Prostate cancer ? the patients' perspective ? Irish Medical Times

The feedback from men at the conference was that they are given very little information, particularly about the sexual side-effects of prostate surgery

Galway GP?Dr Mary Rogan explores the potential sexual problems patients can experience following prostate surgery and what doctors can do to help them.

The inaugural conference of Prostate Support and Awareness Ireland, (PSA Ireland) run by East Galway Cancer Support, took place on April 20. This excellent group of volunteers has given great hope, both emotional and practical, to men who have survived prostate cancer but have suffered and are suffering the sequelae of surgery.

The conference, entitled ?Prostate Cancer ? A Patient?s Perspective?, was attended not only by men and their partners from the catchment area of the group, but also from all over Ireland. The group has produced a DVD, which was featured on RT??s Nationwide programme and ran a very professional conference in Gullane?s Hotel, Ballinasloe, on a shoestring.

A cancer diagnosis is devastating. Having received such bad news, and being advised to have surgery, how can we as GPs support our patients who find themselves in this situation? The feedback from men at the conference was that they are given very little information, particularly about the sexual side effects of prostate surgery, which is my area of interest.

Poor after-care

They felt that they got very good information and support during the initial stages of the diagnosis and treatment. However, once they went home, the after-care was poor to non-existent. It is my belief that the lack of training in, and comfort with, discussing potential sexual problems after surgery among the medical and nursing profession is having a very negative impact on this large group of patients. A New Brunswick study carried out in 2010 confirmed that this happens not just in Ireland and is a problem that needs to be addressed (Letts, Tamlyn and Byers, 2010.)

The attendees at the conference were predominantly male, with a smaller number of females. This could have been accounted for by the fact that some were widowed or separated, but the disparity in proportion of males-to-females was against the usual trend, where women are better attenders.

The speakers at the event included psychologist with Galway Cancer Care, Dr Helen Greeley, Radiation Oncologist Prof Frank Sullivan, Urol-ogist Mr Eamon Rogers, physiotherapist Beatrice McGinley, and I spoke as a psychosexual therapist.

Reduced libido

Themes emerging from the conference and the workshops which ensued included the following: Among women, the predominant theme was relief at the survival of their partners. They also had in common a lack of libido, partly attributable to the worry and workload of looking after a partner with cancer and from menopausal symptoms, particularly vaginal dryness and sweats. The existence of reduced libido in the women reflects the worldwide trend of diminishing libido in women after establishing long-term relationships and childbirth. (Bettina Arndt, The Sex Diaries, Melbourne University Press, 2009).

The predominant theme among the men present was a continued wish for the ability to be sexual. Some felt that it would not be possible to continue to have satisfactory sex without erections, others were happy to explore the possibility of non-penetrative sex and physical closeness, including orgasm with a soft or semi-erect penis. The only men who reported lack of libido were those who were chemically castrated. All of the men who spoke wished to be sexual again.

We are sexual beings. Like all living creatures, we need sex to reproduce. Unlike the animals, however, human beings can choose when to be sexual and find sex pleasurable. Even foetuses in the womb have been observed apparently pleasuring themselves.

Professional advice

As family doctors we are supposedly the experts, but some of us may give the impression that we consider it somehow beneath ourselves to discuss the sexual side-effects of surgery with patients, thus denying them the only avenue they feel they can explore to restore their sexual function. All of the men who spoke at the conference stated that their family doctor was the one who they felt could best explain the reason for their problems, give them advice on how to deal with them, and were the people they felt most at ease with in discussing their difficulties. However, among consultants, nurses and GPs, there seemed to be a difficulty in giving these men information on, and help with, sexual dysfunction.

Each of those men, whether single or part of a couple, had faced change. Increasing age can cause erectile problems, and indeed although men in their 20s don?t normally have vascular problems or other physical challenges, which cause problems with erections as a general rule, I see far more young men with erectile dysfunction (ED) attending for sex therapy than I do older men. To quote Robin Williams: ?We have a brain and a penis; pity we don?t have sufficient blood supply to run both at the same time?.

Erectile dysfunction

It?s important that men with ED following cancer surgery be aware of this; it will help to normalise their experience, which unfortunately most of them seem to think they are alone in suffering. It is also important that they are aware that sex begins in the head, and that intimacy is a vital ingredient in any sexual relationship.

Most men suffering the sexual consequences of prostate surgery are in a close, intimate relationship, and therefore have what is in my opinion the most important elements necessary to re-establish their sex lives. Sexual desire begins in the head, grows out of intimacy and with sensual contact, moves on to arousal. Following cancer surgery, they may not have erections. It is important, however, that they know that they can enjoy the sensual contact, the arousal, and that they can actually orgasm without an erection. They will not ejaculate but they can have the pleasurable sensations and muscular contractions that go with the orgasm. Their erogenous zones may have changed, but patience and gentle exploration and experimentation can reveal new hotspots.

The American psychotherapists Barry McCarthy and Michael Metz have published widely on how men may deal with erectile dysfunction. Their book, Coping with Erectile Dysfunction, is an excellent, easy-to-read, self-help book which is very useful for patients and also for family doctors. It is widely referred to by psychosexual therapists.

Another publication by McCarthy and Metz, entitled Enduring Desire, is useful not just to cancer survivors, but also to our other patients and to ourselves. It introduces the concept of ?good enough sex?.

Embracing change

This reminds us that change occurs in everyone?s life, including everyone?s sex life. Appreciation of, and acceptance of this change, are important.

It?s important that we value ourselves, our bodies and partners? bodies. Intimacy is vital, the couple being an intimate team and working towards a satisfying sexual relationship. Information is essential, as is the knowledge of how age illness and medical intervention can change the way a sexual being operates.

It?s important to stay healthy and to be relaxed ? arousal is more likely to occur if we are relaxed. Each of us needs to accept that not every sexual experience will be the same, and we need not to give ourselves ?marks out of 10? for strength of orgasms or length of intercourse. The quality of sexual experiences will differ ? life would be boring if it didn?t.

McCarthy and Metz advised that not every sexual encounter needs to end in penetrative sex. This information can be of great comfort to men with ED following prostate cancer.

We all need to know that the use of sensuality is important. It?s good to remember that men and women function differently in a sexual sense, women being more like an electric oven which takes time to reach the required temperature, when men are like a gas oven, becoming hot immediately. It is a fact that sexual confidence in men is more about function, while in women their sexual confidence includes trust, security and caring. It?s easy to see where the ED sufferer following his prostate surgery feels he can?t function without erections and his partner who feels excluded, ignored and unloved, can develop problems.

Communication is vital

Communication between couples where the man has had prostate cancer surgery and subsequent sexual problems is vital. Patterns of communication in men and women are very different, and are laid down very early in life. ?It?s good to talk?, as the old BT Telecom ad said, but men talk shoulder-to-shoulder, while women talk face-to-face. Men don?t confide in other men; women confide in other women more readily.

Couples, while together for years, can lose the habit of being able to talk to each other. They need to set aside time to talk, agree an agenda, practice talking to each other and listening to each other.

So how can we as family doctors help our patients who come to us with their problems after prostate cancer surgery?

Firstly, we need to give them permission to discuss their problems, by being open, non-judgemental and not embarrassed. One very nice gentleman told me that having returned to his consultant for a check-up, he asked about his lack of erections and when or if they might return. ?Why are you worrying about that?? he was asked. ?Aren?t you cancer-free? Are you interested [in sex]?? He looked at the consultant in amazement and said: ?Aren?t you interested?? There was no reply.

This is not how to do it, obviously. We can, with practice and training, become more comfortable in discussing sexual problems with our patients and be better able to give advice and information. Some brief instruction on sensuality and the reassurance that it is possible to have orgasms without erections will often be sufficient to reassure and help the patient.

In the case of men who feel that they don?t want sex unless they can have full erections, there is always the possibility of VEDs (vacuum erectile devices). This will mean referral back to urology. In men where the relationship has run into difficulties, and they?re not even talking to their partners, referral to a relationship or psychosexual therapist will probably be necessary.

I found it difficult to find any studies on the likelihood of the return of full erections post-prostate surgery. Men are given a figure of two years, but in my research, which was of necessity brief, I couldn?t find any definite figure and wonder if this two years is an anecdotal reference not based on any statistical study. More information in this area would be of great benefit.

Intimacy with impotence

The books by Barry McCarthy and Michael Metz are readily available on Amazon, so could be recommended to patients. Other publications I found useful were Intimacy with Impotence by Ralph and Barbara Alterowitz, published by Life Long, a member of the Perseus Group. Coping with Erectile Dysfunction and Enduring Desire, by McCarthy and Metz, New Harbinger, and The Relate Guide to Loving in Later Life, published by Vermilion, London ? all of these are available on Amazon.

Lots of men suffer from ED, so the advice in this article is relevant and important. We are all sexual brings and there is no age or stage at which we should have to give it up.

?Man survives earthquakes, experiences the horrors of illness and all of the torturers of the soul. But the most tormenting tragedy of all time is, and will be, the tragedy of the bedroom.? ? Leo Tolstoy. Let us not contribute in any way to that tragedy.

Source: http://www.imt.ie/clinical/2013/06/prostate-cancer-%E2%80%94-the-patients-perspective.html

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