaginal area.”
Woodard isn’t alone. A study out of Sidney Kimmel Cancer Center (SKCC) at Thomas Jefferson University in Philadelphia found that 87% of survivors of breast, pelvic, endometrial, prostate, bladder and rectal cancer said treatment affected their sexual function or desire. Although sexual side effects are more often reported by women, they affect men as well.
Steven Dupin, a personal trainer, comedian, author and patient advocate for the Prostate Cancer Foundation, (visit their site to learn more about the side effects of prostate cancer), lives in Los Angeles and was 42 when he started having problems with frequent urination and prostate pain. However, he didn’t receive a diagnosis of prostate cancer until two years later, when his doctor ran a routine PSA blood test, which is used to screen for prostate cancer. Dupin says that his biggest fear, besides dying, was that he would have problems with sexual intimacy as a result of treatment. Both of these fears are common.
“The No. 1 question I get from other men I talk to is ‘Does the plumbing still work?’” Dupin says. “I always say, ‘Sure. The only difference is that now instead of ejaculate, fairy dust and glitter come out.’”
That last part, of course, isn’t true. But the stories patients tell of sexual side effects resulting from cancer treatment are.
So, what causes these problems, and what solutions are available for survivors?
The SKCC study found that the most common sexual side effects were painful intercourse (73%), body image distortion (54%) and the inability to achieve orgasm (42%).
According to Ashley Arkema, a nurse practitioner in the Female Sexual Medicine and Women’s Health Program at Memorial Sloan Kettering Cancer Center, the most common concerns reported by the patients she sees are low libido, sexual pain, diminished arousal and changes in body image. Fatigue, anxiety and depression can also affect sexual function. And she attributes these problems primarily to cancer treatment, including surgery, chemotherapy, hormone therapy and pelvic radiation, which often cause sexual side effects that are associated with hormone depletion. For younger patients this is especially true. Abrupt early surgical menopause or chemical menopause causes a rapid drop in estrogen, leading to more severe and sudden symptoms. Hormone therapy, including tamoxifen and aromatase inhibitors, commonly used in breast cancer treatment, can also have a negative impact on sexual function. And pelvic radiation can lead to menopause, vaginal narrowing and scarring.
Dr. Mindy Goldman, director of the Gynecology Center for Cancer Survivors and At-Risk Women at the University of California, San Francisco, who serves as the chair of the menopause panel and the co-chair of the sexual function panel for the National Comprehensive Cancer Network (NCCN), agrees that the lack of estrogen causes many of the most common forms of sexual dysfunction in women. However, there are other causes.
“There are many aspects of cancer treatment that can cause sexual dysfunction, and the causes are often multifactorial,” Goldman says. “Vaginal dryness can lead to pain and decreased desire. Surgeries can lead to body image changes. Stem cell transplants can cause graft-versus-host disease that can lead to scarring, pain and decreased arousal. Radiation can lead to pain and scarring. The cancer itself can cause pain. And then (a lot of women) also have cancer-related stress, anxiety and depression that can affect their overall sexual functioning.”
She says the key to treating patients is a multifactorial approach and finding safe and effective options, especially for those who shouldn’t use hormone therapies.
Dr. Gregory Broderick, a urologist at Mayo Clinic and a professor of urology with Mayo Clinic Alix School of Medical Education in Jacksonville, Florida, sees male patients who have cancer who’ve experienced sexual dysfunction, incontinence (loss of bladder control) and urethral strictures (scarring that narrows the tube that carries urine out of the body).
Together, Goldman and Broderick co-chair NCCN’s panel on sexual health. NCCN is a nonprofit alliance of 30 cancer centers that partner to improve cancer care and survivor issues by reviewing and updating guidelines. They want to make sure certain side effects (like this one) are not overlooked.
The most common problems he sees are erectile and ejaculatory dysfunction, loss of libido, incontinence or other urinary problems like climacturia (when a man leaks urine as he ejaculates). There can also be body image challenges, especially for men who live with a stoma or ostomy bag after colorectal or bladder surgery.
“In terms of the prostate surgery, a significant risk to a man’s erectile function status is whether or not the pelvic nerves that regulate erection can be spared at the time of surgery,” Broderick says, noting that a more recent approach to the operation, called robotic prostatectomy, has advantages because “patients don’t require a large abdominal incision, have much less bleeding, and can get back to work sooner.”
Dupin was able to have robotic surgery, and he is able to have sex and achieve orgasm. He doesn’t have problems with a lack of libido or incontinence. The only sexual side effect he’s experienced is the loss of ejaculate.
After Woodward’s surgery in 1999, she was prescribed a topical vaginal medication called Premarin (conjugated estrogens) to lubricate and improve dryness. But this still left her unsatisfied.
“All of the large guiding organizations say to use over-the-counter topical agents first,” Goldman says. “This includes things like moisturizers, pH balanced gels, soothing agents, oils and lubricants. Some of these things can alleviate symptoms if they’re used regularly.”
Arkema says her first few recommendations include a variety of over-the-counter products, but these solutions don’t always work for everyone.
Goldman notes there are vaginal hormones that can help treat dryness and sexual pain by targeting the tissue directly. The most common are vaginal estrogens which exist in a cream, a ring formulation and a suppository.
Furthermore, Goldman says there are now Food and Drug Administration (FDA) approved prescription medications that treat various types of sexual dysfunction. Osphena (ospemifene) and Intrarosa (prasterone) are approved for treatment of painful sex. Finally, there are also female versions of Viagra, as well as the FDA approved Addyi (fibanserin) and Vyleesi (bremelanotide), which are both approved for treatment of hypoactive sexual desire disorder in women.
“I think there’s a common misconception that nothing can be done,” Goldman notes. “Some providers assume the only treatment options are hormones, and for many breast cancer patients these are contraindicated (not advisable). Even so, there are lots of other options.”
Broderick says that when meeting with a new patient, he starts by looking into how they were treated because the type of therapy often dictates the sexual side effects and recommendations. The primary treatment options include PDE5 inhibitors (which block the PDE5 enzyme, allowing blood vessels to relax and increasing blood flow), such as Viagra (sildenafil cirate), Levitra (vardenafil), Cialis (tadalafil) or Stendra (avanafil); penile injectable therapy; penile prosthesis; and the use of a vacuum erection device.
Although robotic surgery has come a long way, some men still struggle with incontinence, which quickly becomes a critical sexual side effect.
“When a male patient comes to me with incontinence and erectile dysfunction, I start by asking where their partner is sleeping, because one thing I’ve learned is that partners will not sleep in the bed with someone who is incontinent,” Broderick notes. “And they’re less likely to become intimate with someone who isn’t in the same bed. So, you really need to address the incontinence first.”
After a prostatectomy, Broderick says all patients go through a phase of neuropraxia (when the nerves aren’t working quite right). It takes time to return to normal erectile status. Generally, erectile function begins to come back after about six months. He says if it hasn’t come back by 18 months, it probably won’t.
Furthermore, radiotherapy, which is good at killing cancer, affects small-vessel blood flow, so patients who have been through radiation can have difficulty initiating and maintaining erections. Most of these patients, however, respond to PDE5 inhibitors like Viagra. On the other hand, a man who has lost nerve function from a prostatectomy needs direct vascular stimulants like penile injectable therapy.
“So, I have a counseling plan for patients depending upon whether I’m seeing him six, 12 or 18 months after his operation and his willingness to undergo rehabilitative strategies,” Broderick says. “Some patients come in and they’re part of a couple who are both in their 70s, and the erectile dysfunction is not as impactful for them simply because they weren’t all that sexually active prior to the surgery. Maybe his partner has gone through menopause and is less receptive of penetrative sex. What she’s really looking for is the maintenance of their intimacy without penetrative sex. Sometimes my job is just getting the two partners to understand where they both are with all of that.”
Although the range and severity of sexual side effects can vary greatly, one thing that helps across the board to increase treatment rates is talking about what’s going on.
Findings from the SKCC survey of 400 survivors found that 87% said they experienced sexual side effects — but most also said their oncologist had not asked them about these side effects. And patients often don’t bring up the topic themselves, reporting that they feel embarrassed, think there’s no help for the problem or don’t know which type of physician to talk to about it.
Woodard says she wishes someone would have talked to her about what to expect before her surgery, but at the time she was being treated in a military clinic. She received her diagnosis from a nurse practitioner and then transferred to the hospital to meet with the surgeon and oncologist.
“I remember that session when I met with the oncologist who looked at my chart and said, ‘You have cancer? That’s odd,’” Woodard recalls. “These conversations were never about gutting me out like a fish and what would happen afterward.”
She went into surgery without any idea about what was coming.
“There’s a stigma or discomfort for many physicians in talking about this,” Goldman says. “There’s a study that showed that if the patient feels discomfort coming from their provider, they often won’t bring the issue up. So there (are) a lot of people who may assume that this is something they have to live with.”
Goldman sees no reason that sexual dysfunction can’t be talked about like the other side effects of treatment, such as neuropathy, hair loss and pain.
At Mayo Clinic, Broderick says they train their surgeons to do exactly that: talk about all the possible side effects.
Fortunately for Dupin, the possibility of sexual side effects was addressed. His doctor told him he may experience erectile dysfunction and gave him a prescription for Viagra that he decided not to use.
Sexual side effects of cancer treatment are common, and Goldman wants patients to understand this and feel comfortable asking about what treatments are available.
Woodard, who now volunteers with the National Cervical Cancer Coalition, (their website can help patients and survivors understand their side effects more and offers support), agrees that patients need to speak up.
“My advice is to be more demanding,” she says. “Ask for resources. Often treatment is not only a physical procedure but one that affects your mental and emotional health. You should be in touch with an advisor or someone that can help you navigate the emotional part of this.”
More importantly, Woodard wants patients to know they’re not alone. “There (are) a number of us out here,” she says. “Seek help, ask questions, be persistent and don’t give up. Don’t give in.”
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