Sex After Cancer: The Topic No One Wants to Talk About

I was clueless when I was diagnosed with breast cancer. The fear of the unknown was overwhelming. I had so many questions but didn’t have any answers. I did however find a group of breast cancer survivors through Facebook and quickly joined.

The post pinned at the top of the group’s page said that all questions were accepted, and the administrator of the group posted that no topic was off limits and that all posts would be kept confidential.

As someone who had many questions with very little answers, I quickly decided to join the group.

I perused the page for several months and quickly became “virtual friends” with some of the women. The ladies in the group became a wonderful resource. They were gracious and kind when I’d ask a question.

But one topic seemed off limits and it was one I really wanted to discuss — sex. At first, I was afraid to bring it up. Although I assumed that I wouldn’t be openly judged, it felt odd to discuss such a sensitive topic with complete strangers. But as I’d scroll through daily posts, I found I wasn’t the only one interested in post-cancer intimacy. There seemed to be others who needed answers.

Everything I’d read indicated people didn’t openly talk about their sex lives, at least those with severe health issues didn’t. But I found, after cancer treatment, many would admit, the physical relationship with their spouse had changed. What once had been a spontaneous and natural relationship had become uncomfortable and difficult. And, many who’d admitted their struggles chose to deal with it alone instead of trying to find help because they were embarrassed to do so.

I was thankful when the topic of sex gained popularity in the Facebook group. The administrator posted questions and wanted the members to share their thoughts. According to the responses, the reasons many were struggling in their sexual relationships was due to physical pain. The second opinion in the poll indicated emotional distress to be a huge factor. Some women posted comments regarding mastectomy. They indicated losing one or both breasts greatly affected their self-esteem and negatively impacted their desire for sexual intimacy. I was surprised at their candor.

What I discovered, through the online poll, was that some women found talking about post-cancer sex easy, but for others, including myself, it was a challenge. And I wondered why that was the case.

I’d always been raised to believe sex was supposed to be a wonderful part of marriage. It was designed to bring fulfillment to both members of a relationship. While I understood health challenges could certainly affect that area of a person’s life, I wondered why those who’d faced cancer-related intimacy issues didn’t want to share.

When the editors of CURE® recently suggested some relevant topics for VOICES contributor submissions, I looked through the short list. I’m always looking for something new and interesting to write about. One topic on that list grabbed my attention but frightened me at the same time — sex.

At first, I didn’t want to write about sex. But the more I thought about it, the more I felt like I needed to do it. From day one, I have always tried to be open and honest about my breast cancer journey. And, I have always felt it was important to share all aspects of my journey in hopes that something I share might help others. So, I pulled up my big girl panties and made the commitment. I would broach the subject as best I could.

It was many months after my treatment ended before my husband and I decided to become intimate. I’d felt self-conscious and wanted to wait. My husband was patient and understanding but when the time felt right, we decided to try.

That evening, we scheduled a time where we could relax and enjoy being together without distractions or interruptions. Neither of us had expectations. We were in uncharted territory. What we did know was we loved each other and wanted to be together.

Since losing my breasts, I hadn’t felt very feminine, so I decided to put on some lingerie in hopes of hiding my chest.

The evening began with gentle caresses and tender touches. As we shared our love, I noticed areas of sensitivity and discomfort. Whenever a touch was uncomfortable, I’d whisper in my husband’s ear and he’d focus on another area.

As we continued to reconnect, I realized I’d lost all feeling in my chest. The nerves had been severed during surgery and my torso was completely numb. I realized, what once had been a source of pleasure was no longer.

To protect our privacy, I won’t share the remainder of the details from that evening but suffice to say, we quickly learned to change and adapt to many of the challenges breast cancer brought our way.

I did some digging as I wanted to learn more about post-cancer intimacy and the issues many men and women face. I found there are many books on the subject.

A consensus, included in the information that I read, indicated that feeling anxious or uncomfortable toward sex after surgery or treatment was completely normal, especially for those who hadn’t been intimate in some time. I was glad to learn that! Continuing to read, I gathered valuable information which included important things to remember like:

1. Don’t attempt a physical relationship until you are ready;
2. Talk to your mate about your feelings;
3. Be willing to adapt and try new things, and
4. Consult a sex therapist if necessary.

According to breastcancer.org, “The most uncomfortable stuff to talk about is probably your sex life and the changes that have taken place with your illness. You may not know what needs fixing or how to fix it, but you know things are different.”

Many women report having less sex than before their illness, for several reasons:

• The breast cancer experience slows down your body. It takes longer to do lots of things, including getting interested in, as well as starting and finishing, sexual intercourse.
• Sex may be uncomfortable or even painful if you've been thrown into sudden-onset menopause. No surprise that you tend to have less sex, for now. Many women may have had little or no sex from the time of diagnosis through treatment.

Most people have wild ideas about what goes on in other people's bedrooms. Give yourself a break: The carefully researched book Sex in America (by Michael, Gagnon, Laumann, and Kolata) tells us that Americans have a lot less sex than the movies, television, and the guys in the locker room would have you believe. The averages reported in that book are:

1. seven times a month between ages 30 and 40;
2. six times a month between ages 40 and 50, and
3. five times a month between ages 50 and 60.

For people over 60, the numbers continue to decline. But although you may assume that no one in their 70s and 80s has a sex life, that's just not so, the authors wrote.

Whew! It helped a lot to understand everyone’s sex life is very different and there’s no gold standard for what should or shouldn’t happen, especially post cancer. And, experts agreed, even if sexual activity has decreased or even stopped, it was OK. There were still ways to maintain closeness with a partner. Sex did not need to be the focus. Some survivors found contentment in holding hands, cuddling, hugging, and kissing.

My husband and I discovered, as we took the pressure off our relationship, by removing the sex equation, we had freedom to reconnect in ways we never imagined. It has taken time and it hasn’t always been easy, but we’ve managed to rekindle that precious part of our lives.

Discussing the topic of post-cancer sex can be challenging, but there are many good resources available. Some of the ones we found most helpful include:

Breast Cancer Husband: How to Help Your Wife (And Yourself) During Diagnosis, Treatment, and Beyond

Sex and Cancer: Intimacy, Romance, and Love after Diagnosis and Treatment

Sex and Cancer: Six Weeks to Better Sex for Couples During and after Cancer Treatment

The Breast Cancer Survival Manual, Sixth Edition: A Step-by-Step Guide for Women with Newly Diagnosed Breast Cancer

Dr. Susan Love's Breast Book