After treatment for bladder or prostate cancer, many survivors confront permanent sexual side effects. The good news is that treatments and psychological support are available.
When John Squire was first diagnosed with bladder cancer in January 2014, he was hopeful that treatment with bacillus Calmette–Guérin (BCG) would be effective. An immunotherapy vaccine made from a bacterium similar to the one that causes tuberculosis, BCG is administered through a catheter directly into the bladder, where it comes into contact with cancer cells and prompts the immune system to attack them. The advantage of this approach is that it causes few long-term side effects.
But a year later, Squire’s cancer came back, and this time the tumor had penetrated the muscular wall of the bladder. This meant he would need more intensive treatment.
“I knew I had to have my bladder removed, but I needed to decide what kind of system I wanted to drain urine,” recalls Squire, 75, of Rockville, Maryland. “My options were to have the doctors construct a new bladder, have an internal pouch or an external one. I decided on the latter approach. I thought it was the simplest way to take care of urination, with the reassurance that the surgery would get rid of the cancer for good.”
Yet this surgery comes with significant consequences. Dr. Trinity Bivalacqua, director of urologic oncology at Johns Hopkins Medicine, had to remove Squire’s bladder, prostate and seminal vesicles. Although Bivalacqua was able to spare the neurovascular bundle, which plays a key role in supplying blood to the penis and enabling men to have an erection, the surgery nonetheless injured those nerves and the surrounding muscle. For most men, this results in difficulty having an erection, or erectile dysfunction.
Squire was no exception. He tried some of the most common interventions, such as the oral medications Viagra (sildenafil citrate) and Cialis (tadalafil) and shots administered into the penis, but the pills didn’t work for him, and he didn’t care for the injections. He decided not to pursue those options.
“For me, a traditional sex life wasn’t the be all and the end all,” Squire says, “and that was true for my partner, Jean Sommerfield, as well. But we’ve been able to find other ways to give each other physical pleasure. Importantly, I’ve been cancer-free for five years. I’m happy that I was given another chance at life.”
While Squire has adjusted well to the changes he’s faced, male and female sexual problems that arise from treatment for bladder cancer, as well as those experienced by men after prostate cancer therapy, can create lasting challenges for many survivors.
Sexual dysfunction that may be temporary can develop after chemotherapy or radiation, and nerve damage from surgery can cause long-term effects. Men treated for prostate cancer with testosterone- suppressing drugs also experience sexual dysfunction. And while the problem is treatable with a variety of strategies, it is not always reversible. Only about half of men who undergo a nerve-sparing cystectomy, or removal of the bladder, recover their natural erectile function after two years, according to Bivalacqua.
Developing self-acceptance and adopting open communication with partners and new strategies for intimacy can help survivors acclimate to these changes. Fortunately, there is a lot of support available.
According to the American Cancer Society, in the United States, about 191,930 men are likely to be diagnosed with prostate cancer in 2020, while 62,100 men may receive a diagnosis of bladder cancer. That means 254,030 men may face treatment, along with its accompanying side effects.
Cystectomy is typically performed in patients with stages 2 to 4 bladder cancer, and radical prostatectomy, meaning removal of the prostate and surrounding tissues, is performed in men with stages 2 or 3 prostate cancer.
“Whether a man has his prostate removed to treat prostate cancer or his bladder and prostate taken out to treat bladder cancer, the impact is going to be very similar,” explains Dr. Run Wang, a urologist with UT Physicians/ McGovern Medical School at UTHealth and The University of Texas MD Anderson Cancer Center in Houston and an expert on sexual function following cancer treatment. “Even with nerve-sparing surgery, the impact on sexual function is immediate.
Depending on the man’s age and erectile status before surgery, it may take between three and six months for some function to start coming back, and a year or two for a maximal recovery of erection.” Even then, not all men get their sexual function back.
Wang points out that it’s important to resume sexual activity as early as possible following surgery. “By engaging in some activity, even masturbation, blood flow to the penis is increased, helping to preserve the tissue and improving the likelihood of achieving erections,” he says. To help restore function through temporary methods that allow more immediate sexual activity, he adds, “between 80% and 90% of men in my practice do choose some intervention following surgery.”
For most men, pills are usually the first treatment option, but often they are not enough. At that point, many men try penile injections, which they learn to administer themselves, before they want to have intercourse. One medicine or a combination of several are injected into the penis. According to Bivalacqua, if the surgery was done properly, injections should result in functional erections.
If both of these interventions fail, men may consider a penile prosthesis. This device must be surgically implanted and consists of a reservoir of saline, two cylinders and a pump. When a man presses the pump, the saline flows into the cylinders, causing an erection. This device is highly effective, working for most men who use it.
Nonetheless, most men experience some depression as they come to terms with the changes in their bodies. “To avoid some of the emotional shock, men and their partners should be educated before surgery about what to expect in terms of sexual function,” Wang says. “For example, men should be told that their erections won’t be as firm, and when they have an orgasm, they will not have ejaculate.
Surprisingly, some young men are unaware that the surgery will make them infertile, so that, too, has to be made clear. Another thing many men don’t know is that they can sometimes have an orgasm without an erection, usually by masturbating. Having this information on hand and being prepared for these changes helps in the recovery process, as does therapy and sexual counseling with a trained professional.”
Both men and women can get bladder cancer, although it is more common in men. In addition to the 62,100 men who will likely be diagnosed in 2020, about 19,300 women will receive this diagnosis. Regardless of gender, once the cancer invades the bladder’s muscular wall, surgery is usually the treatment of choice. Part of the surgery involves developing a new system for draining urine. Options include an ileal conduit, which includes an external pouch; an internal pouch called a continent cutaneous pouch; or a neobladder, constructed from part of the small intestine. There are pros and cons to each approach.
Squire opted for the ileal conduit, which involves having a stoma, or opening, created in the abdomen with an ostomy bag placed over it. He thought this approach would be the easiest to manage. “The internal pouch felt complicated because I would have had to use a catheter to drain it every few hours,” he says. “And, I heard that there was a lot of incontinence with the neobladders. The option I chose works well, though initially my ostomy bag leaked. I quickly discovered that the problem was that I wasn’t using the right kind. Once I fixed that, I haven’t had any problems.”
Dr. Mohit Khera, a urologist at Baylor College of Medicine in Houston, notes that, for some men, having an ostomy bag can affect sexual function psychologically. “They may feel disfigured,” he says. “For this reason, a majority prefer a neobladder, but there are potential side effects associated with this approach. Urinary tract infections are pretty common, as are stones in the bladder and scarring of the ureters going into the neobladder.”
With the urinary issues addressed, both men and women have to adjust to the changes in their bodies as they consider resuming a sexual relationship with their partners. Just as men will need assistance getting an erection, women sometimes have to deal with the ramifications of having their uterus and ovaries removed. In some instances, the vaginal wall, where the bladder sits, also may need to be removed, although doctors try to avoid taking out these organs whenever possible so that intercourse will remain possible. Significant changes result from surgery, many of which have a direct impact on a woman’s sex life.
“Not only do women experience vaginal dryness, but they also may have pain during sex,” Khera says. “If women have an ostomy bag, they may experience poor self- image, leading to a lack of desire. Fortunately, there are remedies to address these problems.”
Jeanne Carter, head of Memorial Sloan Kettering’s Female Sexual Medicine and Women’s Health programs in New York, concurs, emphasizing that the first step is seeking help for sexual difficulties. “A woman may come alone or with a partner, and during the initial consulta- tion, we talk about her needs and concerns in a safe, comfortable environment,” Carter says.
Addressing vaginal dryness and the pain and discom- fort it causes is often the place to start. “Many women don’t realize that there’s a difference between moistur- izers and lubricants,” Carter explains. “Nonhormonal moisturizers are for tissue quality and come as gels, creams or suppositories. For patients with cancer and survivors, they can be applied as often as three to five times a week for symptom relief and to maintain vaginal health. Lubricants are liquids or gels that are applied for sexual touch or vaginal insertion to decrease friction and enhance enjoyment. Both complement each other and are used for different reasons.”
For women experiencing vaginal tightness — another common problem that arises after surgery — dilators use a simple device that can help tremendously.
“We recommend dilators, cylinder devices used to stretch the vagina,” Carter says. “They come in different sizes and can help women learn how to relax pelvic floor muscles. A smaller dilator can help reduce pain before a vaginal exam, while a larger one works to prepare the vagina for penetration. They can go a long way in reducing discomfort and building a woman’s confidence about intimacy and future exams.”
Coupled with these approaches, Carter also suggests that women do pelvic floor exercises, called Kegel exer- cises. They involve tightening the pelvic floor muscles for three to five seconds and then relaxing them for an equal amount of time, repeating until muscle fatigue sets in. These exercises are easy to do and can help women learn how to control these muscles.
Finally, two medications approved by the United States Food and Drug Administration are available to help women who have a decreased interest in sex. Addyi (flibanserin) is a pill that acts on brain chemistry to stimulate desire. It must be taken every day. Vyleesi (bremelanotide), an injection that is administered before intercourse, also targets the brain’s hormones to activate desire.
Women should be aware, however, that according to the National Women’s Health Network, the clinical trials included mostly White women, and the medications were effective only for a relatively small number of women — between 8% and 13% for Addyi, and 8% for Vyleesi. In addition, there are side effects associated with the drugs.
The most common with Addyi are dizziness, sleepiness, nausea, fatigue, insomnia and dry mouth, and with Vyleesi, the most common are nausea and vomiting, flushing, injection site reactions and headache.
Having a fulfilling sexual relationship involves more than addressing the changes to the body resulting from treat- ment. Both men and women need to be psychologically ready, as well, which often means coming to terms with the ordeal they have been through. Daniela Whittmann, a clinical social worker, certified sex therapist and associate professor of urology at the University of Michigan in Ann Arbor, points out in a webinar presented under the auspices of the Bladder Cancer Advocacy Network that women need to go through a period of grieving for what they have lost before they can begin to build a new kind of sexual relationship. Whittmann stresses that intimacy will be different but can be just as satisfying.
Khera agrees, adding that what he calls the four pillars of health — diet, exercise, sleep and stress reduction — can make a big difference. “Vigorous exercise 90 minutes a week, getting seven hours of sleep each night and reducing the stress in your life can help improve an individual’s desire for sex,” he says. “And above all, avoid smoking, which can significantly increase the risk of many kinds of cancer, including bladder cancer.”
Perhaps the most important part of recovery for both men and women is communication. A couple needs to talk about what they are looking for in their sexual relationship, what new ways they can give each other pleasure and how they can continue to reinforce their emotional intimacy.
Khera adds that setting new expectations and goals is a key part of the recovery process. “Having a supportive sexual partner is essential,” he says. “If both partners encourage each other, there’s a good chance that they can find a way to be successful.”
Some couples learn to redefine intimacy. “John and I find deep satisfaction with emotional intimacy, traveling together, spending time together and enjoying each other’s company at home,” says Sommerfield, 72, Squire’s partner of seven years. “John and I have maintained a fulfilling physical sexual relationship. We continue to give one another phys- ical pleasure, just not through traditional intercourse. We know that cancer doesn’t stop your life. In fact, it has made us both — and our relationship — stronger.”