Woet L. Gianotten1 and Yacov Reisman1
(1)
Rehabilitation Centre De Trappenberg, Huizen, The Netherlands
Woet L. Gianotten (Corresponding author)
Email: woetgia@ziggo.nl
Yacov Reisman
Email: uro.amsterdam@gmail.com
Cancer and its treatment influence sexuality and intimacy and can do that in many different ways.
Before cancer was there, the sexuality of the patient and the partner has been shaped by their personality, upbringing and culture, their norms and values, and their past sexual experiences. On top of that, the type of cancer, the treatment strategy, and the approach of the oncological professionals have their influence. That mixture of factors causes a wide variety of sexual reactions and sexual scenarios.
In this part we will approach sexuality from the perspective of the various phases in the process and the various treatment strategies.
Let us simplify that by walking along the path of the cancer patient.
8.1 Before the Diagnosis
Part of the patients develops complaints that can interfere with their common sexual pattern. In blood and lymph cancer, fatigue can, for instance, strongly diminish sexual desire and flexibility. Blood loss or a lump can gradually or suddenly create fear for cancer and subsequently change sexuality. When worried, men are more prone to close themselves, whereas women tend to share their fears. Depending on the kind of relationship, this will diminish or increase sensual or sexual contact.
8.2 The Diagnosis
Somtimes the diagnosis is completely unexpected after a routine PAP smear or breast screening. Sometimes it is a discovery during sexual play. Finding a lump in her breast during lovemaking can strongly impair one’s erogenic attraction for breasts. Sometimes there finally is the certainty that it is cancer.
But nearly always the diagnosis is accompanied by an overwhelming roller coaster of emotions. Am I going to die? Will I be able to continue my job/hobby/study/child wish/parenthood/career?
Now, some people immediately stop anything physical, whereas others have increased intimate contact with or without much sensuality. A few people seem to increase genital contact (but probably not in case of genital cancer). There is a strong infestation of the psychological and sexual well-being.
The combination of shock, fear, insecurity, confusion, and sometimes anger are a major life event. After this, one will never be the same. That is why we call it “the new me.” The same goes for the partner, so we tend also to use the term “the new we.”
From the (purely) oncological perspective, the clinician is dealing with factors like staging and morbidity of the cancer. Staging systems differ according to the group of cancers. Solid tumors are usually staged according to the TNM system, based on the size and reach of the primary tumor (T), the involvement of lymph nodes (N), and the presence of metastasis (M). This phase contains also the general life expectancy of the patient.
Proper holistic care includes screening of the social system of the patient (relevant when deciding on the optimal treatment strategy). From the sexological perspective, it will be obvious that the sexual and relationship baseline have to be screened as well.
8.3 The Decision Phase
Guided by the information from the diagnostic process, decisions are made on the treatment approach.
That seems simple. A given cancer, TNM staging, and life expectancy directly should navigate to a given strategy. However, the reality is more complex. Some cancers can be treated by different strategies (e.g., brachytherapy or surgery for prostate cancer). And then there is the patient with a wide range of emotional setups. Patients can, for instance, be very scared for a specific treatment. Patients do have very different opinions on the meaning of life versus the meaning of quality of life. Some patients want to do everything possible to stay alive, whereas others don’t want to suffer too much.
Such differences are partly ingrained in a culture. Some cultures (and medical subcultures) have a strong fighting attitude, with advantages and disadvantages. The “battle to fight the cancer enemy”-approach allows to develop marvelous treatments (and some successes). But it also can create the feeling that losing the battle (i.e., dying) means that you didn’t fight enough. Besides it doesn’t allow much room for accepting death and saying good-bye to family and life.
Another factor is the medical education and hierarchy. In some countries physicians are trained to exclusively decide. In other countries physicians are learning how to integrate the sensitivities and interests of the patient and the couple. This shared decision making (SDM) is becoming a hallmark of patient-centered care, especially relevant in oncology practice. By properly and honestly informing about the potential risks and benefits of different treatment options, the patient is engaged in the decision. They then will be more likely to experience confidence in and satisfaction with treatment decisions, and they will have increased trust in their providers [1].
It will be obvious that sexual function, sexual identity, and sexual relationship are very important aspects to be integrated in the decision process, especially in those cancers with a high risk of disturbing sexuality and intimacy.
8.4 The Treatment Phase
Whereas for a long time treatment was confined to the three different strategies: surgery, chemotherapy, or radiotherapy, we now have many different additions and combinations like adjuvant, neoadjuvant, radio-chemotherapy, and targeted therapy. For clarity, we’ll give at the end of this chapter a short glossary of those strategies.
Treatment can be a short process of admission and surgery, with the additional burden for the partner and family, the fear and solitude for patient and partner, and then the happiness when everything is past.
It can also be a long-standing process of repeated cycles of chemotherapy that may last for 6 months or even more. Obviously this will have different consequences for sexuality and the sexual relationship.
8.5 The Rehabilitation Phase
This is the period of going back to normal or at least trying to do so. No more the battle to stay alive, but the quest to redevelop a normal life. That means regaining physical, emotional, and relational strength and dealing with the various areas of suffered damage. Now patient and partner have to face the emotional damage, with maybe anxiety or depression. They have to face the physical damage and side effects (for instance how to deal with an amputation or colostomy). And they have to face the sexual or relationship damage.
For some patients the cancer was apparently a good excuse to stop sexuality completely.
Others will return to a lower level of sexuality because of impaired sexual function, damaged personal identity, or damaged relationship, whereas others finally get back more or less to the same level of sexuality and intimacy as before the cancer treatment.
This is a period of finding a new balance in all aspects of life. That frequently means developing a coping strategy to deal with what is still available. Although it is tempting to point to the physical damage as the crucial factor, the emotional power of the patient and the partner seem to be more relevant. After all, real health is not the absence of disease, but the skill to properly deal with what is available. That seems rather clear in the small percentage of people who after the treatment reach a “higher level” of sexuality and intimacy.
The rehabilitation of sexuality and intimacy can be rather difficult, for instance, when a couple strongly adheres to traditional scripts and when intimacy without erection cannot be negotiated [2].
Redeveloping their sexual relationship appears also more difficult in the couples who postpone the restarting of intimacy and sexuality.
Especially in the rehabilitation phase, professionals should be aware of the need for proper support in this area of sexuality.
8.6 The Survivor Phase
Many people get the message that now the cancer has been treated and the patient is cured. But, how to be sure about that? Some survivors experience fear every time when they feel some pain or other physical complaint. For many survivors there is the stress and insecurity when they have to go for their regular post-cancer routine checkup.
Especially for the younger survivors, there can be the awareness of the possible long-term health consequences with cardiomyopathy, neuropathy, and infertility and a clear increase in the risk of developing a new (“second”) cancer [3].
Besides the survivor has to deal with whatever has been lost in the previous phases: lost sense of invulnerability and immortality, lost appearance and youth, lost fertility, lost partner, lost stamina, and frequently also lost sexual capacities.
8.7 The Palliative Phase
In part of the patients, the treatment does not succeed to completely stop the cancer. The treatment then focuses on continuing life as good as possible. That also should include attention for sexuality.
Nowadays, in breast cancer and in prostate cancer, we frequently cannot cure, but we can keep the cancer at bay for many years. That’s why now we call these situations “chronic disease.”
For the situation when the patient reaches the last stage, we refer to Chap. 34.
This part will offer five chapters.
|
Chapter 9 |
The Sexual Consequences of the Cancer Diagnosis |
|
Chapter 10 |
The Sexual Consequences of Radiotherapy Treatment |
|
Chapter 11 |
The Sexual Consequences of Chemotherapy Treatment |
|
Chapter 12 |
The Sexual Consequences of Surgical Treatment |
|
Chapter 13 |
The Sexual Consequences of Medication for Cancer and Cancer-Related Side Effects |
For the rehabilitation phase, we have included a separate fourth part (chapters 24–28)
8.8 A Short Glossary of Various Treatment Strategies
8.8.1 Surgery
The tumor is removed (“amputated”). This is a usual procedure when there is a solitary mass. The surgeon’s task is to remove the cancer tissue completely (with a cutting edge free of cancer cells), without damaging the body too much. The risk of sexual damage is bigger when the innervation or circulation to the sexual organs is close to the tumor, when the removed parts were part of the genitals, when they were (part of) an erogenic zone, or when they were relevant for sexual identity.
The treatment phase of admission and surgery usually is rather short.
8.8.2 Chemotherapy
Chemotherapy kills the fast-growing cells in the body, not only the cancer cells but also the cells of the mucous membranes (e.g., mouth, bowel, vagina, bladder). So during treatment there are various side effects (aphthous mouth ulcers, dry mouth, nausea, diarrhea, dyspareunia) and also fatigue, all with sexual consequences. Loss of hair is another side effect with for some patients’ serious damage to their sexual identity. Among the general public, chemotherapy has a rather bad name. Some patients are indeed very ill during or after chemo-treatment, whereas others react with much less side effects.
There are also long-term effects of chemo-treatment with the decrease in gonadal hormones and fertility as important sex-damaging factors.
8.8.3 Radiotherapy
Radiation damages the DNA and as such causes death of the cancer cells. Some cancers are very radiosensitive (like leukemia), but others much less (like epithelial cancers). Radiotherapy is not painful and the few short-term effects depend on the organs where the radiation passes (e.g., skin burning). The long-term side effects that gradually develop over the months and years are related to the organs that have been submitted to radiation and to the kind and amount of radiation. Examples are vaginal narrowing, loss of erection, hypogonadism, infertility, and dried salivary glands.
Roughly there are four different radiotherapy approaches:
· External beam radiation: the rays have to pass the body to reach the tumor.
· Brachytherapy: little radioactive pellets are injected or implanted in the tumor itself.
· Radioisotope therapy: the radioactivity is coupled to molecules that reach the tumor via the bloodstream.
· Total body irradiation (TBI): nearly all the body is radiated, which is followed by transplantation of bone marrow or hematopoietic stem cells.
8.8.4 Adjuvant Therapy
This is any therapy that is given in addition to the “main treatment’.” In general this is used for treatment strategies that are added to the surgical approach. For example, chemotherapy after a tumor has been removed, with the intention to stop the growth of dissemination and growth of micrometastases.
8.8.5 Neoadjuvant Therapy
A treatment given before the main strategy, for example, chemotherapy before surgery. A common reason is to reduce the size of a tumor so as to facilitate effective surgery.
8.8.6 Radio-chemotherapy
Here the two treatment strategies are combined but equally necessary.
8.8.7 Targeted Therapy
Whereas chemotherapeutic agents act against all actively dividing cells, targeted therapies interfere only with specific molecules involved in cancer cell growth.
8.8.8 Hormonal Therapy
This is a form of targeted therapy and in fact “antihormonal” therapy. Applied in the cancers where the cancer growth depends on the presence of testosterone (prostate cancer) or estrogen (breast cancer).
References
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Kane HL, Halpern MT, Squiers LB, et al. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin. 2014;64:377–88.CrossRefPubMed
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Gilbert E, Ussher JM, Perz J. Renegotiating sexuality and intimacy in the context of cancer: the experiences of carers. Arch Sex Behav. 2010;39:998–1009.CrossRefPubMed
3.
Ganz P, editor. Cancer survivorship; today and tomorrow. Springer; 2007. p. 54–76.
4.
Aziz MS. Late effects of Cancer treatment. In: Ganz PA. (editor) Cancer Survivorship; Today and Tomorrow. New York, Springer Science+Business Media. 2007. p54–67.