Yacov Reisman1 and Woet L. Gianotten2
(1)
Amstelland Hospital, Amstelveen, The Netherlands
(2)
Rehabilitation Centre De Trappenberg, Huizen, The Netherlands
Yacov Reisman (Corresponding author)
Email: uro.amsterdam@gmail.com
Woet L. Gianotten (Corresponding author)
Email: woetgia@ziggo.nl
3.1 Introduction
Cancer is a major public health problem worldwide. Calculating for North-Western Europe, the percentage of cancer in the adult population, for all stages combined (diagnosis through survival), is estimated at 4.4 %. From the perspective of sexuality and intimacy, the partners share much of the damage and disturbance; adding them, approximately 7 % of the adult population is directly involved.
With the advancement of science, technology, and medicine, the numbers of patients who survive cancer are increasing, and supportive care and rehabilitation is receiving increasingly more attention. According to the National Comprehensive Cancer Network guidelines [1], an individual is defined as a cancer survivor from the time of diagnosis, through the balance of his or her life.
After the diagnostic and the immediate treatment phase, a period with regular assessment is recommended for all cancer survivors to determine any needs and necessary interventions on the various relevant areas of life. This pertains to the vast and persistent impact that both the diagnosis and the treatment of cancer can have on the surviving patient, including the potential impact on health, physical and mental states, health behaviors, professional and personal identity, sexuality, and financial standing.
Many cancer survivors are left with physical and/or psychosocial late and/or long-term effects of the illness and its treatment, which can be severe, debilitating, and frequently also permanent.
Sexuality and intimacy is one of those areas of change that is of concern. In various groups of cancer patients the percentage of disturbed sexuality can be very high, reaching 100 % in some of the cancer treatment strategies. Among the most disturbing for impaired sexual function are hormonal therapy and strategies that involve the pelvic organs. But depression and anxiety, which are common in cancer survivors, can also contribute to sexual problems. Such developing disturbances of sexuality and intimacy can cause increased distress and have a significant negative impact on quality of life of the patient and the partner.
In comparison to other areas of adjustment after illness, the recovery of sexuality may be hampered by the fact that most patients and partners find it difficult to talk openly about sex. But there is also a lack of professional attention on the topics of sexuality and intimacy, which is partially based on the general taboo surrounding sexuality [2].
3.2 Arguments Why This Area Is Not Discussed
In spite of the many questions and concerns about their sexuality, the majority of patients find it difficult to raise the subject with their health care providers. The health care providers in their turn are reluctant to talk about this subject, even when they are aware that their medical interventions seriously interrupt the sexual function and pleasure.
What are the reasons that both parties do not to discuss sexuality? At least one explanation unconsciously resonates in all parties (society, patients, and professionals) – the persistent message that sex is for the young, the healthy, and the beautiful.
3.2.1 Professionals
There are several explanations for professional reluctance. Lack of knowledge is one. Whereas in some Western countries sexuality or sexology has been part of the curriculum in the vocational training of health care professionals, other countries completely lack such training. However, having knowledge alone is not enough, since one needs the skills as well to address a subject that is fraught with many emotions. Some professionals fear that they will offend patients by asking questions that are too intimate, which is in itself surprising since the daily practice of medical professionals is full of intimate requests and questions (“Can you take off your underpants!”, etc.).
Some are scared to ask because they do not know how to react upon the answer (“Imagine that there is a problem! Then I don’t know what next to do!”)
Some professionals do not consider discussing sexual disturbances with their patients as their responsibility. And maybe the most common argument is the assumption that patients who have a specific concern about sexuality will raise the topic by themselves. We can be rather clear about that. Time and again it has been shown that it does not work this way.
3.2.2 Patients
The vast majority of patients and partners also do not feel at ease to bring up such a sensitive topic themselves, even when their sexuality is seriously disturbed. Some are not sure whether seeking attention with regard to sexuality would be appropriate (“Shouldn’t I be happy that I am still alive!”). They can be embarrassed to talk about sexuality because sex seems so insignificant in the face of death, or they even feel ashamed to have sexual feelings when so threatened by cancer. Others do not want to disturb the health care providers, who have done their very best to treat the patient well.
Some patients and partners seem also hampered by the idea that sexual problems do not exist in a good relationship. That is one reason why we do not ask: “Do you have a sexual problem?” (and why inquiring about changes in sexual function usually causes less confusion).
For many women and men, it is in some way difficult to share with a third party information that belongs to the most intimate aspects of their relationship, irrespective of having a sexual disturbance and independent of the wish to have their sexual disturbance discussed and solved.
There can also be some breach of intimacy. Even in very good relationships, it is not always natural to share with each other the deeper sexual feelings and fears. That is sometimes seen when the health care provider inquires about sexuality. Then the patients sometimes respond with “No problem!.” But after having talked at home with their partners, patients are more amenable on subsequent follow-ups and clearly want to talk about their disturbances and worries.
3.3 Why Pay Attention
For many patients, sexuality is an important subject that adds to their quality of life. Patients and their partners want to get information regarding the effects of the illness and the treatment on various aspects of their lives and also regarding the effects on sexuality.
As mentioned before, they hope and expect that the health care professionals will initiate this conversation.
Time and again many patients are disappointed in their health care professionals because they received little information, support, and practical suggestions regarding the sexual and intimate changes they experienced in the face of cancer. Although nowadays many professionals are well aware that in case of cancer the topic of sexuality and intimacy truly deserves attention, this is not implemented in their daily practice.
The main focus of this chapter is on the “Why” of paying attention. Most problems in health care need attention and usually there is no chapter in books that specifically addresses “paying attention.” So, what makes the topic of sexuality and intimacy so special?
On the one hand, there are patients who bring up the topic of a sexual disturbance. Just as with any other problem, they deserve proper attention and if possible a solution. The subject of sexual disturbance perhaps differs from other problems in that the topic and discussion, as well as the solutions, could be more “charged.”
But it is obvious that even with serious sexual disturbances, and even when there is a real desire to be helped, the majority of patients and couples will not freely bring up their questions, their worries, and their disturbances in the area of sexuality and intimacy.
So WE have to do that!
We will divide the arguments to do so in three different groups of benefits (or potential benefits):
· The benefits/obligations of paying attention
· The health benefits of sexual expression and intimacy
· The benefits for the professional relationship
3.4 The Benefits/Obligations of Paying Attention
For most people, sexuality is a relevant aspect of their quality of life and a central aspect of their well-being. As defined by the World Health Organization and supported by research, sexuality is one of the major components that contribute to a sense of fulfilled life. Strangely, this needs to be noted and proven by research. Does not everybody know so? Apparently not! We suppose that some professionals have different ideas resulting from negative messages from culture, religion, or education or even due to their own negative sexual experiences.
When people get into the cancer process, sexuality and intimacy frequently are disturbed, which brings down their quality of life (and also that of the partner). Paying attention to quality of life is an important aspect of good care.
After cancer, many of the sexual dysfunctions and disturbances are not the results of the cancer itself but of our medical interventions. Being responsible for the collateral damage of surgery, radiotherapy, chemotherapy, and medication makes us also responsible for dealing with those sexual side effects.
Attention can be as well important for sexual identity. Patients (and partners) who were in the terminal stage of cancer were asked about sexuality and intimacy. Part of the questions was on how they experienced these inquiries. Surprisingly, they all were happy with that attention. What does that mean? By this question the patients apparently felt that they still were seen as alive, as man or woman, or as a sexual being. So, whereas many professionals are scared that inquiring about sexual matters is too intrusive, the opposite is true.
Sexual relationship is the other area that could benefit from adequate attention. As a result of cancer, between 7 and 22 % of couples separate [3]. In the great majority, this relates to couples where the woman has the cancer and the man is the carer. We suppose that many of those relationship disturbances are caused by their not being able to deal with the sexual unavailability of the female patient. Separated (single) patients fare more poorly with more antidepressant use, more hospitalization, and less dying at home.
A more relaxed patient and a more relaxed relationship most probably will benefit the recovery and the healing process.
3.5 The Health Benefits of Sexual Expression and Intimacy
For a very long time, society and the medical community tended to consider sex as a dangerous aspect of life. Only rather recently are we learning about the health benefits of sexual expression [4, 5]. Here we will leave the emotional and social health benefits and limit ourselves to the physical health benefits. With regard to the cancer patient’s process, we abstain here also from addressing the long-term benefits (like less cardiovascular and cerebrovascular incidents, fewer prostate cancers, and better longevity).
What remains are the direct physical benefits that sometimes can be proactively put into action. The following are the most important benefits:
· Muscular tension usually is diminished by sexual stimulation and even more by orgasm. This was found in patients with spinal cord injury and multiple sclerosis, but applies as well to “normal persons.”
· Pain is known to diminish by distraction (for instance, a romantic movie, a sports match, or having pleasurable sex). In women there is an extra benefit when the genitals (especially clitoris and anterior vaginal wall) are stimulated. That sends a signal to the brain by which endorphin is released and the pain threshold increases. Stimulation resulting in orgasm produces the greatest increase in pain threshold.
· Both in woman and in man, the oxytocin level increases by massage, by sexual excitement, and especially by orgasm. A higher oxytocin level has several benefits. It enhances sleep and it relaxes, it is stress-reducing, and acts as an anxyolytic. Besides, it causes more connection between persons, with increased intimacy and affection and it temporarily diminishes the autistic aspects of behavior.
· With satisfying sex there is less depression. This applies both to men and women, not only for mutual sex but also for solo masturbation (except when sex is surrounded by much guilt and sin).
When relevant, sharing such information with our patients could be seen as good care. Furthermore, there appear some indications that sex can also have neuroprotective effects [6].
3.6 The Benefits for the Professional Relationship
There is a fascinating change between the original fear on the part of many health care professionals when they consider addressing sexuality and the actual practice when they have done so.
Initially, professionals are frequently afraid that their questions are “too intimate.” This is surprising since they ask, for example, without any inhibition: “Take off your pants!” or “Can you open your legs!” or “What is the color of your stool?”
After having started addressing sexuality, a common response of the professionals was that the contact with the patient had become much better. One may suppose that then the compliance would have also improved (i.e., the therapeutic instructions and commitments were better followed).
3.7 How
The care for cancer covers a long process with many phases like diagnosis, treatment, recovery, and sometimes a palliative or terminal stage. In addition, patients (and couples) should be asked about their sexual function at regular intervals. One reason for repeating the inquiring is because different process phases can be accompanied by different sexual side effects. But also because different patients (and partners) can react in different ways during the process, depending on the meaning of the various elements of sexual response, sexual expression, and intimacy for each of the partners and for the couple.
Will “repeated inquiring” not lead to “sexological overkill”?
That depends on how it is integrated in the total questioning. It can be very helpful to develop a routine where sexuality has a fixed place in the list of areas to be questioned (for instance, always after questions on fatigue and mood).
It depends also on how questions on sexuality and intimacy are introduced. Both at the start and at the repeating. Let us give an example of the start:
We know that a substantial amount of people with your type of cancer and your type of treatment is confronted with changes in sexuality. Many patients will lose sexual desire and many men will lose their erection. That is a normal reaction to the treatment. For some couples that is seriously disturbing, whereas that is far less damaging for other couples. That is not better or worse. It is the way it is. Because of those possible changes, three things are important.
1. 1.
2. 2.
3. 3.
Regarding the repeating, here also it is relevant to mention why things are asked.
Here is an example of the repeating:
Since you have started this medication, did that change aspects of your sexuality? More precisely, did it influence your sexual desire? (or orgasm, lubrication, etc.)
Inquiring regularly can be done by interview (or in case of time restriction and difficulties, by using the Brief Sexual Symptom Checklist as a primary screening tool) [7] (See appendix).
When a sexual dysfunction is uncovered, a first step in our approach could be acknowledgment of the dysfunction with some explanations about the possible causes. This is sometimes already sufficient to improve patient/partner understanding and allow room for open communication with the professionals but also within the couple. Open communication in its turn can lead to renegotiation about intimacy and sexuality and it can also be the start of a process of coping with functions that are lost.
Health care providers have various options for dealing with sexual dysfunctions and other disturbances in the area of sexuality and intimacy. Examples are:
· Psychotherapy, cognitive behavior therapy, sexual counseling
· Lifestyle modifications such as smoking cessation, going for or maintaining ideal body weight, engaging in regular exercise, and avoiding excess alcohol consumption as measures to improve quality of life and diminish as much as possible sexual inhibiting factors
· Practical adaptations in the area of indirect causes of sexual disturbances, like fatigue, pain, or vaginal dryness
· Prescribing medication or interventions
· Using of tips and tricks; including toys for functions that are lost
These will be described in the following chapters.
Final messages of this chapter:
1. 1.
2. 2.
3. 3.
4. 4.
No approach in cancer deserves to be called holistic as long as sexuality and intimacy have not been adequately addressed.
Appendix
References
1.
National Comprehensive Cancer Network (NCCN) guidelines. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp#supportive.
2.
Carr SV. Talking about sex to oncologists and about cancer to sexologists. Sexologies. 2007;16:267–72.CrossRef
3.
Glantz MJ, Chamberlain MC, Liu Q, et al. Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer. 2009;115:5237–42.CrossRefPubMed
4.
Whipple B, Knowles J, Davis J. The health benefits of sexual expression. In: Tepper MS, Owens AF, editors. Sexual health, vol. 1. Westport: Psychological Foundations, Praeger; 2007. p. 17–28.
5.
Gianotten WL, Whipple B, Owens AF, et al. Sexual activity is a cornerstone of quality of life. An update of “The health benefits of sexual expression”. In: Tepper MS, Owens AF, editors. Sexual health, vol. 1. Westport: Psychological Foundations, Praeger; 2007. p. 28–42.
6.
Spence RD, Voskuhl RR. Neuroprotective effects of estrogens and androgens in CNS inflammation and neurodegeneration. Front Neuroendocrinol. 2012;33:105–15.
7.
Reisman Y, Porst H, Lowenstein L, et al (editors). ESSM Manual of Sexual Medicine. 2nd Edn. Medix Amsterdam. 2015.