June 2004

Erectile dysfunction (ED) most often has a physical cause and today, thanks to Viagra, Levitra, Cialis, and other non-oral treatments, the physiological aspects of ED can be treated successfully. However, without also addressing specific issues of intimacy between a couple, a critical component of a man's emotional and sexual life, these treatments will take that man only so far. Sex involves two people whose feelings must also be recognized. Many men often shy away from talking about their sex life in general, and ED in particular, for a variety of reasons, including embarrassment, frustration, even fear. When a sex life has problems, emotional estrangement can quickly occur. Dealing with the problem, in all its complexity, is the only way to assure that the problem is solved to the mutual satisfaction of both partners.

Without an emotional connection to your sexual partner, you won't develop the deep, satisfying awareness that defines great sex. For those of you who took your sex lives for granted prior to your cancer, this is a golden opportunity. Not only do you have available the means to restore your sexual function, but by talking to your partner about your sex life together you can also bring new emotional perspective to your relationship, creating a stronger, more resilient bond that will enhance your sexual experiences as well as those of your partner.

Facing the many psychological reverberations that ED causes in men and their partners after a prostate cancer procedure is a very important part of treating the condition successfully, which is why sexual counseling can play a critical role.

Q. What are the best ways to initiate change in one's sexual relationship?
A. Talking with your partner is the biggest step you can make since it's never easy to admit that your sexual relationship needs help. Modifying it takes work and time, but knowing those areas that are giving you and your partner trouble will make it easier. You always need to keep the lines of communication open. It's paramount that you speak frankly with your partner about your condition. Be honest about your feelings, sexual needs, and desires. If you both come to agree that counseling is the right course, your partner needs to be part of the process.

Q. When does someone need counseling?
A. When it starts to hurt too much emotionally, whether it is the man or his partner. The earlier a couple seeks counseling, and I like to see couples, the better the results will be. Most of the patients I see have had their local treatment 9 to 18 months before. In that period, the first nine months especially, the couple was being patient but then when the erections did not return as before, they began to get worried and wanted answers. If you find that you cannot satisfactorily resolve your problems, I urge you and your partner to seek additional help. Hopefully, you will find that sexual counseling can be an effective way to strengthen and deepen a relationship while regaining lost pleasure.

Q. What type of medical professional should a couple seek?
A. If there is a department of sexual health connected with the psychiatry or urology department at a major teaching hospital, call and ask for a referral. If not, check your county medical society or state psychological association. You want a mental health professional that is experienced in sexual dysfunction and related disorders, and has treated post-surgical and post radiation prostate patients or has had some experience with patients with a chronic illness.

Q. How long do you recommend that a couple stay in counseling?
A. For the uncomplicated post-treatment couple, with the strengths and weaknesses of most couples, I would estimate about two to three months of weekly sessions. I describe the therapy as an ongoing retreat, a period that will allow them to work closely together. It's a privileged time where they can step back, reassess, and see what they can do to make things better.

Q. What is the general emotional state of the male undergoing counseling?
A. The Hopkins prostate cancer patient already understands that the surgeon has three major goals, in the following order: stop the cancer, prevent incontinence, and spare sexual function. Patients are aware of this. The couple that has had minimal sexual activity will not be too traumatized at the loss of erection. However, if sex played a significant part of their relationship, it will be a much greater loss and require more counseling.

Q. What are your goals as a therapist?
A. What I hope will happen is the creation of as much intimacy and sexual expression as possible between the couple. Even if it is not possible to achieve sexual intercourse, it is still possible for sensual pleasuring to take place and I make this clear to the couple. If the man had previously thought that sexual intercourse was the end point in a sexual relationship, I invite him and his partner to now write new sexual scripts for themselves. This works to diminish sexual estrangement between the couple.

Q. What type of medical professional should a couple seek?
A. If there is a department of sexual health connected with the psychiatry or urology department at a major teaching hospital, call and ask for a referral. If not, check your county medical society or state psychological association. You want a mental health professional that is experienced in sexual dysfunction and related disorders, and has treated post-surgical prostate patients or has had some experience with patients with a chronic illness.

Q. Is it difficult for a man to review his sexual history with a therapist?
A. Most couples have difficulty talking to each other about their sexual life. Granted, they can talk about sex in general, for example, sex in the news, but when it comes down to the man and his partner, it's often a challenge to talk about their sexual wishes and concerns. Therefore, it really comes down to the level of comfort that's established by the therapist with the couple. "I'd like to get an understanding of how sex has been for both of you," is a typical non-threatening question asked of the couple in the first session. With each one answering in turn, an easy dialogue is created that should carry over for the rest of the meetings.

One of the things I ask couples soon after we've met for a few sessions is why they have intercourse. "Pretend I'm from Mars," I'll say. "Why do you humans do this sex thing?" Oftentimes, through this ensuing dialogue, the couple comes to realize that it's more than an erection, more than orgasm, that sexually attracts them to each other. I will ask the man and his partner to look inward and bring out into the open issues that may have been waiting beneath the surface. To make their bond stronger, to create a trusting atmosphere that will foster growth, to progress to a mutually-fulfilling relationship, the couple has to find out how each one really feels about sex. This can encompass everything from the meaning of sex in their relationship, and their reactions to utilizing ED therapies, to their degree of personal sexual satisfaction, identifying sexual problems, and anxieties related to intimate matters.

Q. If sex was a big part of a relationship, will the relationship be permanently broken if erections don't return?
A. Sex is frequently made to carry more of an emotional burden than it should. A therapist has to first see how the couple is handling the death threat imposed by the cancer. This means that the couple has to come to terms with what the cancer has done to their lives. Even though the prognosis is often good following a radical prostatectomy or radiation treatment, 99.9 percent of the couples are still jarred by a cancer diagnosis. A woman has been forced to picture herself as a widow, while the man has had to come face to face with his mortality. A couple that comes in for counseling may be totally focused on their sexual life and don't typically say they're suffering from the angst of dealing with mortality. It must be recognized in order for true healing to take place. They then need to be able to find joy in their lives together again. They need to be grateful for the days, for the time that they have together, taking the baseline that is there in terms of intimacy, the emotional as well as sexual, and build on it to make it even better.

Q. How do you counsel the man who is devastated by his inability to get an erection?
A. If the man is really depressed about his inability to achieve an erection, then he will need special care. Treatment for this depression includes medication, counseling, or a combination of both. These treatments not only improve behavior and mood, they also reduce suffering and enhance quality of life. Family and friends are usually the first to notice the changes in behavior and mood, and should encourage the man to seek the evaluation of a doctor or mental health professional when symptoms are severe or last for two weeks or longer. Some symptoms to look for include a persistent sad or 'empty' mood, loss of interest or pleasure in ordinary activities, fatigue or loss of usual energy, sleeping problems, including insomnia, early waking or oversleeping, loss of appetite or overeating, difficulty concentrating, remembering, or making decisions, and feelings of guilt, worthlessness or helplessness.

Q. Does the difficulty or inability in achieving an erection bring about a sexual reawakening in some men?
A. Yes, it does. Some men have been so intercourse-oriented that they never really understood the power of romance and what intimacy really meant for their partner. Without being able to have an erection or to sustain one as before, they soon come to realize that something as simple as a hug or gentle back rub or massage helps firm the intimate bond between the couple.

Q. Is it difficult to convince a resistant man to create new sexual scripts?
A. ED is really a couple's issue. It's a question of the couple being educated about various options and then, being respectful of their esthetics and values, having them understand that they are being given permission to broaden the sexual scripts, to have more variety than there might have been. The couple has to come to realize that it's this sensual pleasuring of each other that can preserve, restore, and enhance the intimacy between them.

Q. What have been the typical responses from patients after completing a full counseling session?
A. Uniformly, they are grateful for having done it because communication and intimacy have improved. How things actually work out sexually, depends on the pre-cancer sex baseline, how often and how satisfying sex used to be, and secondly, the effects of the treatment on their sexual performance. Even if there is not a return to baseline, I think most couples feel the counseling is extremely beneficial because it helps cement their intimacy and lets them come to terms with their new physical reality.

May 2004

"You can get all the information you need, but ...

…………when it comes to what it’s going to do to your marriage, you're on your own, and I don't have any doubt that this adds considerably to the level of anxiety on both sides”. This is a citation from Michael Korda’s book “Man to Man, Surviving Prostate Cancer”, one of the other books on prostate cancer.
   We are all familiar— at least we ought to be familiar—with books such as “Dr. Walsh’s Guide to Surviving Prostate Cancer” or “A Primer on Prostate Cancer, An Empowered Patient's Guide” (by Stephen B. Strum, M.D. & Donna Pogliano). Those books give exquisite technical detail but are of limited help in the discussion of impotence, the subject that men find most difficult to talk about.
   Korda writes in his book that prostate cancer will try your soul and the soul of the partner who loves you, but when faced “courageously—and people have more courage, generally speaking, than they give themselves credit for—it can strengthen a marriage and, surprisingly, show you that not only is there life after prostate cancer, but that the best may still be to come.”
   Korda had prostatectomy, but his words are also true for other treatments of prostate cancer. And returning to the nitty-gritty of our disease, it remains a good thing to be well informed about new developments. Therefore, page 3 gives some information about a new application of Viagra, namely restoration of the erectile nerves after treatment for prostate cancer.

“…at the very least, there ought to be some discussion of the issue of impotence…”

Michael Korda: Man to Man, Surviving Prostate Cancer (1996)

    Before and after prostate-cancer surgery, as I would discover, are different worlds, and you cannot imagine the second when you are still in the first.
    Thanksgiving weekend Margaret and I spent together quietly, trying not to think about what lay in store for both of us. I had no doubt that Margaret’s role would be as difficult as mine―perhaps in some ways more difficult, because everyone's attention is naturally focused on the patient's problems, whereas the fears, problems, and feelings of the patients spouse or companion go largely ignored. It's not just that sickness often results in a reversal of roles―the strong person in a relationship may suddenly become the weak one, the caretaker needs caring for, the person who has always looked after things now needs looking after, and so forth―it also creates feelings that can't be acknowledged, that can't, perhaps, even be admitted to oneself.
    It's hard to argue with a man who has cancer, and even harder to be angry with him, and yet women often do feel anger, inevitably―anger that their lives are being upset, anger at being abandoned, however innocently; for serious illness is a kind of abandonment, in which the patient becomes totally immersed in his own case, in his own health, his own needs.
    "How could he do this to me?" is what a lot of women must feel, yet they cannot say it out loud, or even think it, without feeling guilty. Fear—fear of the unknown, fear that he's going to die, fear that even if he doesn't die he will emerge from all this a different person—breeds anger, as fear always does, made stronger in this case by the fact that it can't be expressed.
    It's strange, I think, that nobody has written about this side of prostate cancer. Surgeons—mostly men, since urology remains a largely male specialty—ignore it completely. In their view, the woman's role is to be supportive during the surgery and caring afterward, part cheerleader, part Red Cross nurse. To judge by the books on prostate cancer and the advice to patients handed out prior to surgery, one would suppose that every marriage is a bedrock-solid equal partnership, but in real life this is hardly always the case.
    The truth is that prostate cancer inevitably involves the most difficult and frequently unresolved areas of a relationship. The direct threat to a man's sexual identity and ability to perform can hardly fail to have an effect on the relationship. Women must ask themselves how impotence, if it results, will affect the relationship, how they will feel about it themselves, how it will change things. Questions are likely to include: "What will he be like if he can't have sex?"; "How will I feel about that?"; "How will we handle it?"
    It goes without saying that men who can talk to their wives freely about their innermost feelings and fears, not to mention their sexuality, will do better in facing the problems of prostate cancer than those for whom this is not the case, but, frankly, how many people can say that about their marriage? Mostly, these are exactly the subjects that men find it difficult to talk about and share with their wives. The mere fact of being diagnosed as having prostate cancer is not likely to transform the average husband into a sensitive, articulate man, eager to discuss his darkest fears at length with his wife. ..
    You can get all the information you need—though it takes some doing—about Gleason scores, the different ways of attacking the disease, and so forth, but when it comes to what it’s going to do to your marriage, you're on your own, and I don't have any doubt that this adds considerably to the level of anxiety on both sides. ..
    Such questions as these are normal; prostate cancer by definition touches what is likely to be the most sensitive part of any marriage—the sexual relationship—and in the weeks before the surgery, if you are taking the surgical route, there are going to be a lot of strong emotions going on under the surface. Some men may feel a regret for opportunities they turned down; while both women and men alike may wonder what will become of the marriage if the man loses his potency. Blame, fear, mixed emotions, regrets—it is important to recognize that all these are legitimate feelings in the face of something that is certainly going to change your life, either temporarily or permanently. There is a value to smiling through it bravely—the famous stiff upper lip—but that should not preclude a couple's ability to face all this emotional distress squarely. At the very least, there ought to be some discussion of the issue of impotence, which is the thing that most men are afraid of (death tends to run a close second). Not talking about the possibility is a mistake.
    In my case, I made sure that Margaret read all the material about impotence in the books I had found, however reluctant she was to do so. We naturally hoped this would not be the outcome, but at least we knew and understood what could be done about it if it did happen, as well as what would be acceptable to both of us in the way of sexual aids (about which, more later). Once you've talked about it frankly with your partner, you can put the possibility of impotence in the back of your mind rather than letting it become an obsession.
    You cannot leave this to your doctor, or expect that a busy surgeon is going to have the time to transform himself into a marriage counselor or sex therapist—besides which, the recommendations of a man, in this area, may not make any sense at all to a woman. The mere fact that urologists operate below the belt, in the region of desire, does not necessarily convey any special understanding of sexuality, or sympathy toward women—indeed, some urologists have a tendency to think of the sexual organs in terms of "plumbing," and many of their solutions for sexual difficulties involve more surgery and the implantation of prosthetic devices, ignoring the fact that couples can very often find their own ways of dealing with these problems. In any case, a woman's view of what is desirable in this area may be very different from a man’s, let alone a male surgeon’s.
    The period before surgery will determine more than anything else (except perhaps the surgeon’s skill) the speed with which the patient will recover and how he will feel about it. Expect quarrels and disagreements, by the way—volatile issues are at stake. Ignore the Goody Two-Shoes approach that presumes a little good sex and handholding are all it takes to prepare for what's to come. What's needed is a strong, united front—and a realistic, clear-eyed approach to the problems that may follow surgery.
    Be assured, prostate cancer will try your soul and the soul of the partner who loves you, and subject your marriage to the acid test of facing some of life's more difficult problems. Faced courageously—and people have more courage, generally speaking, than they give themselves credit for—it can strengthen a marriage and, surprisingly, show you that not only is there life after prostate cancer, but that the best may still be to come.

Viagra May Repair Nerve Damage

The Wall Street Journal, Health Journal, May 11, 2004 (by Tara Parker-Pope)

For many men, the biggest fear about prostate cancer treatment is whether it will render them impotent.
    But now researchers are studying several ways to preserve a man’s erectile function after prostate cancer. Treatments ranging from regular Viagra before and after surgery to experimental drugs that protect, regrow and replace delicate nerves all are being studied. ..     Even in highly skilled hands, prostatectomy can leave between 20 and 50% of men with significant and long-term erectile dysfunction, depending on the man’s overall health to begin with. Non-surgical treatments for prostate cancer, like radioactive seeds and hormone therapy, can also take a devastating toll on man’s erectile health. ..
    Some studies are trying to determine whether taking regular doses of Viagra both before and after treatment can lower a man’s risk for impotence. Viagra, which increases blood flow to the penis, already is widely used to treat impotence. The difference here is that the drug is being taken several times a week in hopes of preventing problems or to restore erectile function, rather than to simply help a man achieve a one-time erection.
    In a study presented May 10, 2004, during the American Urological Association annual meeting in San Francisco, researchers followed 54 men who had undergone nerve-sparing prostatectomy.
    The study, which was funded by Viagra-maker Pfizer, showed that 29% of men who used nightly Viagra for nine months showed significant increases in erectile function and nocturnal erections compared with just 5% of patients on placebo. What was surprising, however, is that the men returned to normal sexual function even after stopping the drug. The results indicate Viagra had a rehabilitative effect and may help repair nerve damage, said Harin Padma-Nathan, clinical professor of urology at University of Southern California Keck School of Medicine.
    Researchers at Fox Chase Cancer Center in Philadelphia are studying whether Viagra makes a difference if taken after both radiation and hormone treatments. Another study is looking at whether Viagra given before radiation treatment can prevent problems. The week before treatment the men take the drug at least three times, and continue taking the drug for a month after treatment. In addition to me improved blood flow to the penis,
    Viagra may give men dealing with cancer a needed psychological boost, said Deborah Watkins-Bruner, director of the center's prostate-cancer risk-assessment program. "After treatment men are afraid it's going to hurt, and they're afraid of failure. This can help men overcome any psychological issues."

April 2004

Significant or Insignificant Cancer
From Johns Hopkins’ Dept. of Urology’s Cancer Update, Winter 2003 (http://urology.jhu.edu/news/6/8.html)
 

Twenty years ago, most men diagnosed with prostate cancer had advanced disease. Only about 25 percent of men were diagnosed with cancer that appeared to be confined within the prostate—and of those, only about half actually had curable disease. Today, the story is nearly reversed: 75 percent of men diagnosed with prostate cancer have clinically localized disease, and at least 80 percent of them are curable…

Today, some men are found to have minuscule amounts of cancer—smaller than 0.2 cubic centimeters, about the size of a pinpoint, captured by sheer chance during a biopsy. For some men, these are cancers that will never cause harm, and ideally, should never have been diagnosed. Which leads to a treatment dilemma: If this kind of small-volume cancer is diagnosed, what should happen? To treat, or not to treat? What should a man do? For some men, these are cancers that will never cause harm, and ideally, should never have been diagnosed.

This is the kind of problem urologists —who, for so many years, could only diagnose prostate cancer when the chance of cure had become uncertain—have always dreamed of having. It’s also, increasingly, a clinical challenge. Exactly which kind of cancer is it—the “good” kind, that seems content to remain in the prostate and never causes harm, or the kind that will be less indolent over time, and needs to be nipped in the bud?

“To what extent are we diagnosing and treating a disease that would progress very slowly, and never threaten a man’s life?” asks urologist H. Ballentine Carter, M.D., who is also a professor of oncology at the Kimmel Cancer Center. “For which men is surgery necessary, and which men can safely forego treatment?” …

There’s also the matter of a man’s age, Carter notes. “In a very young man (in his thirties, forties or fifties), a very small tumor might be significant. But in an older man, a very small tumor probably isn’t significant, because of the time it takes for that tumor to grow and become dangerous.” Even without treatment, cancer that is fairly well-differentiated (to the pathologist, this kind of cancer cell looks fairly normal, or not terribly abnormal), Gleason 6 or below, and localized to the prostate, takes more than 10 years to spread and cause harm.

Thus, “for men who are in their sixties or older, we feel that if we can identify who has low-volume disease, then expectant management may well be a rational approach.” For the last few years, Carter and Epstein have been studying this strategy in men with stage T1c disease. Their results, published in the Journal of Urology with Patrick C. Walsh, M.D., and Patricia Landis, were so encouraging that a larger trial, involving several institutions, is in the works.
In this study, 81 men who fulfilled the criteria for low-volume disease were followed. At an average of two years’ follow-up, 25 (31 percent) had progression of disease. In 22 of these men, every follow-up biopsy showed cancer. In the men who had progression of cancer, PSA density was significantly higher, and free PSA was lower. Thirteen of these men underwent radical prostatectomy, and 12 (92 percent) had curable disease….. “Because the follow-up is short-term, we can’t say that this is an absolutely safe approach,” says Carter. “We think it is, but we’re still trying to learn. What we do know is that the potential here is very exciting, because we may save a lot of men from surgery that they don’t need.”

Dr. Epstein’s Criteria for Stage T1c Treatment:
Stage T1c cancer is significant if…
- It’s found in three biopsy needle cores, OR
- It’s present in greater than half of any one biopsy needle core, OR
- If the Gleason score is 7 or higher, OR
- If the PSA density is greater than 0.1-0.15, OR
- If the free PSA is less than 15 percent.
Stage T1c cancer is probably NOT significant if…
- It’s found in only 1 or 2 needle cores, AND
- It makes up less than half of each needle core, AND
- The Gleason score is 6 or lower, AND
- The PSA density is less than 0.1-0.15, AND
- The free PSA is greater than 15 percent.

Significant or Insignificant Cancer – What to Do?

The $60,000 question raised on the previous page is: For which men is treatment necessary, and which men can safely forego treatment? Fortunately, few men diagnosed with prostate cancer have to make a decision on the spot. Most of us can postpone that decision. Robert Young was an exception. With a PSA of over 1,000 and a positive bone scan, hormonal therapy was administered immediately. Most men can postpone a decision for months, even years. During that time they will be on watchful waiting (WW), but we think that they should be on AWW: Agressive WW. Diet modifications involve eating less fat, more vegetables, fruit and fish, and the use of supplements like vitamin E, lycopene, and selenium. The PSA is monitored regularly.

But there is another important aspect of AWW: one has the time to learn what is meant with terms such as those used by Dr. Epstein in the previous article. For example:
-----How many of newly diagnosed men know how much cancer was found in their biopsy cores?
-----How many know that pathologists can make errors and that a second opinion on the pathology report (based on the same biopsy material sent to an eminent pathologist experienced in reading prostate cancer biopsy slides) is an important step in staging and is generally paid for by insurance? This is particularly important for men with Gleason scores 6 & 7.
-----How many men know what is meant with PSA density? PSA density can be compared to the BMI, Body Mass Index. A weight of 200 lbs is different for a 5’ man than for a 6’ man: the former is obese, the latter has a normal weight. PSA density is PSA divided by the prostate volume (in cm3). A PSA of 5 means something different for a man with a large 50 cm3 prostate than for a man with a small 25 cm3 prostate. Each TRUS (transrectal ultrasound) report that accompanies a biopsy should include a statement about the prostate volume.
-----How many men know their % free PSA? This percentage should be determined for any man who may have insignificant cancer. The free PSA may be more or less than 15% (see previous article).

During AWW the PSA must be measured repeatedly. An important prognosticator, the PSA doubling time (PSADT), can be calculated from successive PSAs. In a series of 231 WW patients the median doubling time was 7 years; those with a PSADT less than 3 years were offered local therapy (Klotz, L, Clin. Prostate Cancer, 2003, Sept., p. 106-110, abstract).

In another article, published last month, Dr. El-Geneidy (BJU Int. 2004 March, p. 510-515, abstract) describes 187 patients diagnosed between 1993 and 2000. They all went on WW, and 38 patients (22%) received delayed treatment: 15 RP (radical prostatectomy), 17 EBRT (external beam radiotherapy), and six brachytherapy.

Why was delayed treatment chosen by these 38 patients? The choice was based, in order of significance, on their age (p<0.001), PSA doubling time (p = 0.018), and the percentage positive cores (p = 0.022). Notice that the Gleason score was not a predictor of delayed treatment, and neither were PSA density or percentage of free PSA.

In our opinion the disease management strategy for many men diagnosed with prostate cancer is on more solid ground if the diagnosis is followed by at least a few months on AWW with regular PSA tests.

We encourage all prostate cancer patients to be knowledgeable about their disease. Learn the basics, ask questions, read the literature, use the Internet, and you will find yourself much more at ease in your communication with physicians. Stress and depression are common after diagnosis, but we think that self-empowerment of the patient through knowledge can be an excellent remedy.

Kees DeJong, Jerry Glenn, Stan Moczydlowski, Steven Plymire, Jack Ramsay, Fran Stanton, Steve Steiner, and Tom Young