Sex, Cancer, and the Things We Don’t Say

Okay, this is it. I’m talking about sex again. It was ages ago that I spilled the beans on contracting vaginas, so now I’m back to give you a refresher and talk about an important project. Essentially, AnneMarie over at Chemo Brain Fog is once again going into lightly treaded territory and has decided to take on sexuality. I know—you know—we know this is a hot topic with the lid on tight. Beneath that cover there is serious bubbling happening.

sex talk

I can see the discussion on the rise. There are articles in Huffpost once in a while, bloggers have pulled back the curtain occasionally, and Facing Cancer Together has got stuff in the mix too. So there is a bubbling. Geez, even Dr. Canada once mentioned the usefulness in cuddling. That is all good stuff. Let’s get that pot exploding with conversation.

I admire AnneMarie for tackling this conversation with a large-scale project. Her book idea isn’t just about sharing one experience, it’s about collecting many. So this post has two things: 1) A little bit from me, since that feels fair, and 2) A little bit from her too with more to come on her own blog, later. After reading this, hopefully you move on to 3) A little bit from yourself as you anonymously fill out the survey. There’s one for you and, if they are open, one for your partner too.

(Chances are if you’ve read this far but never had cancer, you’re thinking ‘time to click outta here’ but hey, we are talking sex and that’s engaging. Plus, stress around intimacy can impact you whether or not you have had cancer. Okay, I’m being cancer specific – but it would be so naive to imagine other women and men don’t struggle with their bodies as life happens and things change. So while the survey is for women who have had cancer and their partners, this post is also for you. Thanks for being with us.)

Now for a little bit from me (but only the really embarrassing stuff).

You might know my story of intimacy during and after chemotherapy. Sex drive evaporated, lady parts tightened to the point of impossibility. Or at least, so I thought. After a load of work, and with the return of my estrogen, things improved loads. However, my lower area was never 100% healed. (Mind you, I was the only one who noticed. Zsolt had no complaints!)


A distraction for those who want to skip the ‘details’. Look here! Then go down a couple paragraphs.

BUT then I was diagnosed stage four. The depression itself was a buzz kill, and then I went on Zolodex. This is a drug that essentially stops ovulation. The lack of lady hormones has again broken my vagina. It takes a lot of work for me to feel anything except pain down there. Thankfully I’ve learned to power through the experience (This is S&M in action, people. 50 shades of ‘fuck off cancer’) so that it can also incorporate pleasure, but  sex will never be easy again. Thank God for whipped body butter!

Zsolt and I talk about this, I cry as required, and we then have very intimate experiences together. But it’s hard and I often have a sense of dread toward what was once so awesome.

That is my story and those are my issues. For others it is surgery, chemotherapy, lack of bodily control, cramps from sliced muscles, exhaustion, missing body parts, etc. The point is, this is just my story. Many of you have your own stories. Now, here is a little of AnneMarie’s. I put on my ‘blogger’ hat and interviewed her.  Before we go further, if you want, you can fill her survey right here.  The survey is anonymous.

Now here we go, AnneMarie and her project! WOOOHOO for you AnneMarie!

Catherine (i.e. me, asking her, AnneMarie): Why do you want to write a book about sex and cancer? And how do you know other women/men are struggling with this as well?

The Amazing AnneMarie.

AnneMarie: First, I wanted to see if there was any interest, would others be willing to share their stories.  I attended a support group about body image issues many months ago and the conversation immediately turned to sex.  It was all women and we ranged in age from early 20’s up to age 70.  The room was packed; the conversation was lively and eye-opening.  I realized others are struggling with so many aspects of their sexuality.

It seems the topic is barely discussed.  I don’t want to write a self-help book based solely upon my own experiences.   Compiling stories from many different women is what I believe will make the book helpful to the widest audience.  Women who are single and dating obviously have different concerns than women who married or in committed relationships.

Catherine: Who are you working with for the book (there’s a doctor, right?)

AnneMarie: I’m working with a medical oncologist whose practice includes addressing sexual issues.  The doctor has chosen to remain in the background for now since the collection of the stories and having a true picture of what patients are feeling is crucial.  Interestingly, when the first narratives where shared, I discussed some of what I was reading with the doctor.  Some of the issues being shared were things that were never brought up by patients during their visits with the doctor.  Knowing that made me more determined.  This book may provide insight to our doctors and help them to ask the questions we may be too embarrassed to mention.  The doctors aren’t mind readers.  If we aren’t telling them everything, how can they even attempt to offer us solutions.

 Catherine: Can you share what’s in this survey, and why it matters?

AnneMarie: The survey is short.  All questions are optional.  I ask for age, relationship status, type(s) of surgery, ongoing treatment with tamoxifen or any other “maintenance” medications, disease stage, geographical location.  Those responses help put the remainder of the information into perspective.  For example, if someone lives in a very rural area, I would expect they may not have access to a large number of doctors so they may not have an opportunity to speak to a doctor who is well versed in issues surrounding intimacy or sex.  The most important part of the survey is a personal narrative.  I didn’t want to ask specific questions about sex.  I hope people will share their fears, their feelings or even specific stories that may be helpful for others to hear.

Catherine: There’s a survey specifically for caregivers. What are you hoping to learn from them?

AnneMarie: I am seeking information from caregivers or partners of patients because I think some of our hang-ups are insignificant to our partners.  What I mean is that we may be overwhelmed at the thought of someone seeing our altered bodies and for our partners, they aren’t looking at the scars.  I hope hearing from some of them may help us past our insecurities.  Hearing from partners is a means of breaking down a communication barrier that may exist in many relationships.

Catherine: Is there any personal story you’d feel comfortable sharing around this area?

AnneMarie: I am very insecure about my appearance since my breasts were removed.  Clothed, I’m fine.  I still change with my back to my husband.  My surgery was never an issue to him.  He did everything to assure me I was more than my breasts.

Many months ago, we had serious marital issues that resulted in a separation.  Shortly after the separation, I had to undergo a complete hysterectomy.  The combination of losing all of the rest of my female parts and being separated was one of the lowest points of my life.  This is not something I’ve ever really discussed on my own blog.  We are trying to work things out but it’s been difficult.  The thought of dating and possibly becoming intimate with a man terrified me.  How would I tell a potential partner that I have missing body parts?  Would I expose my chest to anyone or would I insist on remaining partially clothed?  Is there appropriate lingerie?

Having been married for so many years and then, being thrust into the world of dating, it was easier to avoid all of it.  The fact that I was in that situation and instead, just spent time with my female friends, made me realize I sex was becoming an insurmountable problem.  I have an excellent therapist and we discussed this issue so many times.  Intellectually, I know it wouldn’t matter with the right person, but I never got past that fear.  My marriage is still very much in the earliest stages of repair so this is an issue that I may have to face one day and frankly, it terrifies me.


Interview over, Thanks AnneMarie!

Now it’s your turn: If you’ve read this far, I reckon you care. So, share your experiences and let’s help one another. Again, you can find the survey, “Share Those Moments” here,  and if you are a partner, you can go over here to fill out your version.

It’s emotional, but it’s also so good to let these things go. There are way more stories that I’ve heard from others that could be shared here, but wouldn’t it be better to tell your story for  yourself?

Good luck. And thank you.


18 thoughts on “Sex, Cancer, and the Things We Don’t Say

  1. Catherine, thanks so much for bringing this whole issue to life — the proverbial elephant in the room. And I feel like an elephant, too, not because of weight but because body parts are missing and I feel out of place in a world that puts so much emphasis on THOSE particular body parts. Sex needs to be part of the discussion, even, or especially with, stage IV breast cancer patients. We need to be heard, but all we get told is to just keep doing treatment and scans. There’s more to life than treatment, side effects and scans. I’m taking the survey now, hoping this project goes far!! XOX Jan

  2. Hi Catherine, Love you for adding humor to this very serious topic. A little humor always helps take the edge off, right? I think you’re right, this topic is starting to bubble up… heck, maybe I’ll even blog about it – eventually… I’m actually a very private person (I know, I blog about breasts on the internet for crying out loud…) and dear hubby even more so, and then there’s the whole privacy thing and so on and so on. But I will get to Ann Marie’s survey. I can handle that. Kudos to her for taking this on. Kudos to you for this post and all your other ones on this ‘hot’ topic. Here, too, there’s strength in numbers, right? Or at least less fear in numbers, or something like that… Great post. Thank you.

    • Hi Nancy,

      I get that aspect of privacy. It’s important to protect certain things, particuarly when they involve others. I’m glad you’re off to do the survey. At least it can be private, even if the lessons will be used to help others.

  3. Hey, I don’t know if you ever tried this product but it made a big difference just moisturizing my vagina. My gyno, who once worked at Sloan, introduced me to it. I love it.

  4. Pingback: Costs of Cancer Treatment: the elephant in the examining room : Mourning Has Broken

  5. dear Catherine,

    loved the interview with Annemarie. and I thank you both so much for your passion to bring this highly charged but little talked about issue of sex to the forefront (and Annemarie’s survey). I did the survey and can’t wait to hear when the book comes out. I think it will be of such value and hope it brings about important conversations to change the landscape of sexual health for cancer patients.

    much love and light,

    Karen xoxo

  6. Pingback: When Cancer Meets Community | The Beauty Mag

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