Cancer, Intimacy and Sexuality

15. Breast Cancer and Sexuality

Johannes Bitzer1 and Daniela Hahn2

(1)

University Hospital Basel Spitalstrasse 21, CH-4031, Basel, Switzerland

(2)

Department of Psychosocial Oncology, Antoni Van Leeuwenhoek Hospital and Netherlands Cancer Institute, Amsterdam, The Netherlands

Johannes BitzerSenior Consultant and Ex Chairman of the Department of Obstetrics and Gynaecology and Head of Psychosomatic Gynaecology (Corresponding author)

Email: johannes.bitzer@usb.ch

Daniela Hahn

Email: d.hahn@nki.nl

15.1 When and How to Address Sexual Health and Quality of Sexual Life in Breast Cancer Patients?

Many breast cancer patients are confronted with the diagnosis of cancer at a moment in their life when they feel healthy and have no symptoms of a severe disease. Through the diagnosis and the subsequent treatment their normal life is brutally disrupted and they are thrown into a deep crisis with feelings of shock and despair and the confrontation with death and dying. Therefore, many patients are at the start of their treatment completely absorbed by the challenge to overcome this life-threatening crisis, cope with the fear of death and regain some emotional stability.

For women at high risk for developing breast cancer due to a BRCA mutation, breasts often are removed from sensuality but become a medicalized body part [1].

At the time of the breast cancer diagnosis, the possible negative impact of the treatment is not a matter of major concern for the majority of women. Sexual concerns also come not in the first place for most women who have just heard about their high risk of hereditary cancer. Those patients are grateful for improved survival and options for profound risk management, and tend to take side-effects disturbing their sexual life rather for granted, thus survival superseding sex [2]. The same is true for the medical team, since their primary interest lies in life-saving efforts and the best evidence-based treatment strategy.

Depending on the partner and the relationship, a smaller part of women will feel guilty about losing sexual interest, especially in those couples with a male partner who (either in reality or in the mind of the woman) strongly need sexual contact.

Cancer and its treatment may affect patient’s sexuality, rather long term or permanent, if not signalled. But patients differ in their reactions. Some breast cancer patients experience changes in all phases of the sexual response, others experience none. The most common sexual change for cancer patients seems to be an overall loss of desire. Sexual changes are caused by physical and psychological factors. Considering the wide range of side effects that cancer treatment can cause on sexual functioning, it is surprising that conversations about sexual health care are frequently missing during cancer care. As a consequence, the patient will not receive the personalized care she deserves.

There is a great individual variability with respect to the duration of this first phase and the duration of the sexual disturbances. After regaining some stability and realizing that life goes on, patients experience the impact of the survival-oriented treatment on their everyday life, their quality of life and their sexuality. At this moment, patients would need counselling and support, but unfortunately they often find it difficult to talk about these problems with the oncology professionals who have been their helpers in the existential issue of survival. They may feel embarrassed and ashamed, consider sexual problems not important enough to mention it to the doctor, may feel that it is not appropriate to bother the doctor, do not know who should initiate discussion about sexuality or be insecure whether the professional is sufficiently competent in taking up these issues [3].

On the other hand, many healthcare professionals themselves are not at ease in dealing with these issues and both parties avoid the subject [3]. Reluctance to initiate conversation on sexuality may come from fears of litigation and over-involvement in non-medical issues, and misleading assumptions held about their breast cancer patients’ priorities for treatment [4].

Sexual problems and dysfunctions which would have been amenable to some form of treatment remain thus undetected and may become worse over time and finally lead to definitive negative changes with serious consequences for the quality of life of the breast cancer survivors and their partners.

Silence about sexual problems can hurt relationships [5]. There are quite some benefits when physicians inform their patients about the challenges facing them after cancer treatment. Simply knowing in advance that sexual changes frequently follow treatment provides patients with regaining control by anticipating problems ahead of time and planning ways of coping. Interpersonal relationships may be vulnerable after a cancer diagnosis.

Taking into account that currently an estimated 80 % of patients will survive their disease it is important to address sexual life and function early during treatment by informing patients about possible problems which may arise when they become again sexually active and that they can get help and counselling if needed.

In Switzerland, we use a short questionnaire developed by our team. The questionnaire is designed to ask women whether they consider at this moment sexuality an important issue for them, whether they have become sexually active again after the primary treatment, whether they have experienced difficulties in the area of sexuality and intimacy and whether they like counselling and care at this moment or whether they might consider that at a later moment.

In the Netherlands, the breast cancer clinic of the Impala Clinics developed a special sexuality and intimacy module in addition to the widely used distress thermometer in oncology. At various points in the illness trajectory, the extended distress thermometer signals specific sexual and intimacy problems that warrant attention of the multidisciplinary breast cancer team.

15.2 The Possible Impact of the Diagnosis and Treatment on Female Sexual Function

Several dimensions of the patient’s health and well-being are affected and possibly severely impaired. Depending on the stage of the disease, the patient undergoes various treatment strategies and interventions that in many ways can have an impact on sexual function.

The diagnosis itself may lead to a state of fear, helplessness and even depression which may eliminate all interest in sex or pleasure with sexual activities.

For most women the breast is closely linked to their female sexual identity and attractiveness and the breasts and nipples play an important part in the process of sexual arousal. But the breast is also an organ closely linked to mothering a baby, nourishment and care.

When the breast, being so strongly connected to deep and essential emotions, becomes the central focus of a life-threatening disease, the emotional response can include negative emotions like deep mistrust, disappointment and hostility. When the cancer is situated in an organ of love and care, the basic trust in the body as a whole is on stake.

With improved medical treatments, cancer survivors are living longer. And sexuality and intimacy can help lessen emotional distress and improve psychosocial and sexual adjustment.

The therapy to overcome cancer and help survival is – in general and preferable – multidimensional. Each type of therapy has an impact on the body and the mind which may inhibit sexual expression, sexual pleasure and thus disturb the psychophysiology of the female sexual response. Intimacy and sexual expression on the other hand may help lessen the emotional and relational distress and improve couple adjustment.

Interpersonal relationships can be vulnerable after a cancer diagnosis, and spouses may also experience mood changes and depression. In a small study, it was found that partner initiation of sex predicted greater marital satisfaction [6].

When treatment is finished, many women feel left alone dealing with sexual consequences, which are global, often long-lasting and related to the type of chosen treatment. Quite some women return to sexual activity, though they experience lack of sexual desire, decreased arousal, dyspareunia and fatigue. This can be the result of kind of ‘love ethos’ or out of fear for partner abandonment if sexual activity is not resumed. Others start sexual activity as a way of expressing affection and maintaining intimacy in the partner-relationship [7].

15.3 Consequences According to the Various Treatment Strategies

15.3.1 Surgery

The objective of surgery is to totally eliminate the cancer tissue with a safe margin, sparing as much as possible healthy tissue and the nipple areola complex and the pre-existing shape of the breast. Breast surgery can result in loss of sexual self-image, loss of (nipple) sensitivity, disfiguring, painful scarring and painful, lymph node dissection causing swelling and lymphedema.

In any way, the intervention leads to a change of a part of the body which has an important emotional representation in the mind of the patient. For some patients this change may lead to a state of mind in which they experience this part of the body as foreign, no more belonging to them, or as ugly, malformed, as a signal of fear and threat. They may experience it as a serious loss of attractiveness which may lead to feelings of shame, inferiority which may have an impact on the relationship (see below).

The degree of individual distress is influenced by the extent and procedure of the surgical intervention but also and possibly to a larger degree by the individual pre-existing body image and the personal coping style. To diminish a possible negative impact on body image, discussing oncoplastic reconstructive surgery is important.

The changes in body image may have a negative impact on sexual desire and arousal by diminishing the self-perception of being sexually attractive and a general feeling of satisfaction with one’s own body.

15.3.2 Radiotherapy

Radiation therapy affects sexual life of breast cancer patients in various ways. In those patients in which the tumour is excised leaving the majority of the breast tissue intact, postoperative radiotherapy is indicated to destroy tumour cells which may have been left behind in the breast tissue. This intervention may lead to inflammatory reactions of the skin and when the axillary region is included it may cause lymphedema of the arm. Radiation damage to the skin may provoke negative responses to sexual caressing. All these changes may indirectly have a negative influence on sexual health by causing chronic pain and feelings of disfigurement.

Fatigue and insomnia are known to be severe side effects of radiation therapy, which may negatively affect sexual desire.

15.3.3 Antihormone Therapy

Most breast cancers are ‘hormone positive’ with about 80 % being ‘ER-positive’ meaning that the cancer cells grow in response to oestrogen and about 65 % of them also ‘PR-positive’ meaning that they grow in response to progesterone. Those patients get long-acting treatment with anti-hormonal drugs. The action of oestrogen is then not only blocked in cancer cells, but in the oestrogen receptors in all tissues causing oestrogen withdrawal symptoms. In the brain, this causes hot flushes, irritability and depressed mood (easily reducing sexual interest) and in the urogenital organs this causes atrophy (with dyspareunia, loss of desire and arousal disturbances).

15.3.4 Chemotherapy

Depending on the histological and molecular characteristics of the tumour, many patients are advised by the oncologist to have adjuvant therapy; chemotherapy to prevent the recurrence and the spreading of the disease through cancer cells that have not been destroyed by surgery or radiotherapy.

In about 20 % of breast cancers, the cells produce too much of a protein known as HER2. These cancers are more aggressive and they grow faster, but they react well to chemotherapy.

Another 10–20 % are known as ‘triple negative’ because they have no oestrogen and progesterone receptors and they do not overexpress the HER2 protein. Although these cancers react well to chemotherapy, they tend to come back. Depending on the histological and molecular characteristics of the tumour, many patients are advised by the oncologist to have what is called adjuvant therapy. This means a chemotherapy which should prevent the recurrence and the spreading of the disease through cancer cells that have not been destroyed by surgery or radiotherapy.

In patients with metastatic disease, the composition and dosage of chemotherapy are different.

Chemotherapy not only destroys tumour cells, but damages also other tissues with a rapid cell turnover. So the chemotherapy effects include hair loss, gastrointestinal symptoms, fatigue, weight gain and a severe reduction of general well-being, which all may have a negative influence on sexual interest and subsequently on arousal.

Maybe the most important impact on sexual activity is related to the hormonal changes and ovarian failure caused by chemotherapy. After that more than half complain of having no sexual desire. Almost 80 % of breast cancer patients experience some change in sexual functioning up to 5 years after their treatment [7].

15.3.5 The Response to the Disease and the Treatment

The diagnosis and the therapies described can lead to dramatic physical and mental changes which challenge the coping capacity of the patient and the couple. Clinical factors are not the best predictors of quality of sexual life and sexual functioning in (early) stage breast cancer women. Mainly personality and psychological factors affect patient’s sexuality after surgical treatment [8].

Each patient and each couple responds in a specific way to the crisis of the disease depending on the pre-existing vulnerabilities on the one hand and on life experience and resilience of the patient and her partner on the other hand.

The objective of coping is to establish a new stability or better a new equilibrium between the distress caused by the disease and the person’s self perceived capacity to ‘overcome’ the despair and rebuild hope and self-confidence.

If this objective is not reached, the patient may develop a clinical depression which becomes an additional disease of its own with sexual repercussions and treatment repercussions.

15.4 Hereditary Breast Cancer

Up to 10 % of breast cancer patients have a genetic predisposition (BRCA mutation) with a higher risk for the development of contralateral breast cancer and a higher risk for the development of ovarian cancer. Increasingly, many high-risk women who have no cancer yet undergo prophylactic breast surgery, with earlier or later also risk-reducing bilateral salpingo-oophorectomy. Whereas in ‘normal breast cancer’ the approach is to take out as minimal breast tissue as possible and avoid breast reconstruction surgery, in the woman with a hereditary risk both healthy breasts are removed in their entirety, usually followed by reconstructive surgery.

A recent extensive review showed that women after bilateral prophylactic mastectomy were – in general – satisfied with the outcomes, reporting high psychosocial well-being and positive body image. However, nearly all women reported a negative impact on sexual well-being and somatosensory function [9].

When looking at the results of additional prophylactic salpingo-oophorectomy, sexual changes are well-demonstrated, especially the effect of experiencing a sudden menopause.

15.5 A Comprehensive Diagnosis of the Individual Sexual Dysfunctions, Communication About Sexual Health and Treatment in the Breast Cancer Patient

In our clinical work, we have good experience with the ‘5 A Model’, extending the ‘PLISSIT model’ as a framework for sexual health communication with cancer patients. The ingredients are: Ask, Advise, Assess, Assist, and Arrange treatment plan/follow-up [3].

Ask

For the patient, it usually is very difficult to bring up the subject of sexuality in an appointment with the doctor. Luckily, sexuality remains no longer a taboo topic. Well-trained doctors are equipped to properly inquire about changes in sexuality ad intimacy after breast cancer and they are happy to help or refer for specialized counselling or specialist treatment.

Oncology professionals should be aware that their patients may need further explanation on sexual, anatomic and physiologic functioning to help them understand possible sexual side effects, connected to their treatment. Inquiries about sexual issues should be open-ended, respectful. A common example is: ‘How has the treatment affected your sexual life? Sometimes oncologists rather choose to indirectly inquire about treatment-related symptoms that may affect sexual functioning (depression, pain, fatigue) to lead into a more direct conversation about sexual issues.

Advise

This step may convey a strong, brief message about the importance of the problem

By ‘normalizing’ symptoms, one can acknowledge that cancer patients struggle with sexual dysfunctions. Sexual functioning is an important part of quality of life. During this step, patients can be reassured that they can receive adequate help: sometimes patient-education, sometimes psychosexual problem-solving treatment. Dependent on the severity of presented problems, more intensive therapy and/or medical interventions are warranted.

Assess

A brief sexual health assessment of sexual problems is the third step. It can determine who benefits from what kind of services. The ingredients are: take a history of sexual functioning, assess current problems and intensity after breast cancer treatment, and formulate the treatment plan.

Assuming that the patient after inviting her to talk about sexual problems brings forward a complaint like: ‘You know, Doctor, my sex life has become miserable. First of all it is very rare that I feel desire or interest and when it happens it is painful……..My husband understands, he spares me ….even too much….. We have lost intimacy’

How should the healthcare provider respond?

He or she would invite the patient to tell more about her sexual life. How was it before? What did she enjoy? Can she explain more about the changes she has observed?

Give her some time to tell her story, accompanied sometimes by open questions.

The whole consultation should be open but at the same time structured with a clear objective to come to a comprehensive understanding of the individual sexual problem, the type and level of dysfunctions, the distress and the factors causing, contributing or maintaining these problems. Also involvement of the partner is very important.

Assist

On the basis of a brief comprehensive assessment, the healthcare professional may determine what seems most helpful for patient and partner and propose a treatment plan. Many patients primarily need education and information. In this fourth step of the model, patients may benefit from brief sexual counselling that can be offered by trained clinicians in the unit, nurse-practitioners, nurses or social workers. Schover and Jensen well described the parts of brief sexual counselling: education about treatment-related sexual problems, encouraging patients to resume sex during and after cancer treatment, promote an open sexual communication between partners, helping cancer patients to cope with physical handicaps and advise on overcoming specific sexual dysfunctions [10]. It is our experience that only a minority of patients needs further referral to psychologists or medical specialists.

The healthcare provider should at the end of the clinical interview be able to

· Describe from a biopsychosocial perspective the different dimensions of the sexual problem (Desire, Arousal, Orgasm, Pain) with the distress experienced by the patient and the partner

· Have an understanding of the impact of pre-existing sexual difficulties and resources

· Analyse the impact of the disease and therapy on the patient’s sexual function, menopausal problems and fertility issues.

· Understand in what way the patient, the partner and the couple react to the cancer, the treatment and its impact on their sexual life and function

· Refer patients adequately

Arrange

The treatment plan and follow-up.

There is no standardized treatment for the various sexual dysfunctions in breast cancer patients. Treatment has to be individualized and should be based on a process of shared decision making between the professional and the patient (and her partner).

In this fifth step of the 5 A-model, the patient and if possible and her partner should be invited to inform her (them) about the Comprehensive Diagnosis. This consultation serves the purpose to help the patient and her partner understand the sexual problems and difficulties they experience by explaining the biomedical, psychological and relational factors which contribute to the dysfunction.

Then the patient and partner are encouraged to define their objectives of treatment: What would you like to achieve? What should change? What should remain as it is by now?

Consequently, the different therapeutic options are presented according to their proven effectiveness, limitations and side effects. It is recommended to also include general lifestyle information. Exercise and nutrition are important unspecific measures to make the patient feel better in her body and to experience her body as a possible source of pleasure.

15.6 Various Treatment Recommendations

We will distinguish here pharmacological, surgical and psychosexual approaches.

15.6.1 Pharmacological Aspects

Relevant here are the approach to menopausal hot flashes and the vulvovaginal atrophy, both consequences of the treatment-induced hormonal changes.

Many patients on tamoxifen suffer from hot flashes. Especially when causing disturbed sleep they can strongly reduce sexual desire. Whereas most SSRI and SNRI antidepressants effectively reduce the incidence and severity of hot flashes, many also reduce the efficacy of tamoxifen treatment (especially paroxetine and fluoxetine). When the patient on tamoxifen treatment needs an antidepressant, venlafaxine and (es)citalopram are recommended.

At the same time, one should be aware that citalopram and venlafaxine also are known to diminish sexual function. So, proper discussion on these side effects and consequences is warranted.

The use of alternative medications and environmental modifications (e.g. rhythmic breathing, acupuncture, vitamins, avoiding spicy foods and dressing in layers) is widely accepted to help decrease menopausal symptoms, though there is still limited scientific data on efficacy.

Treatment-induced early menopause can decrease the desire for sexual intimacy. Orgasm may be experienced in a different way, it may take longer to get aroused and achieving orgasm. Many women report that orgasms are less intensive than prior to illness and treatment.

Another effect of lowered oestrogen are the vaginal changes with dryness, atrophy and less elasticity, easily making intercourse uncomfortable and painful.

When penetration is desired but disturbed, dyspareunia sometimes can be handled with a good amount of lubricant (preferable on silicone basis) and after ample time to get aroused. When that does not prevent pain, a 3-min pre-intercourse preparation with a tampon containing 4 % aqueous lidocaine allowed the majority of women to enjoy painless penetration [11].

The vaginal dryness that many women experience continuously is not treated by lubricants, but by moisturizers. They hydrate the mucosa and usually keep the vagina moist for several days. This is a non-hormonal way for overall vaginal health and comfort, regardless of sexual activity (although it can also facilitate penetration).

When those strategies insufficiently heal the vulvovaginal disturbances, one could consider local oestrogen, especially low-dose oestriol preparations which are available in Europe and which have shown almost no systemic absorption.

Some patients (and also some oncologists) are adamantly opposed to any such hormonal intervention, fearing again developing breast cancer. Other patients accept a minor risk and aim at recovering a good sexual life. Those are clear cases for shared decision making.

15.6.2 Surgical Aspects

Nowadays, breast cancer surgery has become less and less mutilating, and it has become accepted that patients treated by either mastectomy or breast-conserving procedures have quite comparable survival rates. If surgical treatment has changed the physical appearance, patients should be encouraged to raise the subject of cosmetic and oncoplastic reconstruction possibilities, even years after one has healed from cancer treatment.

Nipple preservation (the technique in which the nipple areolar complex is preserved) becomes widely accepted as oncologically safe. Nipple preservation in mastectomy improves satisfaction with cosmetic results, satisfaction with the appearance and with better sensitivity of the nipple. With that approach women feel less mutilated and have a better body mage after operation (regarding both looking at themselves and being seen naked by the partner after operation) [12]. However, this does not seem to make their sexual life better. Very often women still do not experience any (sexual) sensations in nipples, which for many is one of the most erogenous parts of the breast.

15.6.3 Psychosexual Strategies

There is no standardized evidence-based treatment for female sexual dysfunction in breast cancer patients. The treating health professional should evaluate the physical, psychological and emotional changes regarding sexuality.

Instruments or therapy tools have to be adapted to the individual patient and the individual couple according to the degree of impairment, the acceptability of the intervention, the existing resources of the patient and the couple. After informing them about these different options, the woman (and her partner) should decide what for them is the best treatment to relieve sexual problems.

An important part of recovery is to try resuming sex after breast cancer and its treatment when one feels ready. Resolving sexual changes can be slow. But one has to start somewhere, even just with cuddling on the couch. Despite cancer or cancer treatment the woman (and the couple) should be able to feel again sexually satisfied. Of course that may require remedies from the healthcare professionals, time, patience and an openness to new experiences.

In practice, the psychosexual treatment approach is a mixture of patient-education, cognitive behavioural therapy (CBT), couple therapy, sexual counselling (e.g. sensate focus), communication training, use of sex toys, etc.

The positive effect of 20 week Internet-based CBT on sexual functioning, relationship intimacy, body image, menopausal symptoms, marital functioning, psychological distress and health-related quality of life in breast cancer survivors with a sexual dysfunction (KIS study) has recently been demonstrated by our Amsterdam research group [13, 14].

15.6.4 Remedies After Breast Cancer Treatment

There are a range of practical and lifestyle changes that may help to manage some of the sexual changes after breast cancer treatment, such as early menopause and the effects on sexuality and libido.

· Recommend the patient to be open with her partner, let her explain changes and which remedies or changed sexual patterns might be helpful.

· Sexual health resources to enhance body image (wigs, special lingerie, attachable nipples etc.) should be widely available to help breast cancer patients reclaim their sexual self-esteem.

· Relaxation techniques may help to reduce sexual stress. They can help to make a shift for timely reducing the importance of sexual intercourse and orgasm, at least for a while, and focus instead on intimacy.

· Advise on ways how the partner maybe could create in the patient more sexual arousal (by touching, caressing etc.).

· Let them find positions that give more control over movements and minimize deep penetration. There are quite some ways of non-penetrative sexual encounters.

· Discuss concerns with the partner, explore alternatives.

· Go on a ‘Reinventing your sexual life after cancer’ journey.

· By trying alternative ways to be intimate, patients and partners can maintain a pleasurable and satisfying sexual relationship.

· Try to boost or re-create self pleasure: Whether single or in a relationship, caressing the body may give the woman pleasure again from the body that betrayed her when diagnosed and treated for breast cancer. Masturbation is also a good way to find out if and how sexuality and sensitivity or sensations have changed after cancer treatment

Psychosexual counselling and possible psychosexual therapies should be offered to all breast cancer patients (and their partners), when there are sexual complaints, specifically addressing (possible) anxiety, stress, uncomforting symptoms including hot flashes, sexual comfort in lovemaking, and mood changes from the imposed loss of fertility.

15.7 Breast Cancer in Men (MBC)

MBC is a rather rare disease. Less than 1 % of all breast cancers occur in men. For men, the lifetime risk of being diagnosed with breast cancer is about 1 in 1,000. The breast being seen as a female organ is part of the explanation behind delay in diagnosis, gender confusion and disturbed male identity. Treatment and prognosis of MBC are comparable to female breast cancer. That means surgery, often with dissection of axillary lymph nodes, and in a high percentage also tamoxifen. Tamoxifen treatment can add to the male identity confusion because of hot flashes, low desire and erectile disturbances [15]. For part of the men, the breasts/nipples are sensitive to stimulation and provide sexual pleasure. Removal also disturbs appearance identity and causes stigma in some men [15]. Nipple preservation, if possible, is recommended.

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