Sexuality and the

Oncology Patient

Asfia Mohammed OTR, MOT

 Objectives

• Identify the definition of sexuality and its various

forms and expressions

• Identify common effects of Cancer and its

treatment on patient sexuality

• Understand the OT practitioner’s role in treating

sexuality and intimacy

2
 Sexual Activity

• Activity of Daily Living

• “Engaging in activities that result in sexual

satisfaction and/or meet relational or
reproductive needs”

(AOTA, 2014)

3
 Sexuality

• “…a state of mind, representing our feelings

about ourselves”

• “…how we relate to people of our own gender

and those of the opposite gender, how we
establish relationships, and how we express
ourselves”

(AOTA, 2013)
 Sexual Expressions

• Holding hands
• Flirting
• Touching
• Kissing
• Masturbating
• Sexual intercourse
• And more…

(AOTA, 2013)
 Sexuality and Society

• Religion
• Culture
• Ethnicity
• Education

All effect how sexuality is expressed. Practitioners

must be sensitive to the diversity of these factors.

(AOTA, 2013)
 Sex and Disability

• Sex is associated to the young and attractive

• 50% of disabled people do not have a regular sex

life

• People with physical or intellectual disability are

often regarded as non-sexual

• Persons with disability tend to feel unattractive, or

even less worth of partnership or relations
(Disabled world, 2015)
 Role of Rehabilitation

• Increase quality of life through engagement in

functional and meaningful activity

• Reducing the limitations of disease to empower

engagement

• Provide psychosocial and emotional support to

facilitate participation in meaningful engagement
Sexual Response Cycle
 Normal Sexual Cycle

– Desire
– Arousal
– Orgasm
– Resolution

Cancer and cancer treatment can disrupt any one

or more of these phases.

(UTMDACC, 2012)
 Desire

– Decreased production of sex hormones

– Nausea and fatigue
– Depression, anger, fear, or guilt
– Medications for anxiety, depression, or seizures

(UTMDACC, 2012)
 Arousal

– Decrease in vaginal lubrication

– Slower to respond to sexual stimulation
– Decrease in firmness, reliability , and frequency
of erections
• Changes caused by chemotherapy can be
temporary, radiation changes are usually more
permanent

(UTMDACC, 2012)
 Orgasm

– Less common of a problem

– Typically results from removal of pelvic organs
– Nerve supply changes can reduce sensitivity
– Tension and anxiety interferes with ability to reach
orgasm

(UTMDACC, 2012)
 Resolution

– Few minutes after orgasm when body returns to

normal unexcited state
– Woman with platelets below 50,000 may be at
risk for bleeding during sexual activity
– During chemotherapy there is a greater risk for
getting infection

(UTMDACC, 2012)
 Conception/Fertility

– Prevent pregnancy during chemo and radiation

treatment, both men and women
– Treatment may damage egg cells and sperm
– Sperm-banking before treatment
– Freezing embryos
Impaired Sexuality and/or
Sexual Activity
 Physical Limitations

• Pain
• Deconditioning
• Fatigue
• Hormone status
• Current medications
• Tobacco, alcohol, recreational drugs
• Current medications
• Treatment history
(Hughes, 2008)
 Psychological Limitations

• Depression
• Anxiety
• Poor body image
• Fear
– Dying
– Never ending battle
– Abandonment
– Pain
(Hughes, 2014)
 Psychological Factors

• Shame
• Frustration
• Anxiety
• Lowered self esteem
• Loss of bodily functions
• Misinformation
• Disappointment
• Performance anxiety
• Guilt (Hughes, 2014)
 Disrupted Sexual Response Cycle

Sexual dysfunction is experienced with disruption

of any part of the sexual response cycle
 What is Desire?

• When was the last time you felt turned on?

• Wanted to be intimate?

• Had a sexual thought?

• Got pleasure from any activity

• Had any sexual contact/activity? (Hughes, 2014)

 What can effect desire?

• Testosterone levels
• Chronic fatigue
• Relational discourse exacerbated by illness
• Multiple medications
• Depression

(Hughes, 2014)
 Interventions for Low Desire

• Treat anxiety or depressive disorder

• Address issue of body image
• Manage symptoms
• Erotica
• Re-evaluate medications

(Hughes, 2014)
 What is Arousal?

• Feel sexually excited?

• Can you have an erection?
• Maintain an erection?
• Experience vaginal swelling and lubrication?
• Feel like you could reach an orgasm?

(Hughes, 2014)
 What effects Arousal?

• Stress and anxiety

• Vaginal dryness
• Medications
• Menopause
• Pain, discomfort
• Side effects of treatment

(Hughes, 2014)
 Interventions of Sexual Arousal

• Positional changes
• Redefine erogenous zones
• Videos
• Books
• Sensate focus exercises
• Pelvic floor training
• Kegel exercises

(Hughes, 2014)
 Compensation for Arousal

• Lubricants
• Natural oils
• Moisturizers
• Sex toys
• Dilators (radiation)

(Hughes, 2014)
 Redefine Arousal

• Focus on sensations
• New normal
• Validate taking time to explore new sensations
• Take focus off erections, orgasm and intercourse
• Use all senses
• Focus on receiver’s pleasure

(Hughes, 2014)
 What is Orgasm?

• Orgasm with or without partner?

• With or without erection?
• Changed ejaculation?
• Intensity of orgasm?
• Length of time to achieve orgasm?
 What effects Orgasm?

• Clitoral neuropathy
• Vaginal stenosis
• Dry orgasms
• Retrograde ejaculations
• Psychological or physical stress

(Hughes, 2014)
 Interventions for Anorgasmia

• Sex toys
• Masturbation to reconnect to vaginal tissue or
penial glands and skin
• Treat physical symptoms
• Slow down
• Different positions
• Safer sex
• Plan of sex
(Hughes, 2014)
 Why don’t patients bring it up?

• Fear • Grief/loss
• Anxiety • Performance anxiety
• Depression • Religion
• Guilt/shame • Medical concerns
• Frustration • Financial concerns
• Misinformation • Martial status
• Body changes • Sexual orientation
• Role changes
 Barriers for Health Care Providers

• Lack of education/time
• Diversity
• Professional/personal discomfort
• Poor communication
• Misconceptions about the importance of
sexual/intimacy issues
• Role strain and change
• Performance anxiety
(Hughes, 2014)
Cancer
 Cancer

Can cause
– Lack of energy
– Body appearance
– Chemotherapy side effects
– Infertility
– Early menopause
– Pelvic floor dysfunction
– Lack of sensation/ neuropathy
– Lymphedema
(ACS, 2013)

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 Breast Cancer

• Hormone changes
• Chemotherapy
• Lymphedema
• Body image
• Surgical intervention
• Metastatic disease
• Sensory changes
 Head and Neck Cancers

• Post surgical activity limitations

• Facial swelling
• Body image
• Hematoma risk
• Lack of verbal communication
• Delicate surgical procedures/reconstruction
• Postural changes
• Limited ROM, strength and deconditioning
 Stem Cell Transplant

• Studies identify a decrease in sexual desire post

SCT
– Hormonal changes: arousal and desire
– Excessive fatigue
– Pain
– Changes in self-image
• Fertility and Birth control
• Genital GVHD
• Weakened immune system
– Safe sex
– Platelet count above 50
(Thygesen, K.H., Schjodt, I., & Jarden, M., 2012).
 Prostate Cancer

• Erectile dysfunction
– nerve sparing
– Injections
– Medications
– Erection pumps

There are separate nerves for erection and orgasm

 Bone Tumors

• Osteochrondroma- benign, young adult, usually

shoulder or knee bony spurs
• Osteosarcoma- most common malignant, young
adults, usually in limbs and pelvis
• Chondrosarcoma- 2nd most common malignant,
usually found in cartilage cells of limbs, spine and
pelvis
• Ewing’s Sarcoma- commonly found in middle
portion of long bones, children and adolescents
• Multiple Myeloma- develops in the plasma cells of
bone marrow, weakens bones
 Bone Tumors

• Pain and tenderness

• Activity limitations and restrictions
• Limited weight bearing
• Limited ROM
• Limb removal
• Radiation/surgical intervention
 Muscle Tumors

• Rare however malignant muscle tumors spread

rapidly and have a high mortality rate
• Leimyoma- benign, starts from walls of blood
vessels
• Rhabdomymoa- benign, skeletal muscle, common
cardiac tumors, infants and children
• Leiomyosarcoma- adults, malignant, smooth
muscle
• Rhabdomyosarcoma- children, malignant skeletal
muscle, limbs, head and neck or reproductive
organs
 Muscle Tumors

• Surgical interventions
• Start off painless then increase in pain
• Radiation and chemo for malignant tumors prior
to surgery to decrease size or after to ensure all
cells are removed
• Decreased ROM
• Decreased strength
• Post-surgical interventions
 Gynecological Cancers

• Originate in women’s reproductive organs

• 5 main types
– Cervical
– Ovarian
– Uterine
– Vaginal
– Vulvar
– Fallopian tube (rare)
 Gynecological Cancers

– Radiation (internal and external)

• Fatigue, skin reactions, nausea, diarrhea, bowl obstruction,
abdominal pain
• Loss of vaginal elasticity and vaginal narrowing (dilators)
– Surgery
• No source of sex hormones, premature menopause- hot
flashes, vaginal dryness
• Unable to conceive
– Chemotherapy
• Infertility
• Fatigue
• N/V
• Hair loss
• cachexia
Lymphedema can be experienced
Patient Perspective
 Self Assessment

• Explore your own levels of comfort

• Identifying your views with various gender
identities, roles, sexual orientation, and intimacy
patterns
• Remember all relationships are not
monogamous and heterosexual
• What are some terms you know?
 Therapeutic use of Self

• Body language
– Determines how your patient will respond to you
– Maintain eye contact, avoid crossing your arms,
and speak with a calm confident voice
– Pay attention to the patient’s body language for
cues
– Avoid making the patient feel judged or
threatened
 Therapeutic use of Self

• Perfect your communication skills

– Use narrative and clinical reasoning to build
therapeutic relationship
– Interpersonal communication will shift power to
the patient to enable more control on the situation
 Therapeutic use of Self

• Therapeutic listening
– Gather information
– Provide validation and support
– Some simply require permission
 Activity

• Conduct a Self Assessment (handout)

– What topics create feelings of unease or
embarrassment?
– What are your sexual values? Do your personal
beliefs prevent you from being unbiased toward
others with different sexual values from your own?
– What is the role of sex in your relationship(s) and your
sexual orientation? Can you be unbiased against
others with others that are different from your own?
– What do you feel is the role of the health
professionals?
Intervention
 Intervention

• Basic part of the human condition

• Addressed with all clients
– Older adults
– Lesbian, gay, bisexual, or transgendered
– Physical disability
– Developmental disabilities or delay
– Other recipients of OT services

(AOTA, 2013)

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 Holistic approach

• “By acknowledging the importance sexuality

plays in all of our lives and displaying sensitivity
to the personal nature of this ADL, occupational
therapy practitioners help ensure that all aspects
of their clients’ lives are addressed in therapy”

(AOTA, 2013)

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 Approaches to Intervention

• Health promotion
– Support groups, educational programs, and stress-
relieving activities
• Remediation
– Restoring skills: ROM, strength, endurance, effective
communication, and social engagement
• Modification
– Changing environment or routine
– Grading/adapting task
– Compensatory strategies
(AOTA,2013)

55
 Intervention Considerations

• Safe place to address sexuality

– Allowing expression of fears and concerns
– Assisting with problem solving
• Therapeutic use of self
– Empathy, sensitivity, openness
• Any setting
– Homes, group homes, nursing homes, rehabilitation
centers, community mental health centers, pain
centers, senior centers, hospitals, retirement
communities, etc…
(AOTA, 2013)

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 Intervention Considerations

• Understand interaction between the person,

environment, and activities they engage in

• Importance of habits, roles, and routines

• Just right challenge/modification of activities

• Minimize dysfunction- maximize engagement

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PLISSIT Model of Sex Therapy
 PLISSIT Model of Sex Therapy

• Created by psychologist Jack Annon in 1976

• Four basic levels of sex therapy

– Permission
– Limited Information
– Specific Suggestions
– Intensive Therapy

• Able to separate the cases that need little

intervention from those that need more

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 PLISSIT

• Permission
– Legitimize concerns with sexuality
• Limited Information
– How disability affects sexuality and sexual function
• Specific Suggestions
– Compensation and adaptation recommendations
• Intensive Therapy
– May require another professional
– Collaboration with significant other

(Friedman, 2014)

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Case Study
 Case Study

Leslie is a 40 year old woman with stage IV breast cancer that is

metastatic to her spine and lung.

Leslie presents in the hospital after a double mastectomy with

reconstruction. Leslie has a long term partner and no children.
Leslie works as a fashion designer and enjoys traveling and
shopping. She lives in a condo with elevator access and a walk
in shower.

Leslie‘s primary team consulted occupational therapy to assist

with early mobilization and to educated her in post-surgical
activity restrictions. During her evaluation Leslie was assisted
out of bed and to the bathroom for grooming. While brushing
her teeth Leslie mentioned to the therapist that she was curious
what she looked like under her gown.

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 Permission

• Leslie expresses curiosity with her body image

and does not know what to expect.

• What can the practitioner say to Leslie to soothe

her concerns and explore how to proceed and
what to expect?
 Limited Information

• After providing permission what information can

the practitioner provide?
• Where can this information be found?
 Specific Suggestions

• Steps you should take prior to providing specific

suggestions
1. Conduct a thorough assessment of sexual history

2. Comfortable surroundings

3. Problem solve with the patient

• Energy conservation
• Positioning
• Environmental modifications
• Other interventions?
 Intensive Therapy

• Will Leslie benefit from intervention from another

discipline?

• Is there somewhere else she can go for more

therapy?
Treatment Intervention
 Treatment Considerations

• Positioning
• Sexual Devices
• Positioning Equipment
• Lubrication

Pleasurable: sexual device manual for persons with disabilities

(Naphtali, K., et al., 2009)
Positioning
Positioning
Positioning
Positioning
Sexual Devices
Positioning Equipment
Positioning Equipment
Positioning Equipment
Lubrication
 Questions?

Thank you!

[email protected]
 Resources

• Most diagnoses have references available

online
• Growing number of OT related publishing
• Judith Dicker Friedman, MA, OTR/L
• AOTA
• Shaniff Esmail, PhD, MscOT– University of
Alberta, Canada

79
 References
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American Occupational Therapy Association.(2014).Occupational therapy practice framew ork: Domain and process (3rd ed.).American Journal of
Occupational Therapy, 68(Suppl.1), S1–S48

American Occupational Therapy Association. (2013). Sexuality: and role of occupational therapy.

Chen, M., Mohammed, A. M., Moorman, C. (2012). Women w ith Multiple Sclerosis and the occupational therapists w ho treat them: Experiences of sexual
dissatisfaction, quality of life, and sexual rehabilitation. (Unpublished masters research). Midw estern University, Illinois.

Disabled World. (2015-03-01). <a href="http://w ww.disabled-w orld.com/disability/sexuality/">Disability Sexuality: Information on Sex & Disabled Sexual
Issues</a>. Retrieved 2016-05-15, from http://w ww.disabled-w orld.com/disability/sexuality/

Esmail, S., Knox, H., Scott, H. (2010). Sexuality and the role of the rehabilitation professional.
International encyclopedia of Rehabilitation.

Keilhofner, G. (2008). Model of human occupation: Theory and application. Baltimore, MD: Lippincott Williams & Wilkins.

Friedman, J. D. (2014). Occupational therapists can provide often-neglected assistance or intervention to

patients. Sexuality and Disability, 22, 43.

Miller, W . T. (1984). An occupational therapist as a sexual health clinician in the management of spinal
cord injuries. Canadian Journal of Occupational Therapy, 51, 172-175.

Thygesen, K.H., Schjodt, I., & Jarden, M. (2012). The impact of hematopoietic stem cell transplantation on sexuality: A systemic review of the literature. Bone
Marrow Transplantation, 47, 716-724.

Parkinson, S., Forsyth, K., & Kielhofner, G. (2004). A users manual for the Model of Human Occupation Screening Tool (MOHOST version 1.1). Chicago:
College of Applied Health Sciences, Model of Human Occupation Clearinghouse, Department of Occupational Therapy, University o f Illinois.

The University of Texas MD Anderson Cancer Center (2012). Sexuality and your cancer treatment.

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