“I have lost my breasts and my ovaries. Am I still a woman? Everyone around me says that I should be grateful to be alive. But I feel like I lost everything that is important to me." – A 38-year-old metastatic breast cancer patient

“My erections are not firm after my surgery. I do not want to touch my partner because I do not want him to think that I want to be sexual." – A 52-year-old prostate cancer survivor

“I used to feel a lot of sexual desire and confidence. After my treatment that part of me is gone. I do not feel sexy anymore." – A 26-year-old lymphoma survivor

“My body is covered with scars. I look like Freddie Krueger. How can I show my body to my partner?" – A 62-year-old metastatic liver cancer patient

What I See in my Practice With Cancer Patients and Survivors
As a clinical social worker and relationship and sex therapist, I hear these questions and comments in my clinical practice and during my public presentations to cancer patients and survivors. Cancer treatments such as surgery, radiation, chemotherapy and hormonal therapy often result in sexual side effects such as hair loss, weight gain, loss of sensation, sexual pain, hypersensitivity, desire, arousal and orgasmic issues. It is compounded by the fact that the cancer patients are not educated about the sexual side effects by health care providers who administer the treatments. Hence, the post-treatment sexual side effects come as an unpleasant surprise to many of the patients who are emotionally and physically unprepared for such changes.

One example of such a devastating side effect is the acute vaginal dryness and atrophy experienced by breast and gynecological cancer survivors who have undergone chemotherapy and/or hormonal therapy. Without any preparation for such a side effect, women often endure painful intercourse without knowing that it is caused by their treatments. Sexual pain leads to loss of desire and sexual avoidance. Similarly, most cancer patients and survivors learn belatedly that treatments affect their sexual function in severe and unexpected ways.
    
The sexual side effects tend to alter the patient’s sexual self-schema, their sense of self as sexual beings. Cancer patients and survivors often experience the altered sexual self-schema as a devastating sexual loss because it represents a loss of their former self as healthy sexual beings. Most often, family, friends and/or health care providers do not acknowledge these sexual losses. Cancer patients and survivors often complain about health care providers who ignore questions about sexual side effects or advise them to be grateful for being alive. Hence, their sexual losses are often ignored and not acknowledged.

Sadly, cancer patients and survivors are forced to suppress their feelings of grief and loss about their sexual function because they are not given permission to grieve this loss. Sexual losses that are not addressed with adequate seriousness delay coping with sexual problems.

Health Care Providers’ Responsibility to Patients’ Sexual Health
Health care providers who administer cancer treatments have a responsibility to prepare their patients for possible sexual side effects and temporary and permanent sexual losses. For instance, prostate cancer patients who are undergoing prostatectomy need to be educated about possible sexual function changes such as erectile difficulties, sexual pain, numbness, ejaculatory difficulties, etc. Health care providers need to offer information about sexual health as an important step in regaining and maintaining quality of life before, during and after cancer treatments.

How Can Health Care Providers Support Their Patients’ Sexual Health?
Health care providers can alleviate sexual health concerns of cancer patients and survivors by providing them with information about sexual side effects and appropriate referrals as needed.

• Health care providers need to educate themselves about the sexual side effects of cancer treatments. Research shows that they often do not bring up sexuality during their appointments because they do not feel like they have the necessary expertise in this area. A fully integrated sexuality curriculum would include three areas of didactic and experiential training: desensitization and resensitization, knowledge building and skill development. It is critical that health care providers develop the affective skills necessary to speak about sexuality without embarrassment. I recommend that health care providers attend sexuality training that includes a SAR (Sexual Attitude Reassessment). SAR is a process-oriented, structured group experience to promote participants’ awareness of their attitudes, feelings, values and judgments related to sexuality and how these internal processes affect them professionally and personally. Health care providers interested in such training can find training programs on www.aasect.org
   
• Health care providers often have very limited time to see their clients. It may be difficult to ask questions about sexuality within the appointment time. I recommend that medical offices include a form specifically for questions about sexual health. It will allow patients to express their sexual concerns. Additionally, it will send a message to the patients that sexual health is important and that they can bring it up with their health care provider. It implicitly provides permission for the provider and the patient to speak about sexuality during their appointment.
   
• Cancer treatment centers should provide brochures about sexual side effects of treatments and provide suggestions for dealing with these issues. It would also be helpful if cancer treatment centers provided a resource list of sexuality professionals (e.g., sex therapists, sex-positive medical professionals, physical therapists) who can provide the necessary services in addressing the sexual side effects.

Sexual health is a very important part of overall health. A comprehensive treatment program for cancer patients and survivors should focus on all aspects of their quality of life, including sexual health.