Let’s Talk About Sex After Cancer

Published on: 02/23/15

There are more than 14.4 million cancer survivors in the United States today, and that number increases every day. More and more people are surviving their disease. Though those numbers are encouraging, millions of those survivors are living with sexual dysfunction, caused by their cancer or its treatment, impacting their quality of life.

According the National Cancer Institute, estimates of sexual dysfunction from various cancer treatments range from 40-100 percent. Most of the information relates to women who have breast or gynecologic cancer and men who have prostate cancer.

The physical location of the cancer can profoundly impact how a person sees themselves as sexual beings, it can affect their self-image, alter their body-image, and increase difficulty regarding sex after cancer. Breast and gynecologic cancers in women affect a part of the body that represents femininity, and prostate cancer can affect a male’s perception of his masculinity. Other cancers, and the side effects from treating those cancers, can affect all aspects of quality of life, including physical, emotional, and relational.

Some of the common issues include painful intercourse for women, erectile dysfunction in men, loss of libido, low energy, and fatigue. In addition, both sexes can face an altered body image and concerns regarding how to communicate about these changes to a spouse or partner.

The number of survivors challenged with these very sensitive and personal issues are staggering, and yet, there is often little conversation about this in the medical setting.

How can this be?   The studies are out there, the statistics are overwhelming, and the patient’s quality of life is impacted negatively.

Why is talking about sex so taboo in our society?

We are inundated with sexual images in our everyday lives, from what we watch on TV and at the movies, what we read on billboards, in best-selling novels, and magazines, and what we wear as appropriate attire in both professional and personal settings. As a society, we are comfortable with all these forms of sexual expression, including telling jokes on the topic, but we don’t often have meaningful conversations about it.

When was the last meaningful conversation you had about sex? Who was it with? Chances are it wasn’t your partner and it wasn’t your medical provider.

Introduction to After Cancer 

I learned firsthand the complications of sexual dysfunction caused from chemotherapy and radiation when I was diagnosed with anal cancer in 2008. The fear and confusion that accompanies the diagnosis was like nothing I’ve ever known. Battling my cancer and fighting for my life became my only focus. My treatment included chemotherapy and five weeks of radiation. Though sexual dysfunction was listed as a side effect of the treatment, I was told on three separate occasions it wouldn’t be an issue, because I was young, healthy, sexually active, and wasn’t having internal radiation therapy. This information was given at the beginning of active when sexual health was low on my list of concerns. But soon after my treatment ended and was given a positive prognosis, my thoughts moved to more ordinary life issues and returning to normal activity. In preparation, I was told to let my body heal for six weeks before having intercourse, and in six weeks, to use lubricant and go slow at first.

We approached our first attempt at sex after cancer with apprehension and optimism. But my body clearly wasn’t ready. Upon penetration, the pain was severe. I assumed my body needed more time. The more we tried, the more frustrated and defeated we both felt. I dreaded every attempt, and couldn’t imagine how intercourse could ever be comfortable again. My husband also lost hope and eventually explained he was unable to feel aroused knowing the pain caused me. It was impossible to hide my body’s reaction to the immediate pain.

On my next follow up visit I reported this information, and was referred to my gynecologist. After examining me, put me on a vaginal estrogen suppository, sent me home with dilation tools and estrogen cream for vaginal stretching, and eventually performed minor surgery to remove the scar tissue that webbed throughout my vagina. Within six months, I also began rehabilitation therapy to work on the inside muscles of the vagina and had a custom dilator made to assist in keeping the scar tissue from building up. In addition, I was given an anti-anxiety medicine to help me relax ahead of any love making. But none of it worked to calm the pain, and the pain made intercourse impossible.

I was surprised by the extent of the sexual dysfunction and equally surprised and disappointed that there was no warning or expectation of it. It affected me physically and emotionally, and added new challenges to my relationship with my husband. I had little to no interest in sex, but was in a committed relationship, and didn’t know how to reconcile those two facts. I wondered how I compared to other patients having chemotherapy and radiation. Which treatment had changed my body so much that intercourse was impossible? I figured my sexual dysfunction must be an exception to the rule. I remembered being told I would have no issues regarding my sexual function. How could they have gotten it so wrong? Maybe because it isn’t talked about…

Bridging the Communication Gap

There are several reasons for the communication gap that exists with medical professionals and patients following a diagnosis of cancer. The economics of medicine make it difficult for medical professionals to find extra time in their day to add another item to the list of necessary topics to be discussed. Also, there is little formal training in the healthcare setting given on sexual health topics, especially sex after cancer.  Without consistent practice behaviors in place, this topic will be easy to ignore. Like everyone else, medical professionals also have the same apprehension in initiating conversations on this sensitive and often awkward topic.

For patients, our focus is on beating the cancer, and we don’t often realize until long after treatment there is a sexual health issue as a result of the cancer treatment. Patients will need a safe and supportive environment to initiate a sexual health conversation with a member of their medical team, an environment free of judgment and interruption. We have a ways to go to bridge this gap, but when we are able to screen for patient issues of sexual health, we can find the resources to resolve those issues, and positively impact the quality of life of those survivors.

What question do you have about your sexual health after cancer?

You’ll find great resources and information at my website. While you’re there, sign up for the community of survivors with the same issues that we’ve discussed today. I provide advice, resources, and tips on sexual health and sexual dysfunction on topics as we’ve discussed today to your email inbox.