HOW A GAY MAN WITH PROSTATE CANCER DEALT WITH PERSONAL ISSUES
BEFORE AND AFTER HIS PROSTATECTOMY
date of diagnosis: 07 March 2006
date of surgery: 11 April 2006
treatment: radical prostatectomy
date of this essay: January 2007
date of birth: 18 December 1939
place of birth: Berks County, Pennsylvania
residence: Brooklyn, New York
education: Masters in Fine Arts, Carnegie-Mellon University
occupation: retired: Curator of Textiles, Cooper-Hewitt Museum
current activity: freelance textile historian and artist
The aim of this essay is to recount my own experiences in dealing with prostate cancer from diagnosis through a prostatectomy and recovery, and to share what I experienced with other men. (I will not be discussing treatment options because I did not research them prior to surgery.) Most of the medical aspects were adequately explained, but some non-technical issues were not mentioned or explained in detail. I should say at the start that at no point in the medical process was I overly alarmed or frightened by the prospect of surgery.
Following the Preface and the section titled Prior to Surgery, my essay is divided into two sections: Phase I: While in the Hospital; and Phase II: At Home Alone: The First Few Days, The Process of Recovery, and Getting on With Your Sex Life. These sections are followed by a brief Follow Up and Conclusion.
Many of the points that I raise are not limited to gay men, but being gay made it relatively easy for me to discuss sexual issues that are irrevocably associated with prostate cancer. Straight men would very likely find it difficult to have such talks with their doctors, therapists, other men, and women. It seems to me that it is a not well-hidden secret that many women are as interested in male sexuality as gay men, but I doubt that this holds true for straight men. Therefore, gay men have a responsibility to speak out about prostate cancer in general and, in particular, about the changes in sexual perceptions and performance that prostate cancer imposes.
Don’t be surprised if your doctors seem not to volunteer very much information. This may be normal, provided that basics are covered. It is difficult to draw the line between basic information and too much information. For example: there were certain facts that I did not want to know, such as the exact location and length of the incision and possible complications, because I knew they would scare me. I was not about to worry about complications that in any case would have to be dealt with later. The issues that did alarm me during my recovery were personal, and various health care providers could have discussed them with me, but they did not, and it is these issues that I want to point out.
Trust your general practitioner and urologist/surgeon. If you don’t, find others. It would be extremely helpful if your trusted GP had successful prostate surgery, as mine had. It was because of his diligent testing that my cancer was detected. My GP is also gay and I will refer to him here as Dr. R. Given my doctor’s personal experience, I felt his own urologist/surgeon, who is not gay, came well recommended.
My cancer was detected as a result of steadily rising PSA counts. The protein that is secreted by the prostate, Prostate-Specific Antigen or PSA, some of which spills naturally into your blood system, is used to detect various potential problems in the prostate (Perlman and Drescher 2005, p. 177). While a PSA count is not in itself an indication of cancer – cancer cells generally produce much more PSA than normal cells – and counts can be way above ‘average’ for many men who are not diagnosed with cancer – my PSA count had been going up gradually for a number years and warranted five biopsies starting in 2000. I became increasingly anxious because my dad had had prostate cancer, although at a more advanced age; I was 66. My diagnosis in March 2006 came as a sort of relief. No more waiting, and I was immediately prepared to follow through with treatment. When my cancer was diagnosed my PSA count was 20, and its virulence was rated at 6 (3 +3) on an ascending scale from 2 to 10, known as the Gleason Score (Perlman and Drescher 2005, p. 175).
My urologist/surgeon essentially presented me with only one treatment – a radical prostatectomy or surgical removal of my prostate. He did not recommend radiation as a primary treatment because it hardens tissues and makes subsequent surgery more invasive and difficult. Radiation would be an option if follow-up treatment became necessary after surgery. Whether or not my cancer might have been delayed by drinking tomato juice with a few drops of oil of oregano and taking Saw Palmetto, I have no idea. Whether or not my cancer might have been reversed by alternative homeopathic means, I do not know. These regimens require strong faith – of which I have very little. I requested surgery as soon as possible, and it was scheduled for mid April 2006.
After you receive your diagnosis, be prepared to take care of yourself even if you have a partner/spouse and good friends. Be able to put your arms around yourself and give yourself a huge hug. Find a role model for self care. Mine was my mother who was a registered nurse whose care and attention to her patients were thoroughly professional. She dealt with medical emergencies and treatments head-on and she was thoroughly focused on her role as a caretaker. In other words, it was “business as usual,” just as it became for me when I was confronted with major surgery for the first time.
In spite of the fact that prostate surgery is characterized by the medical profession as “improved,” “common place,” and “highly effective,” there is no escaping the fact that it is major surgery. Don’t let this alarm you. Develop your self-care system and do not allow yourself to panic.
If possible, schedule your surgery for late spring or early fall. Good weather will encourage you to walk very soon after surgery and you will feel more comfortable in your home.
Many issues and procedures that arise as a result of having prostate cancer require your full attention and can be emotionally draining, so look for and savor the humanity, humor, and bizarre moments – and record them in a diary.
Prior to Surgery
Go to the hospital a few days before pre-surgery tests. Locate the elevator to the floor on which the surgery will be done and other appropriate offices – then there will be no need to panic about the exact location of the hospital and how long it takes to get there.
Stock your refrigerator, freezer, and cupboard with enough easy-to-prepare foods for no more than three days. Since you will be encouraged to walk about two days after surgery – or sooner while you are in the hospital (I was in the hospital for three and a half days) – walks to the supermarket after you leave the hospital will be beneficial. Take along a friend to carry heavy stuff or have the market deliver. The canned baked beans a friend recommended never tasted so good!
Buy several pairs of loose-fitting pants – stretchy gym/sweat pants a size too large are ideal.
You will need diapers. Get a package in advance and try one on – treat this as a fun dress-up experience. Pretend you are having a Halloween party and invite a friend or your lover/spouse to join you.
When you wake up in the recovery room you will have been outfitted with a catheter inserted in your penis. Don’t let alarm you. Find out in advance of surgery what it is. Yes, a catheter is inconvenient, but it is actually useful. Urine is collected in a pouch that, for obvious reasons must be kept lower than your penis. The pouch is flat and expands as it is filled and it can be strapped to your thigh or hung next to your bed. Rig up a way to hang the bag at the side of your bed – I attached a C-clamp to my bedside table that functioned as a hook. Hospital staff will show you how to strap the bag to your thigh and drain it. There will be an elastic strap at the top and bottom of the pouch that you will wrap around your thigh. (I hope you are told to turn the pouch under at the bottom.) Apply baby powder (get this in advance if you don’t already have it) to your thigh where the straps touch your skin to avoid irritation.
The most alarming thing about the catheter is that your bladder will reject it because it does not tolerate the irritation caused by the catheter and the balloon that holds in place (refer to Marks 1999, p. 187). I was not warned about rejection-spasms in advance nor did I read about them in advance, and I panicked when I realized that urine was leaking out at the tip of my penis; it felt as if the catheter had come out, but that was not the case. The sensation is very uncomfortable but not painful. Unfortunately spasms do not let up until the catheter is removed so take deep breaths and relax when they occur. You should be given an anti-bacterial gel to apply to the tip of your penis while you are outfitted with the tube. Have a generous supply of towels available to soak up leaked urine or get a plastic-lined pad made for the mattress of a child’s crib. I coped with my catheter for two weeks; this provided ample time for the incision around the urethra at the base of the bladder to heal.
Prior to surgery my urologist/surgeon recommended the Kegel exercise. These are a rhythmic tightening and relaxing of the circular muscle fibers at the neck of the bladder and the sphincter muscles beneath the bladder surrounding the urethra that, when tightened, stop the flow of urine. These exercises may well have helped me regain full continence and had an unanticipated benefit that I will point out later.
Pack for the hospital as if you are going to a nudist colony; you will be outfitted with hospital clothing. Remove all jewelry; don’t even take it to the hospital. There is no sense in having to expose your ‘Prince Albert’. Remember to take important phone numbers.
Ask a friend or your lover/spouse to be your advocate during your stay in the hospital and ask him or her to find out when you are to be released and if you can walk out the front door. If the hospital insists on a wheelchair, don’t be embarrassed – enjoy the ride! In any case, you cannot leave the hospital alone. I would recommend a car service and not a taxicab. The cab driver my advocate and I hailed insisted on competitive driving and I had to elevate myself on straight arms to avoid bouncing on the seat. Have your advocate bring you an inflatable doughnut-shaped cushion. While sitting was not too uncomfortable, I used mine at home and took it with me to the opera, along with my external plumbing system – the experience was a hoot.
While in the Hospital
There is so much going on around you in the hospital that you will have no time to think, let alone have the ability to think clearly. Unrelenting activity made it impossible for me to get a full night’s sleep (the Xanax I asked for was minimally effective). My short stay in the hospital demanded my full attention and I could not have coped with many visitors, so don’t be shy about telling friends or family not to visit. Mobility is limited and there is no privacy and it didn’t help that I was one of four in the room. There isn’t a lot you can do for yourself while you are in the hospital in any case, it is all being done for you – hopefully expertly and with complete professional attention.
Do not hesitate to walk as soon as you are told to do so. It may seem strange at first to walk with the wheeled IV stand holding your urine and IV fluid bags, so do it with flair. I experienced no pain and found it a great relief to be on my own and mobile.
Early on, you will be asked if you passed gas and after being asked many times you will begin to feel anxious that you haven’t. There is also the annoying wait for your first bowel movement and I did not have mine until soon after I was released from the hospital. Be sure to have a home supply of a stool softener, such as Colace.
Do not be surprised if you cannot concentrate on reading, which I assume was caused by the anesthesia and physical trauma. I was not able to read or watch TV with full comprehension or concentrate on music for the next two weeks. These otherwise normal distractions were replaced by the pleasure and pride I felt in taking care of myself.
My GP suggested I hire private duty nurses, which sounded like a good idea, so I did. It turned out to be not worth the expense. The two private nurses in consecutive shifts were clearly not liked by the regular staff and their care lacked the finesse of the excellent nurses and aides on duty. Nevertheless it can be a reasonable option.
I was warned in advance that hospital food would be terrible, but just how terrible was shocking. My two private nurses were essentially not allowed to leave my bedside, which I found quite annoying, nonetheless I could not have trusted them to bring me something tolerable to eat. Put a good friend or your lover/spouse on alert for a food delivery as soon as you are allowed to have solid food, which will probably not be possible until your last day in the hospital in any case, so there is no urgency. Outside “liquid” food did not seem necessary, but it is worth asking about in advance.
At Home Alone: The First Few Days
Don’t be alarmed if you panic soon after returning to your home. As soon as my minder got me home and helped me with a bit of food shopping and went on his way, I began to shiver, my heart started pounding, and I burst out crying. It was then that the shock of what I had just experienced and was about to face hit me with full force. My panic remained high for most of the day and in less intense force for the next few days. Though understandable even then, this was the most surprising event of my recovery; one that I was never warned about, and which became the primary motivating force for me to share my experiences. It never occurred to me to request a low-dose anti-depressant medication and I functioned well enough without it. (Refer to Mark Miller, “Identity and Prostate Cancer: Comments on a Messy Life,” in Perlman and Drescher 2005, p. 127; and Vincent M. Santillo, “Prostate Cancer and Treatment of a 33-Year Old Gay Man,” in Perlman and Drescher 2005, p. 163).
For the next two weeks all I could think about was caring for myself; the rest of the world was blocked out. On some level this was one of the most purely personal, even peaceful, times of my life; another was when my partner died 19 years ago. There were no distractions from the outside world, partly by choice, except for a few close friends, some of whom joined me for walks in the park. In a very short time I began feeling my mind and body joyfully pulling itself together and healing day-by-day. Fortunately I enjoy cooking for myself and that was a major factor in my gradually improving physical and emotional well-being.
Eventually I had a bowel movement and who would have thought that it would be a significant event and one that I would write about.
The outside world eventually forced its way in, but ever since I’ve tried to keep a section of my mind clear for myself, something that I previously found difficult to achieve.
The Process of Recovery
There is probably no clear answer to the question of how long it takes to recover. The effect of anesthesia lasts a long time but its effects are subtle and difficult to recognize and can be confused with effects we associate with aging, such as difficulty remembering names and what was or was not in the refrigerator.
I was never anxious about pain, but I was relieved to see posters suggesting management consultation in the pre-surgery testing area in the hospital. It turned out that prior to my surgery I was invited to join a study of the use of a beta-blocker to reduce pain. At no point after my surgery was I in pain, and I was amused to discover that pain, aside from levels of tolerance, has various definitions or interpretations. When the representatives of the study asked if I was in pain, I did not know how to answer because I assumed they meant, “did I feel something sharp or stabbing.” What they actually expected me to describe was a sensation that I could only characterize as an uncomfortable ache, as if my bowels were tightly blocked, which in fact they were.
Removing the catheter is painless and after it is removed you may indeed miss it because you will experience incontinence, or the inability to stop the flow of urine; hence the use of diapers – they really work. Chances are that you will regain continence, but how long that will take varies considerably from man to man, and some men don’t. At some point you will hopefully be able to stop wearing a diaper and start to use a ‘guard’ that is designed to adhere to your underwear – it’s like having a codpiece and will dramatically fill out your cloth covered crotch. Take your left over diapers to a care facility for elderly men. One of the benefits of surgery, other than the obvious – the elimination of cancer – is that your flow of urine will be smooth and strong, just as it was when you were a kid and challenged in long distance pissing contests. Bowel movements also improve.
Who Are Your Real Friends?
If you are a very private person who takes care of himself and is not a complainer, you probably did not tell too many people about your cancer and surgery. Evaluate whom you did and did not tell. If there were some among those you did tell who did not respond or avoided your issue, how did you react? Why did you choose not to tell some people? Don’t feel guilty about not telling them and offer an honest explanation if challenged. A housecleaning of your address book and guest list may be in order.
During my recovery I was not in a relationship of the type in which a man would have assisted me. This may have been a positive factor in my case because it freed me to focus my caretaking onto myself and not direct it to another man who may or may not have been able to cope with the challenge. Being single allowed me to choose the people I felt comfortable with to run errands and visit.
In retrospect, I was glad that I did not need to explore treatment options and thereby learn about possible complications; which is not to say I was not apprehensive. I became alarmed months after my surgery when I read about prejudice against gay men and ignorance or avoidance of gay issues, pros and cons of the basic treatment options – simple observation, prostatectomy (radical surgery with incision or laproscopic with fiber optic instruments), radiation therapy (burning), cryotherapy (freezing), hormone therapy (injections) – and their complications, and only then did I realize that prior to surgery I could not have coped with very much of this information. I thought of surgery as a professional procedure that was to be performed by a knowledgeable and well-trained team, and this is what I experienced in all phases of treatment in what I now call Phase I. Phase II was another matter. This phase began with the process of recovery and when I was on my own and dependent on my own resources and peaked when I began to deal with sexual dysfunction. It was during this phase that reading and support groups became important.
Getting on With Your Sex Life
The Male Sexual System
Because sex as uninhibited pleasure is very much part of gay-male identity, it is essential to learn how your sexual apparatus and system works. This should be’ Sex 101’ in high school – now that would rattle conservative bones! One of the references I turned to is the revised and expanded third edition of The Joy of Gay Sex by Silverstein and Picano, 2006. First published in 1977, this remains a very useful guide for gay men, and the section “Male Sexual Response” (pp. 155-60) has a clear black-and-white illustration of the male sexual apparatus and the reader is referred also to Goldstone 1999. I will refer to these two resources in my patched-together scenario of male sex, but other sources are not named, some of which I “Googled”. I was surprised that no single source that was easily available to me as a non-medical person provided a full explanation.
Silverstein and Picano 2006, observe that “few activities involve so many different part and structures on the body as sex does” (p. 159). They start their discussion of sex with the question: “What is the primary sex organ?” This is not your cock, but your brain, characterized as a circuit breaker, and here is my summary of their discussion. Three elements determine how our brain affects sexuality. First: genetics that determine sexual orientation; second: molding by social structure; third: personal and specific experiences. Citing Masters and Johnson, there are four stages in a male’s sexual response. First: excitement; second: the plateau reached in an advanced state of arousal; third: orgasm that includes ejaculatory inevitability to the point of no return and an orgasm itself; fourth: resolution or when your body returns to its normal state. The authors go on to discuss our double nervous system: there is the central nervous system for voluntary movements such as with skeletal muscles and those that affect audio and visual stimulation; and there is the autonomic nervous system for involuntary responses of internal organs such as breathing and maintaining body temperature and the responses in our genitals. The autonomic nervous system has two subsystems, for example, one that speeds up the heart rate (sympathetic) and another that slows down the heart beat (parasympathetic) – both interact with erections.
The biological function of male sex is to impregnate a woman so that sperm fertilizes an egg that develops into a fetus. Sperm travels from both testicles, where it is made, through tiny tubes – the vas deferens – to the upper ends of the seminal vesicles, two glands at the base of the bladder. It is here that fructose, a sugar to nourish the sperm, is added, as well as an enzyme that clumps into globs that stick to your belly (Goldstone 1999, p. 125).
The function of the walnut-sized prostate gland, located just below the urinary bladder, that surrounds the urethra (the tube that leads from the bladder through the prostate, past the urinary sphincter and out the penis ending in a slit through which urine and seminal fluid pass) is to produce enzymes that liquefy the mass holding the semen. During sexual stimulation, semen collects in the ejaculatory ducts where the vas deferens from both testicles join the seminal vessels and mixes with secretions of the prostate. The secretions of the prostate comprise about a third of the ejaculate, giving it its whitish color (Zilbergeld 1999, p. 57).
Erection begins with sensory and mental stimulation and occurs when blood fills two cylindrical chambers that run the length of the penis parallel to the urethra. These two cylinders of spongy tissue surrounded by a tough fibrous covering fill most of the penis. In a healthy male, the spongy tissues become engorged with blood during sexual excitement, causing the penis to expand. As the spongy tissues fill with blood, they push against the fibrous sheath, making the penis hard.
What is known as precum is a fluid produced by the pea-sized Cowper’s gland that functions separately from the prostate.
The scrotum and testes undergo some interesting changes during sex. The skin of the scrotal sac thickens and contracts, while the testes increase in size because of the engorgement of blood. The testes are also pulled up within the sac until they press against the wall of the pelvis. This elevation of the testes anticipates ejaculation and is necessary for it to occur (Zilbergeld 1999, p. 61).
When a climax is reached, a spinal reflex causes contractions to the muscles in the penis, urethra, and the prostate, thereby pouring their contents into the urethra to be propelled or ejaculated out through the tip of the penis. Contractions are the beginning of ejaculation and nothing can stop it once the point of inevitability is reached. Ejaculation is a total body response involving a complex series of minute actions, and isn’t it a shame that a gland the size of an ordinary walnut can cause devastating havoc for what is set up to be a hugely pleasurable experience. Ejaculation is the physical part, the propulsion of seminal fluid or cum. Orgasm is the peak feeling in sex that in men usually occurs during ejaculation, but not always.
Helpful diagrams of the glands of the male sexual system can be found in Sheldon Marks 1999, “Anatomy and Function of the Prostate Gland,” pp. 2-6. The sequences of sexual responses are not described.
Now for the hard part of Phase Two: the temporary or permanent loss of an erection that is the result of treatments for prostate cancer.
Removing the prostate eliminates the possibility of an ejaculation (as Dr. R said: no mess), but there is an orgasm. Sperm that is produced is absorbed into the testes. Referring to “The Ups and Downs of Gay Sex After Prostate Cancer Treatment” by Stephen E. Goldstone, M.D. in Perlman and Drescher 2005, p. 46: “The universal complication after radical prostatectomy surgery is the failure to ejaculate. When the surgeon removes a man’s prostate, the muscle that closes his bladder allowing his ejaculate to more out of his penis rather than back into his bladder is destroyed…. While still perfectly capable of experience an orgasm, no ejaculate comes out.” This won’t be the sort of orgasm that you are familiar with, but one that seems to grow and be contained deeper within you. An orgasm takes place in the brain and is not eliminated by loss of the prostate. This brings us back to the important role of the nervous system in sex and emphasizes the need to relax before trying to achieve an orgasm with or without an erection. For many of us this requires a bit of adjustment, so evoke the components of romance. Fortunately, a radical prostatectomy does not affect the anus or rectum. For another perspective on this issue, see “Prostate Cancer and Sex” by Roberto Martinez in Perlman and Drescher 2005, pp. 93-96.
Sheldon Marks (1999, p. 233) defines “impotence” as the inability to achieve and sustain an adequate erection for sexual intercourse, and “erectile dysfunction” (ED) as the ability to achieve an erection that may not be as adequate as you might prefer. (ED refers to erection function only.) Reduced ability to achieve an erection and maintain it is certainly frustrating and at times may seem hopeless. My doctors as well as my therapist insisted that I not ignore this issue. Ask your surgeon whether some or all of the nerve bundles on each side of the prostate were spared during surgery (you should have been told this). These bundles of nerves play a crucial role in the retrieval of your erection and if they were spared, it will take time for them to recover.
About four months after surgery and as I began dealing with ED, I became aware that there are varying satisfactory degrees to which my penis could and would be filled with blood while not becoming fully erect. It was not necessary to be fully erect to play with my cock and enjoy a blowjob or have my playmate enjoy what he was doing.
My plumbing system confused urination with blood swelling the penis. Finding the pleasure and bits of humor in this became a challenge, so I stood over the toilet or bath tub; went into the woods; gathered together used towels and kept them close at hand; or, as my patient friend/playmate suggested, protected my sofa and bed with the plastic-lined crib mattress-cover. The urge to urinate and the sensation in the tip of my penis made me feel like I needed to urinate, but the sensations were unpleasant. Blood swelling the penis at some point begins to override urination, so don’t give up.
Assistance in achieving an erection is available in several forms, such as the now much-advertised Viagra, and the lesser advertised Levitra and Cialis. Each has its advantages and disadvantages. I suggest you try them all but be aware of necessary safeguards.
Another product is Muse, a urethral suppository. Being shown how to use it was a now-savored, bizarre experience. While I do not think of myself as being particularly prudish, a frank discussion with my straight urologist about an erection was in order and I approached it with some apprehension. Imagine being in a sterile brightly illuminated examination room with your urologist who guides you through the process of inserting a thin rod containing the magic potion into your penis and who has to himself – hands on – show you how to complete the process and then leaves you to rub your member for 15 minutes before he returns to check on the results. Results were positive and my only option after the doctor completed his paper work and left the room was to put on my pants, zip up, walk out of the office, and enter the subway with a silly grin on my face. Too bad the car I was on was not packed to body-crushing capacity – I was not inclined to flash! Muse left me feeling swelled and a bit achy, but not unpleasantly so, and as far as I am concerned is a much better option than injecting a drug into my penis using a needle, although this has been described to me as a simple and painless procedure.
Unfortunately the insurance system is extremely parsimonious about reimbursing erection-enhancing products. This is very silly because in my/our case these are not recreational toys but legitimate physical and emotional recovery techniques. Is this yet another result of living in a culture that denies that it encourages sex for pleasure? One way around this is to pay full price and wait out the required amount of time between refills of a prescription.
A cheaper way to get blood to flow into the penis is to use a vacuum pump, but this has limited application and I have been warned that using it can damage blood vessels.
For a clear and concise discussion of treatments for impotence, refer to Marks 1999, “Impotence – Causes and Treatments,” pp. 233-49.
For a very good diagram of the bladder, prostate gland, testes, vas deferens, etc., and a discussion of erectile dysfunction, refer http://malecare.com/prostate-cancer_42.htm . According to the University of Pittsburgh Cancer Institute:
“Even if the nerve bundles are not removed during radical prostatectomy, they may still sustain damage and are very slow to heal. However, even if the bundles are not injured during surgery, some men will experience erectile dysfunction afterward; the reasons are unclear. Another common reason for difficulty with erections is that the veins of the penis may have suffered trauma during surgery and are unable to keep blood trapped inside the penis.
Before sharing how I dealt with erectile dysfunction caused by surgery, it is worth considering a few factors that inhibit an erection in general. Zilbergeld 1999, p. 64, offers this pertinent observation: “Erection requires a whole constellation of things to be right. Your nervous and vascular systems have to be capable of responding properly, and your emotions have to be capable of aiding or at least not impeding the process. Anything, physical or emotional, that gets in the way of sufficient blood getting and staying in the penis can cause problems.” Later in his book he continues: “There are a host of drugs that contribute to erection problems (p. 304). Alcohol, for example, is a central nervous system depressant: “Social drinking… may inflame desire but kill erections.” The author also notes: “Smoking contributes to hardening of the arteries, including the ones that supply blood to the penis. Smokers have far more potency problems than nonsmokers” (p. 305).
The appendix to Zilbergeld’s “The Effects of Drugs” (Zilbergeld 1999, pp. 373-88) is prefaced: “The issue of drug effects on sexuality is complex….