Cancer, Intimacy and Sexuality

24. “Dealing with”

Woet L. Gianotten¹ and Yacov Reisman²

(1)

Rehabilitation Center De Trappenberg, Huizen, The Netherlands

(2)

Amstelland Hospital, Amstelveen, The Netherlands

Woet L. Gianotten (Corresponding author)

Email: woetgia@ziggo.nl

Yacov Reisman

Email: uro.amsterdam@gmail.com

In this part, we address various ways of dealing with disturbances of sexuality and intimacy in people with cancer. In the second part, those areas have been approached from the perspective of the diagnostic phase and various treatment strategies. In the third part, they were approached from the perspective of specific cancers. In this fourth part, we will look more generally from a rehabilitation perspective. In the course of time, the care for people with cancer has changed. The fact that a growing amount of people survive has induced the need to pay attention to their later quality of life. That change can, for instance, be seen in the physical therapy approach with various exercises to improve the condition of circulation and muscles of the cancer patient, with the additional benefit of decreased mortality for survivors who completed at least 15 MET-hrs per week of physical activity [1].

In the last decade, such rehabilitation awareness is also developing in sexual matters. A clear change, for instance, took place in prostate cancer care. In nearly all radical prostate surgery, damage occurs to the nerves that regulate erection. In part of the men, this damage is temporary, and after a period of many months, the information system that conveys messages through the nerves to the cavernous body appears to get restored. However, in the interval between the surgery and the regained neural capacity, cavernous tissue damage can take place. That created the idea of ‘penile rehabilitation’. A simplified explanation for this ‘penile rehabilitation’ is the idea that regular ‘forced erections’ will create a condition that should be sufficient to keep the cavernous endothelium and muscles in good enough shape for later spontaneous erections.

Gradually this focusing on ‘penile rehabilitation’ is replaced by a more holistic approach. After all, behind every penis is a man; and behind nearly every man is a partner. In addition to that, the lifestyle of the man or the couple and his/their experiences from the past could need adaptation. Addressing and adequately dealing with those various factors probably will influence in the direction of maintaining disturbed function or recovering towards optimal function.

In the context of this book, such a holistic approach in rehabilitation seems rather relevant and valuable.

At the same time, we have to be aware that there will be a wide variety in the possible implementation of the various elements of rehabilitation, since the range in rehabilitation opportunities also depends on the culture (place and time) that surrounds the professional and the patient.

For some societies, the basic argument to invest in rehabilitation seems to get the person as fast as possible back in the workforce. Other societies can afford the luxury to invest in quality of life (QoL), even when there are no direct economic benefits. Since better sexual function usually is not seen as having any economic value, rehabilitation towards sexual pleasure and sexual quality of life probably seems reserved for those societies (or parts of societies) where they possess sufficient extra assets. Those assets can be financial. The Scandinavian countries, for instance, have sufficient money available to invest in sexual QoL. The assets could be found also at a humanitarian level. In the past human care belonged for a big part to the various religions, although in terms of sexuality we have to admit that most religious groups either have denied the importance of it, or have made a mess of it.

Currently, more groups in society and in health care become for other reasons aware of their responsibility to pay attention to the unmet needs in sexual matters and become aware of the importance of sexuality as a strong force in the life of people and of couples.

24.1 Rehabilitation

Rehabilitation can be addressed in many ways. An important step is trying to prevent decline. Prevention is partly discussed in the first part in Chap. 6 where structures are given how and when to inquire, inform and eventually intervene. Those are measures to keep the ‘professional damage’ as low as possible.

Probably, there are also other ways to prevent. Time and again, it is obvious that in the process of ageing, in chronic diseases and in cancer, the people who before had a good sex life will have the lowest decline. Could that knowledge be converted in a strategy? What should happen if we could get patients/couples interested in investing in their sex life before starting cancer treatment and in that way strengthen their sexual foundation?

In some areas of orthopaedics and medicine, a comparable approach is called ‘pre-habilitation’. Already before the actual surgery, the patient starts a scheme with exercises, physical activities (and maybe diet) to strengthen the muscles and joints. In that way an overdose of postoperative or post-intervention physical decline can be prevented. Imagine that we can develop for couples a comparable ‘oncosexual pre-habilitation’ strategy. The impact of such an approach will be very different from the current situation where sexuality and sexual function frequently are left unmentioned.

Under the heading ‘holistic rehabilitation’, it seems useful to mention as well those elements that in general have a role in keeping good health and preventing further physical decline. That goes both for general health and for sexual health. An optimal lifestyle with sufficient movement, healthy diet, sufficient sleep and no intoxication seems recommended not only to assist in repairing the damage from chemotherapy and radiotherapy but also to prevent the common age-related deterioration in sexual function. Such decline will take place at a higher rate in patients who have undergone cancer treatment with its frequent deleterious sexual side effects [2].

Some of the readers could be surprised that we have not included a chapter on psychooncology. Although not all sexual medicine professionals are very holistic, sexology and oncosexology can nearly only exist with multidisciplinarity. We believe that many of the chapters of this book are written from a wide psychosocial perspective. So, we guess that many psychooncology professionals will feel at home in the ideas of this book. For a matter of fact, in psychooncology, attention for the sexual and erotic aspects of intimacy tends not to be so prominent.

This part on ‘Dealing with’ has four chapters:

We are aware that we cannot cover all areas, but we’ll give some extra information on two areas: additional rehabilitation in men geared to other cancers as well and additional rehabilitation in women especially after breast cancer.

24.2 Additional Rehabilitation in Men

After Montorsi’s 1997 publication on penile rehabilitation (aiming at erectile recovery to preoperative levels), everywhere penile rehabilitation programmes were embraced. However, many professionals tended to forget that sexuality is more than an erection and a penis. Behind every penis is a man with a backpack full of male socialization. And behind nearly every man is a partner with an own share of emotions. Next to the biological factors (changes in anatomy and physiology), there are the psychological changes and the social factors with norms, values and social constructions. So, sexual disturbances after cancer encompass much more than only erectile dysfunction or other sexual dysfunctions like pain, anejaculation, urinary incontinence during orgasm or low desire. They include changed body image, lost male identity, anxiety, depression, loneliness and relationship troubles. Each of these can cause decline in sexual intimacy. As stated earlier in this book, the diagnosis and treatment of cancer inevitably force the patient towards a new equilibrium that we now tend to call ‘the new me’ and force as well the couple towards ‘a new we’.

Dealing with male patients, we have to be aware of the wide diversity in male behaviour, with sometimes rather peculiar ways to deal with life and problems. One of them is ‘not facing in case of a problem’. Whereas part of the men seek medical attention when there is a complaint (or the fear of having cancer), others do not and hope that the troubles will disappear without intervention (and many also don’t tell their partner about their ailment or their worries). The same happens also regularly when there is a sexual disturbance.

Besides, many men have a typical reaction to diminished erection. They stop initiating sex or affection resulting not only in loss of intercourse but also in decreased nonsexual affection [3]. Since many of their female partners are afraid to seem too demanding when asking for touch and physical contact, that causes also for the partners a serious loss. The lack of touch and physical contact seems for many women more upsetting than the loss of erection or sexual pleasure.

Such a combination of reactions is not very productive, especially not since maintaining sexual intimacy has been proven to be an essential part of the recovery process. So, sexual recovery requires addressing not only the sexual dysfunctions but also the feelings about losses and grief and the typical tendency of many males not to face the problem. Proactive recommendations to engage in intentional sex, eventually with acceptance of aids/tools and open communication, can sometimes reopen the lines to recovering of couple intimacy.

Although medical interventions work for some, we should not forget that erections and orgasms are just ingredients in sex, not the whole recipe. Issues like affection, communication, patience and creativity and psychological aspects like anxiety and depression should be addressed as well. In other words, where medical and surgical therapies are effective in sexual function recovery or preservation, psychological and sexual counselling are equally important in intimacy rehabilitation.

24.3 Additional Female Rehabilitation

A long history of male-dominated societies, male-dominated religion and male-dominated science didn’t create much sense of physical and sexual self-respect in the majority of women. Female genitals are less prominent than male genitals, adding to that female insecurity. So, the question ‘Am I normal?’ is very common for (young) women, and many volumes have been written on how to deal with that confusion [4]. Such insecurity doesn’t stop at the arrival of cancer. So, health-care professionals should understand how sexuality and insecurity can become intertwined when women get cancer (especially when they get breast cancer).

Women have also their own typical reaction patterns on the disease and the treatment process. Compared to men, they worry less about the damage to sexual function and more about disfigurement. With such an emotional make-up, breast cancer treatment will have many consequences. With their relatively higher focus on the relationship, women can also take over the responsibility for what their partner wants or doesn’t want (at least according to what she believes). A common reaction after mastectomy is, for instance, that the woman ‘is convinced’ that her husband doesn’t want intercourse any more. According to our (North-Western European) impression that doesn’t match with the men’s reaction. For the majority of men (we guess ±95 %), mastectomy is no reason not to want sexual contact (although they can feel insecure about the woman’s apparent sense of shame and shyness). If the man is very kind (or shy), he will not approach his wife in an erotic-sexual way. Then she will see her fear confirmed. And nothing will happen, making a restart of sexual contact more and more difficult. Such avoidance patterns should be proactively investigated and dealt with. Another pitfall is the inability of many couples to be intimate and erotic without penetration. When after the hormonal interventions for breast cancer dyspareunia develops, many couples have only two options (either dyspareunia or ‘no sex’). Health-care professionals should be able to recommend considering cuddling and kissing without penetration till the woman has had enough (which can mean till she is satisfied or it can mean be happy without being satisfied). When the man needs the release of orgasm, he could do that by himself with his wife in his other arm.

24.4 Epilogue

Prior to treatment we need to teach and inform the patient/couple as much as possible:

· About the effects that the treatment may have on sexuality

· That after cancer treatment, a lot of pleasure and intimacy is still possible

· That there are solutions when a disturbance develops

In the current age of pharmacological developments, many men and women hope for a simple solution in case a sexual problem has developed. Although medical interventions work for some, we should not forget that erections and orgasms are just ingredients in sex, not the whole recipe. We need to address issues like affection, communication, patience and creativity, and we shouldn’t forget that psychological aspects like anxiety and depression sometimes have to be addressed.

For sexual recovery and regaining intimacy, it can be needed to discuss loss and grief next to talking on sexual dysfunction.

Knowing that maintaining sexual intimacy is one of the essential elements in the journey to recovery, it can be wise to recommend ‘considering intentional sex’ with or without the acceptance of aids/tools and open communication (and sometimes under the motto ‘use it or lose it!’).

With pharmacological and surgical strategies being equally effective in treating (or preventing) sexual disturbances, we have to be aware that psychological and sexual counselling are equally important in sexual rehabilitation. On the one hand, there are no evidence-based recommendations or consensus guidelines regarding the optimal rehabilitation or the optimal treatment protocol. But we dare to state that any rehabilitation strategy is undoubtedly better than no action at all.

References

1.

Li T, Wei S, Shi Y, et al. The dose-response effect of physical activity on cancer mortality: findings from 71 prospective cohort studies. Br J Sports Med. 2016;50:339–45.CrossRefPubMed

2.

Ganz PA. Cancer Survivors: a physician’s perspective. In: Ganz PA, editor. Cancer survivorship; today and tomorrow. New York, Springer Science+Business Media LLC. 2007. p 1–7.

3.

Katz A, Dizon DS. Sexuality after cancer: a model for male survivors. J Sex Med. 2016;13:70–8.CrossRefPubMed

4.

Nagoski E. Come as you are. The surprising new science that will transform your sex life. New York. Simon & Schuster paperbacks. 2015.