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APOS PSYCHOSOCIAL
POCKET GUIDE

A quick reference resource for psychosocial professionals

The information contained in this guide does not constitute medical advice and is not intended to replace a healthcare provider’s independent medical judgment regarding the treatment or management of individual patients.

Table of Contents

Sexual Health

Author(s): Mary Kay Hughes, RN
Editor(s): Beth Gardini Dixon, PsyD, Sharla Wells-DiGregorio, PhD

Definition:  As the number of cancer survivors increases, there are more people affected by the long-lasting consequences of cancer diagnosis and treatment (1).  An estimated sixty percent of cancer survivors experience sexual health changes during active treatment or post-treatment. Sexual health is defined by the World Health Organization (2022)  as “A state of physical, emotional, mental, and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity and should be safe, consensual and pleasurable.” Additionally, sexual dysfunction is not limited to changes in those organs associated with sexual response, and is characterized by a

  • disturbance in sexual desire
  • psychophysiological changes involved in the sexual response cycle which can cause
    • marked distress
    • interpersonal difficulty

Sexuality is a quality of life issue that is a highly private and intimate topic closely associated with a person’s individuality and distinctiveness and is complex and difficult for health professionals to address (3). It represents one of the first elements of daily living disrupted by a cancer diagnosis, yet is under addressed in the cancer setting.

Guidelines:

Guidelines of the American Society of Clinical Oncology (4) and the Journal of the National Comprehensive Cancer Network (5), both updated in 2017, agree that the oncology team should initiate a discussion of sexuality and cancer during treatment planning. All patients, including sexual and gender minority (SGM) populations, should be assessed for sexual dysfunction regardless of partner availability.  It is important to remember that all patients should have the opportunity to discuss sexual matters with their health care professional regardless of

  • age
  • sexual orientation
  • marital status
  • or life circumstances (6).

Screening and Risk Factors

Risk Factors

  • Disease and treatment-related factors (e.g., pelvic radiation, pain, fatigue, sleepiness)
  • Medications (e.g., hormone suppressants)
  • Mental health issues
  • Relationships issues

Evaluation and Diagnosis

By using Annon’s PLISSIT Model of sexual assessment, (6) the clinician uses open-ended questions to open the discussion about sexuality with the patient..

Table 1          Annon’s  PLISSIT Model (7)

Permission

 

 

 

Limited

Information

 

Specific

Suggestions

 

Intensive

Therapy

 

Give permission to talk and think about sexuality and cancer at the same time:
“What sexual changes have you noticed?”              “Sexually, how are things going?”
“Tell me about any sexual changes.”       “How has this affected you sexually?”

 

Tell the patient about sexual side effects:  Lower libido, Erectile dysfunction, alopecia, vaginal dryness, menopausal symptoms, change in orgasm.

 

Make suggestions to help with sexual dysfunction i.e., personal lubricants and moisturizers; medications, position changes, sensate focusing, safer sex.

 

Refer to pelvic floor physiotherapist, marital therapist, sexual therapist or psychotherapist.

 

Click here to view table as PDF

 Several valid measures can be used to assess for changes in sexual functioning.

  • Unfortunately, there are no valid measures focused on SGM sexual outcomes (8).
  • Global Measure of Sexual Satisfaction (GMSEX) (9)
  • International Index of Erectile Function (10)
  • Brief Index of Sexual Functioning for Women (11)
  • One item: “How satisfied are you with your sex life?”.

 

Table 2: Treatment side effects on sexuality (1, 6, 7, 12, 13,

              Side effects Sexual effect

Alopecia/ change in body image

 

One of the most devastating events, often resulting in feeling unattractive, less “sexy”; May lower libido and can affect arousal.

Altered cognition

 

May be disinhibited; hard to remember last sexual encounter; may be hard to focus on partner’s pleasure. Affects libido.
Changed orgasms

Frustration, not as powerful and takes longer. Loss of ejaculate

Affects libido, orgasms

Change in vaginal elasticity Can cause dyspareunia, makes insertive sex painful. May not be able to accommodate male partner. Affects libido, arousal, and orgasm.
Depression Decreased sexual interest and initiation of sexual activity; May have poor social interaction. Affects libido and arousal.
Diarrhea Perineum tender, hard to receive anal intercourse or be stimulated anally.  If colostomy present may be hard to control flow of stool.  May affect libido, arousal and orgasm.
Dyspnea Doesn’t have enough breath to complete sexual activity. Affects arousal and orgasm.
Erectile dysfunction (less firm erections)

Makes penetrative sexual activity impossible in men who have sex with men (MSM). Change in sexual roles and practices. Changes to prostate and rectal sensation. Spontaneous sexuality activity no longer possible if using erectile functioning aids.

Affects arousal, libido, and orgasm

Fatigue Not enough energy to perform; worried about enough stamina to complete sexual activity. Affects libido, arousal, and orgasm.
Fibrosis Impairs movement if in arm; if lung, hard to breathe; if vagina, may cause dyspareunia.  Affects libido, arousal, and orgasm.
Hot flashes Impairs physical closeness, sleep. Affects libido, arousal, and orgasm.

Immunosuppression

 

Afraid to kiss, perform oral sex, feels social isolation, HPV may be activated after being dormant for years which can cause suspicion of the partner. Affects libido and arousal.
Incontinence Embarrassment, afraid to initiate sexual activity. Affects libido, arousal and orgasm
Infertility May feel sexual activity is selfish, only for fun and not to procreate; feels like “used goods”, disappointed, grieving. Affects libido.
Insomnia Can cause fatigue, affects mood and energy level. May affect libido and arousal.
Low libido Doesn’t have sexual dreams, fantasies, want to initiate sex or engage in sexual activities. May go through the motions to please partner.
Lower testosterone Doesn’t initiate sexual activity, no sexual dreams or fantasies. erectile dysfunction; smaller penis, small testes. Elevated body mass index (embarrassment); high blood pressure; Low libido.
Malnutrition/cachexia Too weak to initiate or engage in sexual activities. Affects libido, arousal, and orgasm.
Menopausal symptoms Vaginal dryness, lower libido, dyspareunia, delayed orgasm.
Musculoskeletal symptoms Focused on pain control which makes it hard to perform sexually.  Affects libido, arousal, and orgasm.
Mucositis Hard to kiss or engage in penetrative sexual activity:  mouth, vagina & anus may be tender. Affects libido and arousal.
Nausea/vomiting Hard to kiss, perform oral sex. Affects libido and arousal.
Osteoporosis

Less agile, more pain, risk of fracture. Less options with sexual positions.

Affects arousal and orgasm.

Ovarian failure Infertility, early menopause. Affects libido, arousal, and orgasm.
Pain (phantom, neuropathic, poorly controlled) May have side effects from medication (sedation, dry mouth, constipation) Affects libido, arousal, orgasm
Peripheral neuropathies Can affect clitoris and the glans causing numbness.  Hard to use hands and may make masturbating and foreplay difficult. Hard to feel partner’s body, skin and may be painful. More falls. Affects arousal.
Poor body image (discolored skin, rashes, scars, lymphedema, ostomy, skin thickening) Feels unattractive, unwanted, not “sexy”. Feels embarrassed by body changes. Affects libido and arousal.
Taste changes and dry mouth Hard to kiss, difficult to perform oral sex. Affects libido and arousal.
Vaginal dryness Painful sex discourages further sexual activities. Affects libido, arousal, and orgasms.
Weight distribution changes Doesn’t feel attractive, may affect breathing during sexual activity. Affects libido, arousal, and orgasms.

Click here to view table as PDF

 

Treatment

Interventions are aimed at preservation or recovery of sexual intimacy after treatment (13).

Table 3 Treatment of Sexual Dysfunction 4

Alibido (hypoactive sexual desire)

•      Medicate physical symptoms (pain, nausea, fatigue, etc.)

•      Treat anxiety and depression or change antidepressants (from SSRI),

•      Refer to sexual therapist

•      Regular exercise

•      Shower together

•      Testosterone supplement or refer to endocrinologist

•      Estrogen supplements

•      L-arginine for women who can’t take estrogen (anecdotal)

•      Schedule sexual encounters

•      Erotica- books, movies

Dyspareunia

•      Use lubricants on both partners

•      Use vaginal moisturizers

•      Refer to pelvic floor physiotherapist

Female sexual arousal disorder

 

•      Water soluble/silicone vaginal lubricants

•      Vaginal moisturizers

•      Natural oils (coconut, almond, olive)

•      EROS-CTD®- a vacuum device for females

•      Vibrators

•      Vaginal dilators

•      Spacer rings on long penis

•      Positional change

•      Treat depression and anxiety

•      Sensate focus exercises

•      Masturbate

Male erectile disorder

 

•      Oral medications (PDE5 inhibitors),

•      Vacuum constriction device

•      Penile injections

•      Penile implant

•      Penile band

•      Vibrator

•      Positional change

•      Masturbate

Orgasmic disorder

 

•      Change antidepressants (SSRIs can delay orgasm)

•      Vibrators

•      Masturbate

•      Positional change

•      Refer to sexual therapist.

•      Psychostimulants

•      Sensate focus exercises

Click here to view table as PDF

Bottom Line/Conclusions

Sexuality is an essential quality of life issue that is not often addressed by the practitioner, but it is paramount to handle it throughout the cancer continuum.  This acknowledges the practitioners’ willingness to assist the patient with sexuality issues if they are important to the patient. Thus, preventing the patient from suffering in silence thinking they are the only one with sexual concerns.

 

References

  1. Wang F, Luo D, Fu L, Zhang H, Wu S, Zhang M, Zhou H, Sun T, Chen X (2017) The efficacy of couple-based interventions on health-related quality of life in cancer patients and their spouses: a meta-analysis of 12 randomized controlled trials. Cancer Nurs 40: 39-47. https://doi.org/10.1097/NCC.0000000000000356
  2. WHO . Redefining sexual health for benefits throughout life. 2.11.22, WHO.org accessed 5.5.22.
  3. Kissane D, Bultz B Butow P, Bylund C, Noble S, Wilkinson S, (2017Oxford textbook of communication in oncology and palliative care. 2nd edn. Oxford: Oxford University Press:
  4. Carter J, Jacchetti C, Andersen BL, et al.(2018) Interventions to address sexual problems in people with cancer: American Society of Clinical Oncology Clinical Practice Guideline Adaptation of Cancer Care Ontario Guideline. J Clin Oncol;36:492-511.
  5. Denlinger CS, Baker KS, Baxi S, et al. (2017) Survivorship Version 2.2017. J Natl Compr Cancer Netw:15:1140-63
  6. Leiblum S, Symonds T, Moore J, Soni P, Steinberg S, Sisson M. (2006) A methodology study to develop and validate a screener for hypoactive sexual desire disorder in postmenopausal women. J Sex Med;3:455-464.
  7. Annon JS (1976). The PLISSIT Model: A proposed conceptual scheme for the behavioral treatment of sexual problems. J Sex Edu and TherMNB, 2, 1-15.
  8. Pratt-Chapman M, Alpert A, Castillo D. (2021) Health outcomes of sexual and gender minorities after cancer: a systematic review. Systematic Reviews:10:183https//doi.org/10.1186/s13643-021-01707-4
  9. Byers, ES & MacNeil s. (2006). Further validation of the interpersonal exchange model of sexual satisfaction. J Sex & Marital Ther, 32, 53-69.
  10. Rosen R, Cappelleri J, Smith M, Lipsky J, & Pena B. (1999).Development ad evaluztion of an abridged 5-item version of the International index of Erectile Function as a diagnostic tool for erectile dysfunction. Intl J Impo Res,,11, 219-326.
  11. Taylor J, Rosen R, & Leiblum S. (1994). Self-report assessment of female sexual function: Psychometric evaluation of the Brief Index of Sexual Functioning for Women. Arc Sex Beh, 23, 627-643.
  12. Donovan K, Gonzalez B, Nelson A, Fishman M, Zachariah B, Jacobsen P. (2018). Effect of androgen deprivation therapy on sexual function and bother in men with prostate cancer: A controlled comparison. Psycho-onc, 27:316-324. DOI: 10-1002/pon.4463
  13. Wittmann D.  (2016). Emotional and sexual health in cancer: partner and relationship issues. J Supp and Pall Care: