It’s not just HIV that gay men need to worry about.
By Brandon Wolf • Photo by Yvonne Feece
According to the National Cancer Institute, prostate cancer is second only to nonmelanoma skin cancer in number of cases diagnosed each year. The risk significantly increases with age and is higher among African Americans and those with a family history of prostate cancer. Alcohol consumption may also increase risk; and being overweight, though it does not increase the risk of getting the disease, increases the risk of dying from it. The good news is that only 1 in 35 diagnoses result in death, and the five-year survival rate for those diagnosed 1996–2004 is 98.9% (99.5% for white men, 95.4% for black men). Psychologist Dr. David Latini recently sat down with
OutSmart to talk about prostate cancer—how it is diagnosed, what the treatment options are, the support available for those confronting the disease, and how the gay prostate-cancer experience differs from the experience of heterosexual men.
David Latini is no stranger to the ravages of cancer. He was 10 years old when he lost his mother to bone cancer, and during his father’s later years, he witnessed him living with the side effects of prostate cancer and its treatment.
Latini, a native of Baton Rouge who holds a PhD in psychology, previously worked with cancer patients in San Francisco and Los Angeles for five years. For the past three years, he has worked in Houston with the Houston Center for Quality of Care and Utilization Studies, a joint effort of Baylor College of Medicine and the V.A. Health Services Research and Development Center of Excellence. Grants from the Department of Veterans Affairs, the National Cancer Society, and the National Cancer Institute constitute its $12 million funding.
Latini heads up a group that studies prostate cancer treatment and identifies ways to improve it. “One area of focus is health literacy,” he says. “We develop brochures about prostate cancer that are easy to understand. We don’t use technical words; we gear information to a sixth-grade reading level. We work to encourage and expand psychological support at all stages of dealing with this disease. We are especially pleased to team up with OutSmart in an effort to increase education and awareness in the GLBT community.”
Understanding the Prostate
“The prostate is a small organ about the size of a walnut,” Latini explains. “It is located in the groin area, on the other side of the rectal wall. It has nerves wrapped around it, which are used in the erection process. It is responsible for much of the ejaculation fluid. Many men like to have their prostate stimulated during sexual activity, through receptive anal intercourse or through the use of a finger or sex toy. Such stimulation is enjoyed by some heterosexual men, but this practice is more commonly attributed to gay men.”
The most common test for prostate cancer is the digital rectal exam (DRE), where the physician inserts a finger in the rectum and presses downward, feeling for enlargement of the prostate or the presence of a lump. The prostate-specific antigen (PSA) blood test is also used. “Prostate cancer produces excess proteins,” explains Latini, “so the PSA test identifies the level of protein in a blood sample. If the PSA level is high, we may suggest a biopsy.
“We don’t really know why prostate cancer is so prevalent,” says Latini. “We do know that there are variations in prevalence based on geography. For some reason, it is less frequent in Asian countries. It might be diet or it might be genetic. We don’t know the prevalence of prostate cancer among gay men. This is because sexual orientation is not included in most medical data.”
Latini points out that prostate cancer is often very slow growing. “Treatment varies,” he says. “Sometimes it’s active surveillance; at other times the treatment may be surgery, radiation, or hormonal therapy. In addition there are various experimental treatments being used, but mostly outside the United States.”
When surgery is chosen, the entire prostate is removed. Radiation involves targeted radiation or the planting of radioactive seeds in the prostate. Hormonal therapy changes the balance of testosterone in the body. One experimental treatment, high intensity focused ultrasound, literally melts the prostate.
During the post-operative period, the patient must wear a catheter to empty his bladder. Incontinence usually continues for about six months. A more permanent side effect is erectile dysfunction. Surgery does not limit the ability to achieve orgasm, but patients no longer ejaculate fluid. At each point in the process of dealing with a prostate cancer diagnosis and treatment, depression is often a major factor.
The Effects of Prostate Surgery on Gay Men
“Gay men fall off the radar when it comes to psychological support,” Latini says. “Most survivor groups are geared to heterosexuals. Generally, men talk about difficulties with vaginal sex, and sometimes their wives are included in support groups. But gay men are more concerned about anal sex. It takes a harder erection to penetrate their partners. Try to imagine how many straight men want to hear about that in a support group. Or how many gay men want to talk to such a group about their lack of shooting cum during oral sex.”
In a heterosexual relationship only one partner is at risk of prostate cancer. But in gay male relationships, both partners could develop prostate cancer, so the risk rate in relationship doubles. Latini adds, “Heterosexuals tend to form monogamous relationships more often than homosexuals. So the number of gay men who face prostate cancer without spousal support is higher.”
Latini also points out that transgender people can be at risk. “Male-to-female transgender people still have a prostate, even if they have undergone sexual reassignment surgery. Therefore, they too are at risk.
“Treatment options and their side effects should be carefully explained,” says Latini, “but oftentimes the nuances of gay men, bisexual men, and transgender people are not taken into account. For example, radiation treatment can affect bowel control. That may be of minor importance to an anal top, but it is of high importance to an anal bottom. Surgical options that result in erectile dysfunction may not concern an anal bottom, but it changes the entire sexual performance of an anal top.”
Incontinence usually goes away, but until it does, protective absorbent pads must be worn under clothing. “Gay men like to work out at gyms,” Latini points out. “How many men want to remove their gym shorts and let their locker room buddies see a diaper? Doing bench presses can be embarrassing if you start to pee down your leg and can’t stop it.”
There are several possible solutions to erectile dysfunction. “Viagra can help to achieve an erection,” says Latini. “It’s also covered by health insurance. However, there are limits to the number of pills each month. That can mean a limit to one’s sex life. If pills fail, one can try to inject medication using a needle at the base of the penis. Vacuum pumps can help some by increasing the blood flow into the penis, and then a cock ring is placed at the base of the penis to hold the extra blood in. In some cases, a suppository is inserted into the lips of the penis. The pellet dissolves and causes erection. Still other methods include implanting a rod inside the penis or pumping fluids inside a penis to help it achieve erection.”
Working to Improve Prostate Cancer Treatment
Focusing on the future of prostate cancer management, Latini points to the current focus on computerization of medical records. “Studies are now under way to try to understand the bigger picture of prostate cancer,” he says. “We want to be able to provide metrics for reading and interpreting the results of all the different treatment outcomes. It is hoped that doctors can then be trained to use the best practices that have been identified.” Latini intends for these practices to include full awareness of the needs of the LGBT community.
“All men need to understand the importance of regular testing for prostate cancer,” Latini says. “Educational efforts in this regard should reach across all ethnic, social, and economic groups. In addition, all men diagnosed with prostate cancer need proper medical counseling to help determine the most appropriate treatment method. And, of course, all men should be able to access psychological support.
“People grieve when a change occurs in them,” says Latini. “They have to deal with the fact that their body has betrayed them. Sex is not the same as before. Urination can be difficult to control. Lots of guys struggle with how they think about themselves. Men tend to have masculine confidence based on their sexual ability. If a single guy can’t have sex, how can he start a new relationship? Why should he bother talking to that cute guy at the bar if he feels insecure about his sexual performance? Gay men need to be able to talk these things out with others, or they can become isolated.”
The Gay Men’s Prostate Cancer Support Group meets at the Montrose Counseling Center on the second and fourth Tuesday of each month, 7–8:30 in the evening. This is an ongoing support group, and participants may join at any time. No medical referral or screening is required, and you do not have to be a client at MCC to join. You must be at least 18 years old to participate. There is no fee to participants. For information, call MCC at 713/529-0037, ext. 301, or e-mail Dr. Latini at [email protected]
Prostate Survivors Speak
Prostate cancer is an extremely personal and private disease. It intrudes on the most private aspects of a man’s life, affecting his sexual performance and his ability to control urinary function. OutSmart appreciates the courage and compassion of prostate cancer survivors Jerry Patrick and Robert Rice, who allowed us a first-hand account at how they have dealt with the diagnosis, treatment, and side effects of prostate cancer. It is the hope of both men that sharing their stories will make it easier for others who will one day have to deal with a prostate cancer diagnosis of their own.
“Back in 2007, my PSA test came back as 4.5, and it had increased from a 3.1 just a year before,” says 49-year-old Robert Rice. Because of the high score and the sudden increase in the score, there was cause for concern.
Rice moved to Houston from Morton, a small town near Lubbock. “I taught high school social studies here in Houston for four years,” he recalls. “I also volunteered for the AIDS Foundation Houston at the old Jefferson Davis Hospital in the mid ’80s. As I was working with AIDS patients, I realized I really wanted to do more, so I decided to go to nursing school. Now I’ve been in nursing for 15 years.”
Rice now works as a registered nurse and is again in school; this time to qualify as a nurse practitioner. He has the background to understand the implications of his PSA results and was quickly able to put them into a broader medical perspective. “Decades ago, before the PSA test was developed, prostate cancer detection was based more on symptoms,” Rice observes. “For example, someone might begin to notice difficulty urinating. By the time the symptoms appeared, the cancer had spread. Today we are finding prostate cancer in patients at younger ages. It’s not that prostate cancer is increasing among younger people, it’s just that detection is possible at a younger age.”
Diagnosis Postpones Career Goals
As a result of the high PSA readings, Rice underwent a prostate biopsy. “I think a prostate biopsy is absolutely horrid, and no one should be put through it without a good reason,” he says emphatically, “so be sure that you have a doctor you can really trust to know what he’s doing.
“During the biopsy I was anxious,” Rice recalls. “I remember hanging onto a bar and counting each time the needle went in. I knew I would be glad when we were done with 14. It’s done with a tube that is inserted into your rectum and is ultrasound guided. They can give you a relaxant, but I didn’t realize that and so I didn’t ask for it.”
The biopsy was performed during the December holidays, and Rice didn’t discover the results until early January, a byproduct of missed telephone messages and holiday office hours. “Five of the 14 tissue samples were positive for cancer,” he says. “I also had a high Gleason score of 7, which meant moderately aggressive cancer.
“The diagnosis started a whole process of upheaval,” Rice remembers. “The greatest stress was my enrollment in school. I had to make a decision within a week if I was going to continue or not, because I was starting into clinicals. I finally decided I wouldn’t be able to continue physically, emotionally, and mentally. This set me back a whole year.”
Both the urologist and oncologist, whom Rice consulted at the M. D. Anderson Cancer Center, recommended surgery, because of his young age and because it hadn’t spread. “I asked the urologist how many of these surgeries he had done and he said thousands,” says Rice. “I also joined an Internet support group, and the common wisdom was to find a good surgeon who is adept at nerve-sparing procedures.”
Rice reflects on his recovery: “It’s an invasive surgery. There wasn’t much pain — it was more soreness and discomfort. I woke up with a catheter. I’ve never used one before, but I wasn’t worried because I’m a nurse. There was also a little tube in the area where they did the surgery to drain out blood and fluids that can accumulate.”
He also remembers the daily care of having a catheter for nearly two weeks. “You take a shower once a day. Then you put Neosporin around the tip of your penis three times a day. That helps prevent any urinary tract infections; it also lubricates the catheter so it doesn’t stick. You have a day and a night bag. When you change from one to the other, you have to wash the used one out with Clorox solution to sterilize it.”
Learning to Live with Side Effects
“The worst thing was having to wear a diaper,” Rice remembers. “It’s so demeaning as an adult. It’s de-masculinizing. You’re like a kid out of control.
“A man has three sphincter muscles that keep his urine from flowing out of the bladder,” says Rice. “After prostate cancer surgery, there is only one left to be the gatekeeper. So you have to exercise that muscle when you urinate. You purposely try to stop the urine and hold it for about ten seconds at a time. I’m now totally continent again.
“Being anally receptive, it wasn’t a big issue for me to have an erectile dysfunction,” Rice notes. “I get about 85% of the erection that I did before. It just takes more concentration to achieve and maintain one. I have to be patient and so does my partner.
“It’s like a second coming-out process, telling people that you’re a prostate cancer survivor,” he observes. “You have to explain that you can function sexually, but it’s a bit different. For the most part, people are very accepting but need some education. Most men don’t know what a prostate is or what it does. Sometimes I get a piece of paper out and draw pictures. Sometimes people wonder if they can catch it. And sometimes people are sort of freaked out that I’m not going to cum. So I explain that I really am having an orgasm and that I’m not faking it.”
Support Group Provides Feeling of OK-ness
Rice found out about the Gay Men’s Prostate Cancer Support Group at the Montrose Counseling Center through an Internet support group. “I went to my first meeting a week before my surgery,” he recalls. “It was a comfort knowing that they were there. The most important thing the group did for me was to affirm that I was okay and that what I was going through was okay.
“The group gave me a lot of perspective on being gay and having prostate cancer,” Rice says. “The literature I’d read at that point was for heterosexuals. It was good to have a group which encouraged me to ask my doctor questions about differences for gay men, because we do have different concerns.”
Rice remembers that he began to feel depressed six months after the surgery. “I was telling my friends that I was saving my energy. But there had been an incredible buildup of anxiety, and when it was over, I still had to process what had happened to me. I had to grieve. For one thing, there is grieving for the loss of ejaculations. Cum has meaning. In every porn film I’ve ever seen, that’s the big shot. I had to find out who I was now, as a sexual being.
“It’s not so much prostate cancer, it’s just that you’ve had cancer,” Rice notes. “Cancer is the most dreaded word in our language. So regardless of whether you’re gay or straight, top or bottom, you’ve had cancer. Every single morning when you wake up, you’re reminded of it. Cancer stops you in your tracks. It slaps you hard in the face. You have to find out who you are again, spiritually and emotionally.”
Rice feels that he has learned a great deal from his experience. “It really makes me aware of my mortality,” he says. “It brought me to a new realization of who I am and who I want to be as a person, because now I don’t have time to waste. I may be only 49, but I’m aware of how precious life is.”
“It was nine o’clock in the evening in the fall of 2005 when I got the phone call,” says Jerry Patrick. “I was watching a film on cable TV with my partner, Tim. The doctor told me that results from my prostate biopsy had come back positive.”
Patrick, who grew up on the north side of Houston and graduated from Aldine High School, was 40 years old at the time. “I’d been going to the doctor for other health issues, and I had been tested regularly with the PSA and DRE tests. Although my PSA tests were always good, my doctor could feel a roughness in my prostate with the DRE test. I underwent a prostate biopsy and two of the 12 sample cores were cancerous.”
“At first I wasn’t upset,” Patrick recalls. “It hadn’t set in yet. But I made arrangements to be off work and told my coworkers. I began to read everything I could. Several days later, it set in and I finally had a good cry.”
Patrick’s employer was supportive, and short-term disability coverage made it possible for him to take eight weeks’ leave with pay. “My coworkers were concerned,” Patrick says. “People came and hugged me. Some women cried.
“I went to a urologist for an opinion,” he recalls, “then I got a second opinion. I also asked my cousin, who is a doctor. All three suggested an open prostatectomy. Forty is a very young age to be diagnosed with prostate cancer, so they all felt that the prostate should be removed.”
Two months after the diagnosis, Patrick entered a local hospital for surgery. “I remember my partner, Tim, saying a prayer with me, and then I was wheeled off to the operating room area. Tim kissed me right before I went in. I remember the operating room briefly. Then I woke up and I was hurting.”
Patrick remembers that he woke up with a catheter in his penis. “Before I went into surgery, the worst thing was the awareness of living with a catheter for 12 days,” he says. Three days after the surgery, he was released to go home.
“I walked around the neighborhood each day for a mile and a half,” he says. “The catheter is attached to a leg bag, so it was strapped to my leg. Warm-up outfits quickly became my best friends.”
Dealing with Surgery’s Side Effects
Just as he had been warned would happen, Patrick had no control over his urination for the first couple of weeks after the catheter was removed. “So I had to wear a diaper at first, then switch to several pads; finally I got to using one pad. That lasted for a full year. But I still have some problems with continence. For example, if I cough or sneeze, I can leak. If I’m at the gym and lifting weights and move wrong, I can leak. That’s frustrating.
“I’m still having a problem with erectile dysfunction,” he says, “but there is a new drug called Tri-Max that is incredible. It’s injectible with a needle right at the base of the penis. The effects can last for an hour and a half. I can get about 15 injections from a bottle. It did bother me at first to give myself the injections, but now I’m used to it.” Unlike Viagra, however, the drug is not covered by health insurance.
“When the prostate is gone, ejaculations are gone forever,” says Patrick wistfully. “One still has an orgasm; it’s called a ‘dry orgasm.’ Sometimes it can even be more sensational than pre-surgical orgasms. But still the idea of an orgasm is to ejaculate. The surgical procedure I had was a nerve-sparing one. The fact that I can get an erection now with the help of an injection shows that my nerves are still intact.”
Patrick admits that when he realized his sex life was different, he became depressed. “A person becomes less secure about being a man,” he notes, “because when you’re young, you should be able to have sex without it being an issue. When you’re not able to, it’s disappointing and then you start to back away from it altogether.”
Prostate cancer also affects the partners in committed relationships. “Tim has been absolutely incredible through this whole thing,” Patrick says, “but he was careful not to show any emotions. However, one day about eight months after the surgery, I had a bad day. My doctor had said my PSA score was elevated, and I was very frustrated. I was talking to Tim and suddenly he began to cry. Then I came to realize that he had always been just as scared as I was. The hardest thing for me was to realize the effect it had on him.”
The Importance of Support
After the initial diagnosis, Patrick checked out Internet bulletin boards. He read stories of quick recovery, and many of these were people 30 years older than he was. “I thought since I was younger I would have better results. But that wasn’t the case at all. I wish I had been encouraged to be more conservative in my expectations. I’m pleased because I’m alive and the cancer is gone, but I’m not pleased with the outcome.”
Nearly two years after his surgery, Patrick’s doctor told him about the Gay Men’s Prostate Cancer Support Group that had just been initiated at the Montrose Counseling Center. “I wish this had been there for me when I was first diagnosed,” he says. “The support group has given me the peace of knowing that I’m actually okay. There are other people out there with the very same problems. It always feels good to know that you’re not the only one.
“David Latini, the facilitator of the support group, is a great guy,” says Patrick. “He’s very knowledgeable; he’s studied prostate cancer from many angles. Because he’s a psychologist, it’s easy to discuss feelings with him. If this group had existed before my surgery, I probably would have had many long nights thinking about things people were saying, but I would have had a more realistic attitude about my outcome.”
Patrick says that there were support groups available to him at the time of his surgery, but they were basically for heterosexuals. “It takes a harder erection for me to have anal sex than vaginal sex,” Patrick notes. “I don’t think that straight men could really understand the issues that gay men face. Then, too, gay men are often more emotional and more sexual than straight men.
“This group has given me so many more things to talk about,” Patrick says. “When I started the Tri-Max drug, it didn’t seem to be working. The group encouraged me to go back and work with my doctor again. So I did, and after adjusting the dosage, it did work. Some of my friends still think I’m joking when I say I use an injection to get an erection, but the members of the support group understand.”
Patrick says that he agreed to share his story because it’s something he feels needs to be more talked about. “I think it’s especially important to know there is a support group where gay men can go and share similar experiences,” he says. “This group could be very important for other people, and no doubt it would have a good impact on their lives.”
Brandon Wolf profiled Annise Parker in the June issue of OutSmart magazine.
Prostate Cancer: The Statistics
“Based on rates from 2003-2005, 15.78% of men born today will be diagnosed with cancer of the prostate at some time during their lifetime.”
1 in 10,149 from birth to age 40
1 in 28 for men age 40 to 60
1 in 7 for men age 60 to 80
The median age at diagnosis, during the period 2001–2005, was 68; the median age at death, 80. This means that half the men diagnosed were over 68 and half of those dying were over age 80.
Source: National Cancer Institute
Prostate cancer by race/ethnicity (all ages):
All Races 163.0 per 100,000
White 156.7 per 100,000
Black 248.5 per 100,000
Asian/Pacific Islander 93.8 per 100,000
Amer. Indian/Alaska Native 73.3 per 100,000
Hispanic 138.0 per 100,000
Source: National Cancer Institute (for the period 2001–2005)
Increased death risk with weight*:
Overweight (BMI 25–29.9) 25% increased risk
Mildly obese (BMI 30–34.9) 46% increased risk
Severely obese (BMI 35+) double the risk
*Obese men do not have a greater chance of getting prostate cancer, but a greater chance of dying from it.
Source: National Cancer Institute
Increased risk of developing prostate cancer with alcohol consumption:
Studies show varying risks from none to 67%.
(1) “Men who drink two or more standard drinks a day (or 14 drinks a week) or more have about a 20% greater chance of developing prostate cancer.” Source: Fillmore, Bostrum, Chikritzhs, Pascal, & Stockwell, Molecular Nutrition and Food Research, March 2009. (an examination of 35 studies)
(2) “Consuming the equivalent of at least eight cans of beer in just a day or two increased risk by 64 percent over nondrinkers. The association between alcohol intake and prostate cancer was strongest among men with Type II diabetes.” Source: U.S. News & World Report, April 2009, sourcing Johns Hopkins White Paper on Prostate Disorders. (a study of 48,000 men over a 12-year period)
(3) “Wine or beer consumption was unassociated with prostate cancer; however, moderate liquor consumption was associated with a significant 61–67% increased risk of prostate cancer. Men initiating alcohol consumption between 1977 and 1988 had a twofold increased risk of prostate cancer compared to men with almost no alcohol consumption at both times.” Source: Sesso, Paffenbarger, & Lee, Journal of Epidemiology, 2001. (a study of 7,612 Harvard alumni with a mean age of 66.6 years)
Brandon Wolf profiled Annise Parker in the June isssue of OutSmart magazine.