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Running head: THE SEXUAL EDUCATION NEEDS OF CANCER PATIENTS

The Sexual Education and Counseling Needs of Cancer

Patients: Are They Being Met?

Travis Sky Ingersoll

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Abstract

The diagnosis and treatment of many types of cancer can deeply affect an individual’s

sense of sexuality. This research paper documents the many physical and psychological

effects on patients’ sexuality that cancer and its treatment engender. The educational and

counseling needs of cancer patients are discussed, and the available programs aimed at

assisting medical professionals in addressing those needs are reviewed. The success of

medical health professionals in assessing, providing information for, and treating the

sexual health issues of cancer patients is examined. This paper concludes with

suggestions to better meet the sexual health needs of cancer patients in the future.

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The Educational Needs of Cancer Patients: Are They Being Met?

The diagnosis of cancer is often a traumatic event, affecting many aspects of a

person’s life. A person’s sexual health, in particular, is an area that is often affected for

years after treatment has ended (Fleming & Kleinbart, 2001). Sexual health not only

encompasses the physiological aspects, but also the states of mental, social and emotional

well-being relating to sexuality (Katz, 2005). When a person’s physical appearance is

altered by cancer, their self perceptions of attractiveness, worthiness, and ability to

engage in sexual activities may be negatively impacted (Mick, Hughes, & Cohen, 2004).

Cancer and its treatment may bring along with it a variety of sexual health problems.

Prostate cancer may lead to erectile dysfunctions, orgasmic disruption, and loss of ability

to ejaculate (Perez, Skinner et al. 2002; Martinez, 2005). Gynecological cancer’s effects

often include the early onset of menopause, vaginal dryness and atrophy (Bourgeois-Law,

& Lotocki, 1999; Ferrell, Smith et al., 2003). Both men treated for testicular cancer and

women treated for breast cancer have been found to experience body image problems,

relationship difficulties, feelings of loss of control, and have their concepts of femininity

and masculinity threatened. In addition they may experience a loss of desire and/or

sexual arousal, decreased genital sensitivity, or increased pain during intercourse

(Fleming, & Kleinbart, 2000; Jongker-Pool, Hoekstra et al., 2004; Scott, Halford, &

Ward, 2004; Wimberly, Carver et al., 2005).

The negative consequences of cancer and its treatment not only affects the sexuality of

the person who has cancer, but also their intimate partners. Many studies have

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emphasized the protective role that the partners of cancer patients play in their healthy

recovery from cancer treatment. The ability to maintain intimate relationships plays an

important role, by helping to buffer an individual from the negative psychological effects

that the sexual health problems associated with cancer may bring about (Bourgeois-Law,

& Lotocki, 1999; Fleming, & Kleinbart, 2001; Helgeson, & Cohen, 1996; Perez, Skinner

et al., 2005; Scott, Halford, & Ward, 2004; Wimberly, Carver et al., 2005) Research

indicates that for those in committed relationships, the partner’s acceptance of their

bodies, and how a partner responds to their health conditions are major factors in their

psychosocial recovery (Bourgeois-Law, & Lotocki, 1999; Ferrell, Smith et al., 2003).

Having emotional support is a crucial component in the improvement of affect,

adjustment, and overall quality of life for many cancer patients. It is also a strong

predictor of emotional, marital, and sexual satisfaction (Fleming, & Kleinbart, 2001;

Helgeson, 2005; Helgeson, & Cohen, 1996; Scott, Halford, & Ward, 2004).

Cancer patients and their significant others would undeniably benefit from counseling

and comprehensive discourse pertaining to the challenges facing their sexuality. To meet

these important needs, there exists a variety of curriculum available for health care

professionals to utilize. The ALARM, PLEASURE, PLISSIT, and BETTER educational

models can all be extremely useful to health care providers when confronted with the

sexual health concerns of their patients. Common themes incorporated within these

models include; bringing up and giving patients permission to discuss sexuality;

explaining sexuality as an integral aspect of healthy living; communicating that issues

surrounding sexuality can be brought up at any time; reviewing and combating the sexual

side effects of treatment, and referring patients to sex therapists (Anderson, 1990; Annon,

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1974; Krebs, 2001; Mick, Hughes, & Cohen, 2003; Mick, Hughes et al., 2004; Shell,

2001).

To specifically address the issues of partners of cancer patients there exists a program

titled CanCope. CanCope is an intervention designed by Scott, Halfield, and Ward (2004)

aimed at helping couples work together to cope with cancer and support each other.

CanCope has produced significant increases in observable supportive communication. It

has also been found to lessen the chance that individuals in an intimate partnership will

distance themselves from each other. CanCope is the first intervention shown to enhance

sexual intimacy, sexual self-schema, and women’s perceptions of their partner’s

acceptance of their body.

With the abundance of literature documenting the possible sexual health concerns of

cancer patients and their significant others, and with a wide selection of curriculum

available for health care professionals to help assess sexual functioning and assist in the

sexual recovery from certain types of cancer, one could surmise that those needs are

being met. Unfortunately this is not the case. In the words of an ovarian cancer survivor,

“Sexuality? No one seems to want to talk about this topic because I don’t feel that many

doctors feel comfortable, or have the necessary information” (Ferrell, Smith et al., 2003,

p. 647). In fact, literature gleaned from many academic and scientific disciplines mirror

this sentiment.

Many cancer patients have been found to prefer that their physician’s discuss with

them how sexuality may be affected by their medical treatment. Instead of addressing

their issues, the physician often suggests that they see a sexual therapist. What the

patient often desires is simply the provision of sexual education, so they often refuse to

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be seen by a sex therapist (Bourgeois-Law, and Lotocki, 1999; Vincent et al., 1975).

Physician’s discomfort discussing topics of sexuality is well documented (Bourgeois-

Law, and Lotocki, 1999; Finlay, 2001; Hordern, 2000; Katz, 2005; Schover, 1999b).

The discomfort surrounding topics of sexuality and the refusal of many cancer patients

to be seen by a sexual therapist, translates into a situation where pertinent information

regarding the sexual concerns of people is not being communicated. In a study by

Bourgeois-Law and Lotocki (1999), nearly 50% of respondents stated that little or no

information was presented about the possible effects of cancer treatment on sexuality,

and for the remaining percentage that were given such information, most were not

satisfied with the amount received. Of the cancer patients interviewed, the greatest

priorities of need were education about how their sexuality may be effected by treatment,

how to prepare for the feelings that may come up surrounding the effects of treatment and

cancer, and dealing with the partner’s feelings in reaction to cancer and treatment.

Young-McCaughan (1996) found that 81.8% of women treated for breast cancer

reported that their medical providers had never even broached the subject of sexuality

concerns. This neglect of providing sexuality information useful in the recovery of breast

cancer patients was also cited by Fleming and Kleinbart (2001). Findings also suggest

that the sexual health information needs are not being adequately met for a large

percentage of women with gynecological cancer. Services addressing the effects of

treatment on sexual relationships and on individual’s sense of sexuality was also found to

be lacking (Bourgeois-Law, & Lotocki, 1999).

Jonker-Pool, Hoekstra et al. (2004) found that over half of the interviewed patients

with testicular cancer were dissatisfied with the support and information they received

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concerning sexuality. In a study addressing the sexual problems many women

experience as a result of ovarian cancer treatment, the lack of comfort presenting such

problems to doctors, and the doctor’s lack of initiative bringing up the topic were

significant barriers to overcoming such issues (Ferrell, Smith et al., 2003).

The high levels of dissatisfaction with the lack of sexual information received, and the

general discomfort that cancer patients may feel towards bringing up such a topic,

suggests that medical staff may need to be more pro-active in addressing topics of

sexuality, either before or after treatment (Bourgeois-Law, & Lotocki, 1999; Ferrell,

Smith et al., 2003). The need for physicians to initiate more discussions about sexuality

with their cancer patients, coupled with the overall lack of comfort discussing such topics

that many physician’s feel, calls attention to an important dilemma. How do we help

health care professionals become more comfortable bringing up topics of sexuality with

their patients?

One obvious way in which to address this problem is by providing curriculum to

medical students and professionals, aimed at raising awareness of patient’s sexuality

problems after radical treatments for cancer. In an article by Finlay (2001), a half day

curriculum given to undergraduate medical students in the U.K., focused on doing just

that. The curriculum presented to the students included various topics such as; the

importance of respect for an individual patient’s perception of self; the impact of

treatment on patient’s body image; depression as a result of body image disturbances;

various cancer treatments and their effects on sexuality; and how to give patients the

opportunity to discuss sexual concerns. Evaluations by questionnaires five months after

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the course’s conclusion indicated a significant positive impact on medical student

attitudes toward addressing sexuality concerns with patients.

Although I performed an extensive search trying to locate such an educational

intervention for medical students here in the United States, I was unable to find any such

program. To me, all of the literature pertaining to the sexual education and counseling

needs of cancer patients exposes a significant need for mandatory sexual education

curriculum to be included in every medical school. With cancer patients tending to look

to their physicians regarding their sexual health concerns, and with physicians often

feeling too uncomfortable to discuss such topics, how else are we to solve the problem

without making sexuality education training mandatory for medical students?

Another avenue to explore, with regards to providing comprehensive sexual health

interventions to cancer patients, would be the employment of sexual health professionals

in medical and/or cancer treatment centers. This would not only provide a valuable

resource for cancer patients as well as medical professionals, but answer another issue

stated by physicians regarding questions as to why sexual education needs are often

neglected; a lack of time (Bourgeois, & Lotocki, 1999; Flemming, & Kleinbart, 2000).

Research proved unfruitful when I searched for examples of sexual health professionals

being a part of medical centers or treatment teams.

With so much need for sexuality educators, counselors and therapists in medical

training institutes and treatment centers, it is unbelievable to me that the provision of

curriculum about medical patient’s sexuality concerns is not mandatory for medical

students. I am also surprised at the lack of evidence of employed sexual health

professionals within cancer treatment centers. However, my findings point to an area

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where my skills as a highly trained sexual educator should be in high demand. Perhaps

our society is moving in a direction where human sexuality professionals and the unique

skills they possess will be utilized more frequently by the medical field. I believe that

medical professionals and the patients they serve would benefit greatly by making human

sexuality professionals a permanent part of medical treatment teams and medical training

institutions. Whether or not human sexuality education becomes more mainstream in the

near future, the important issues surrounding the inadequacy of the medical field to

address the sexual health concerns of cancer patients needs to be addressed.

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