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
With the emergence of advanced treatment modalities for cancer, the survival rate of cancer patients has increased, often leading to long-term survival. Many types of cancer have gradually evolved from an acute to a chronic disease, and, with the population growing older, the number of cancer survivors in the population is constantly increasing. The cancer as disease, the diagnosis, and the therapies, they all can have a negative effect on the quality of life on both the patient and the partner (and also of other family members). The impact of those various elements of the cancer process tends to cause a decline in the patients’ level of functioning and on their ability to maintain intimacy and a healthy sex life with their partner. On the patients’ part, this will go on for many years even after the cancer treatment has come to an end. In oncology this evolution has created a shift in focus from cure and survival to care and improving quality of life.
Sexual dysfunctions are identified among the majority of oncology patients, particularly those with gynaecological and urological cancers. Studies have shown that at least 35–50 % of cancer survivors may experience sexual dysfunction as a consequence of the treatment. Although sexual problems are common among cancer patients, very little professional and therapeutic attention is paid to that aspect of their life. Cancer patients clearly report that they would welcome information about sexual matters. They report feelings of abandonment and not being taken seriously. More so, the patients usually neither receive adequate information regarding the sexual difficulties they can develop through the cancer treatment strategies nor regarding possible treatments when sexual difficulties develop. Nowadays, healthcare professionals are increasingly confronted with questions regarding long-term survival, but also regarding physical, emotional, and sexual side effects of cancer and its treatment. So, talking about ‘survival’ has been and still is the oncology game with sexuality and intimacy not seen in the same league as survival.
The importance of addressing these side effects has caused a significant growth of psycho-oncological expertise. However, while attention to psychosocial effects of cancer and cancer treatment is generally accepted, discussing sexual consequences of cancer in the field of oncological care is still warranted and has only recently been recognized. This recognition has resulted in the emergence of a new discipline called oncosexology.
The oncosexology intervention system encompasses a team of multidisciplinary professionals (physicians, psychologists, social workers, couple therapists and sexologists, oncology nurses, etc.), who together provide to the cancer patients and their partners up-to-date information and at a later stage adequate therapy focusing on their sexual and relational needs. It is possible to have a satisfying relationship and sex life even after these have considerably changed as consequence of cancer, but it requires adaptation of precancer patterns and acceptance and support by the partner.
In the development of a sound oncosexological line of care, one has to distinguish between what the patient needs and what the professional needs. Whereas the patient needs attention for intimacy and sexuality and the right approach to the various disturbances, the professional needs the knowledge and skills to properly inquire about changes. The professional should also be able to educate and inform about possible sexual side effects of cancer and treatment and also be able to deal with disturbances of sexual function, sexual identity, and sexual relationship. Unfortunately there is no official training in this new area of medicine and sexology. Teaching and training of those skills fits very well in the biopsychosocial approach. Even when caused by a biological factor (as is the case in cancer and cancer treatment), in all sexual and intimacy issues, always many psychological issues, social constructions, relationship issues, satisfaction aspects and context are involved. Next to dealing with the cancer, the healthcare provider needs as well some additional skills. One of them is the competence to optimally deal with a variable level of sexual openness to their patients but also to their direct colleagues and the competence to easily and openly cooperate with professionals of other disciplines.
We believe that in good cancer care the topic of sexuality and intimacy should be effectively addressed. Problems in this field should be taken seriously and handled professionally, and, when necessary, the patients or the couple should be referred to a colleague with oncosexological expertise. Addressing the issue of sexuality and giving the proper information require a mindset with the right attitude and skills where much can be done already with a limited amount of knowledge. This new field of oncosexology is still lacking sound scientific evidence for many of the used therapeutic modalities. Many of them have been adapted from physical rehabilitation sexology.
In front of you is, to our knowledge, the first practical book on oncosexology. Because of the lack of practical knowledge and training, we decided to focus on practical knowledge and skills. We avoid as much as possible epidemiological data or extensive background information. We aim to give the reader information which could be used in the daily oncology practice. In our opinion, this book can be a valuable source of information for various professionals, from the fields of oncology, general medical practice, and psychosocial practice and also from the fields of sexology, sexual health, and sexual medicine.
Diversity is a major “mantra” when dealing with sexuality and sexual medicine. In the development of this book, time and again we were confronted with diversity and differences. That made us aware of an important message to the reader of this book: There is no “one size fits all!” Let’s mention and explain some of the relevant diversities:
· Patients: Some are young and some are old, some single, and some already 45 years married; some are gay and many are hetero; some nearly never think about sexuality, and for some others sexuality is a major element in their quality of life.
· Partners: Some who cannot handle the stress of what happens in their life and some who positively grow into a new role as a very good partner.
· Cancers: Some cancers are far away from the sexual machinery, and some are localized in the genital organs; some have a good prognosis, and some immediately send people toward the end of life.
· Cancer incidence: Some cancers are seen seldom and others happen frequently. And let’s face reality: The same cancer can have a very different incidence in another country. Comparing incidence rates in various European countries gives some rather shocking data [1]. The age-standardized incidence rate per 100,000 differs, for instance, for breast cancer from 49 in one country to 148 in another European country; for prostate cancer, it ranges from 25 to 193; and for colorectal cancer, from 13 to 92.
· Treatments: Some treatments barely influence sexual quality of life and some others are real joy-killers.
· Professional approach: It is tempting to address the differences between the good and the bad professionals. But let’s focus on the good ones. There are the technical professionals who excel in surgery, and there are the psychosocial ones who excel in reassuring the patients with their fears and worries. Besides, they all have their cultural luggage. The communication skills we have learned from the medical curriculum in our own country is found to be different from that of another country even among countries that seem rather the same [2].
· Culture: Even when we only focus on Europe or on the countries of the European Community (EU 27), there are great differences, for instance, on the insurance systems, the approach to euthanasia, the openness to nonmainstream orientation, the acceptance of medical marihuana use, the general practitioner as gatekeeper to the medical system, etc. We all have to deal with the reality of the society we are living in.
· The authors of this book: They form a group with a wide diversity in specialties, approaches, and expertise. Next to that, they are from 14 different countries. When selecting the authors, we had kind of a predominantly European perspective in mind, vaguely with an illusion of European uniformity. Let’s leave it to the readers to decide if we succeeded in selecting a valuable stew of information, attitude, skills, and advocacy.
· The readers of this book: Their diversity was a challenge for editors and authors. Some readers will have been brought up in oncology. They should be aware that the typical cancer information is intended more for the noncancer professionals. On the other hand, we recommend the readers who are rooted in sexology or sexual medicine not to browse too much on the sexology-specific information, because that information is more geared toward the non-sexuality professionals.
We are very grateful to the authors of the different chapters, who have contributed with their expertise and intellect and who provide the best possible practical content. We hope that you, the reader, will find this book informative and useful and that you’ll enjoy reading it.
The structure of this book is built upon five pillars.
|
Chapters 2, 3, 4, 5, 6, and 7 |
will offer some general starting ideas. It will address aspects of paying attention, the why and how of sexuality (included sexual function), a general look at sexual disturbances due to cancer treatment (sexual dysfunctions), a formal structure for oncosexological care, and training aspects for professionals who have to deal with the topic of sexuality and intimacy. |
|
Chapters 8, 9, 10, 11, 12, and 13 |
takes a look at the consequences on sexuality and intimacy after the cancer diagnosis and after the major treatment strategies (radiotherapy, chemotherapy, surgery, and medication). |
|
Chapters 14, 15, 16, 17, 18, 19, 20, 21, 22, and 23 |
informs about aspects of sexual change in nine different cancers. These are the ones most clearly known to have much influence on sexuality and intimacy. |
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Chapters 24, 25, 26, 27, and 28 |
deals with various treatment strategies for sexual disturbances, focusing on rehabilitation aspects from the perspective of the couple relationship, of the male patient, and of the female patient and finally on the use of sexual tools, toys, and additions. |
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Chapters 29, 30, 31, 32, 33, and 34 |
highlights five special groups and situations: attention for the partner, for the very young with cancer, for the senior cancer patients, for the couples with a nonmainstream orientation, and for aspects of sexuality in the end of life phase. |
References
1.
Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, et al. Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012. Eur J Cancer. 2013;49:1374–403.CrossRefPubMed
2.
Meeuwesen L, van den Brink-Muinen A, Hofstede G. Can dimensions of national culture predict cross-national differences in medical communication? Patient Educ Couns. 2009;75:58–66.CrossRefPubMed