Sexual intimacy after breast cancer is a very difficult subject to discuss. Since I’m trying to share the good, the bad and the ugly as it relates to my breast cancer journey, I need to share something that many will consider taboo.
I was diagnosed with breast cancer in June of 2014. It hasn’t been two years yet, but I really do miss my breasts. Oops! I wasn’t supposed to say that, was I? But it’s the truth. Even though I wasn’t well endowed, I miss what I did have. My little breasts were mine. They were a part of me. I never dreamed I’d lose them to cancer, but I did.
When I had a bilateral mastectomy on July 9, 2014, I wasn’t thinking about how I’d feel without my breasts. My only concern was getting the cancer out of my body. My doctor never told me I might actually grieve the loss of my two breasts, so I was ill prepared for the wave of grief that washed over me a few weeks later. I remember standing in my bathroom with my surgical drains dangling from my chest. I was wrapped in a beautiful, floral compression bandage. I hadn’t seen the surgeon’s handiwork yet. I was too afraid to look, but I knew I had to do it. I was about to get a shower and thought it would be a good time to take a quick peek. I asked my husband not to come in the bathroom because I didn’t want him to see my reaction. Slowly and carefully, I loosened the compression garment. I didn’t look down right away but kept my eyes fixed on the ceiling. It took everything in me to finally glance down at my chest. When I did look, I couldn’t help but be overcome with grief. My chest was completely flat and I had a long, angry, horizontal scar where my breasts used to be. I was devastated. I did not, in any way, shape or form, feel like a woman.
I grieved for weeks. I had no idea how to get through this process. I had no books to instruct me. I had no friends who’d been through it before. I just had to wing it. At first, it was debilitating, but as the days went by, the grief became less and less. Finally, I was able to accept the fact that I was breast-less. Instead of focusing on the loss of my body parts, I was just thankful to be alive. I thought I was doing pretty well until I had to face another trial.
My husband never mentioned the loss of my breasts. When we went in to discuss options with the surgeon, he was silent. When I went in for surgery, he didn’t say a word. I thought he just accepted the mastectomies as a necessary choice in exchange for my life, but I was very wrong.
Before surgery, we had a healthy sexual relationship. We loved each other well. After surgery, things drastically changed. Weeks would go by and he’d never touch me. I knew, at first, that he was being respectful of my physical limitations. Surgery had caused me to suffer pain and fatigue. I had swelling and those nasty drainage bulbs to deal with and those things weren’t very attractive. After I’d healed from surgery, I did my best to make myself look pretty. I dressed in floral nighties. I put on perfume. I wore expensive makeup. Nothing I did mattered. Months started to go by and there was no interest on his part. I was hurt. I longed for the intimacy we’d shared before my cancer diagnosis. I didn’t understand why he wanted nothing to do with me, but I didn’t push. It never occurred to me that he was grieving the loss of my breasts, too.
One day, I accidentally discovered he’d been looking at internet pornography. He’d never done anything like this before, and it was like pouring salt into a wound. I’d been through so much already. I had cancer. I had surgery. I lost my femininity through no fault of my own and now, he was finding pleasure in photos of other women. I didn’t know how to deal with it, so I did the only thing I could do…I cried. I cried for a couple of days straight.
After I cried, I got angry and I confronted him. He looked shocked that he’d been caught. I made him sit down with me and discuss it. I wasn’t ready to ask the question, but I asked it anyway. I asked him why he did it. At first, he said, “I don’t know.” I told him that wasn’t a valid answer and I needed answers. It was hard to get him to talk about it, but finally he did. He said he missed me. He missed my breasts, too. Just the thought of him longing to see my breasts again hurt me deeply. I couldn’t give that back to him. Being able to understand the reason behind his dabbling in internet pornography helped a little, but the wound was great. I began to wonder how many other men had been affected in this way after their wives had been mutilated by cancer.
I searched the internet trying to find information on this subject. I wanted to make sure I wasn’t the only one going through this sort of thing. On breastcancer.org, I found a post on sex and intimacy. The post was adapted from the book, “Living Beyond Breast Cancer” by Marisa Weiss, M.D. and Ellen Weiss.
The article said, “Many women find that breast cancer diagnosis and treatment seriously disrupt their sexual lives. First there are the most obvious issues—the physical changes, exhaustion, nausea and pain from treatment, self-image, empty energy reserves, and the emotional chaos from the diagnosis itself. But there are also many other issues that women and their partners may not even know they'll have to face. Yet retaining intimacy in your relationship both during and after your breast cancer ordeal is critical to your overall recovery.”
That made a lot of sense, but it didn’t answer my questions about how men dealt with grieving over the loss of their wives’ breasts and whether or not it drove them to seek satisfaction through internet pornography or other means, so I continued to search. The only article I could find was one entitled “Coming to Grips with Breast Cancer: The Spouse’s Experience with His Wife’s First Six Months” by Ellen H. Zahlis, MN, Research Associate and Frances M. Lewis, PhD, Professor.
The article states, “Men reported that breast cancer impacted their relationship with their wives. Some spouses described what they did to cope with the breast cancer, including devising strategies, avoiding their own feelings and avoiding thinking about it and keeping busy. Spouses viewed the breast cancer diagnosis as unexpected, sudden and emotionally overwhelming. They felt helpless to save themselves or their wives from what was happening. Every aspect of their daily lives and function was impacted, including job performance and social times with friends. They struggled to understand why such a thing would happen. For some spouses, the breast cancer was felt to negatively impact their relationship, including challenging their communication as a couple. Not only did the cancer impact their communication, many spouses claimed the cancer negatively affected their physical relationship. Men attributed the changes in their intimate relationship and sex life to: their wife’s changed physical appearance, including her being bald; side effects from her treatment; her surgical scar and tubes; her reticence to show him her scar or breast; her self-consciousness about how she looked; his ambivalence in wanting to see her breast; his own concerns about being physically responsive to her; her lack of sensation in her affected breast; and his awareness that she was sore from the surgery and his fear he would hurt her.”
The more I read, the more I understood. Breast cancer not only devastates a woman’s body, it could also devastate the physical relationship between a husband and wife.
Although I was unable to find information on spouses who turned to internet pornography because of their inability to cope with the physical changes due to breast cancer, I’m sure there are other women who have experienced this in their lives. I am happy to report, after marital counseling coupled with a healthy dose of patience, understanding, and love, our marriage is on the mend. My husband no longer looks at internet pornography and our physical relationship has been renewed.
It’s important for women to realize that breast cancer affects their spouses or significant others, too. Often, men may feel it is inappropriate to discuss their feelings of loss. They may not know how to work through their own grief and may try to find other ways to meet their needs. It is my hope that this blog post will provide helpful information and shed light on a topic not often discussed. Breast cancer presents many challenges and some of those are seldom shared. By understanding all aspects, the emotional, physical and spiritual, perhaps we can find ways to equip those newly diagnosed with tools to traverse their journey more easily.
I had a mastectomy just over a month ago. Even though my husband told me before my surgery that he loved me for what was inside, not what was on the outside, i.e., my breasts, I couldn't help but wonder how he'd truly be affected. He and I both looked at my surgery site together when we took the bandage off for the first time, and we were clearly both taken aback, even though we'd known what to expect. For the first week or so after surgery, I slept in another bedroom where I could be more comfortable with pillows for support. When I finally felt well enough to return to our bed, I was so self-conscious; I'd alway slept in the nude, and being naked around my husband was so natural. Now, however, I was dressing in the bathroom, and wearing pajamas to bed every night. 4 weeks went by and he seemed totally disinterested in sex, and I was of course taking it personally, so I finally initiated it the other night, and it was different with my breast gone (I'm sure we were both conscious of the fact that it was gone), but it was so necessary for me to know that I was still desirable. I'm hopeful that we will be back on track very soon...I told him the next day how important that had been to me...that although I believed him when he said the loss of my breast didn't change who I was, I needed him to show me that it was okay.
Peterson4082, I am sorry somehow I missed your post. I am thankful you were brave enough to take the initiative with your husband. It's hard to learn to reinvent intimacy with your spouse but it can be done. I'm still finding challenges in this area of my life but we are working through it.
Bonnie, your blog was what I needed to read! I've searched as well on the topic of men & internet porn during a wife's breast cancer & came up empty handed. My husband of 23 years NEVER took an interest in such things nor did he ever think of looking, he even said it was disgusting!! he was my "perfect man" until that dreaded day I found out he was looking at nudes on his phone. My bilateral was June 2015, reconstruction October & found out about his betrayal Dec 20. Talk about hitting a girl when she's down!!! His looking took place a little over a months time, thank God it wasn't longer because I am having a difficult enough time as it is. He also states he doesn't know why he looked but was a way to not deal w/the stress. I can understand that but the pain is excruciating & on my mind daily. I'm having a hard time forgiving him, I check his phone daily also. He's been extremely remorseful & hates himself for causing me such pain. How did you get to the forgiveness stage or have you yet? We've discussed this with no one but a priest, my family & his have no idea what's happened. If they did they would hate him! I don't know how to let go of the pain & disappointment. I was completely let down by the only man I've ever trusted in my life. FYI I'm 45, married 23 years w/2 kids. I do love him with all my heart so really want to move forward & put this nightmare behind us. Any advice you could give is so greatly appreciated! Some days I do great & others I could just cry all day. Thank you!
Bonnie, Thank you so much for posting this. You are a brave and compassionate person. Kudos to you for TALKING to your husband about this. I hope you and he can work through it and regain a healthy sex life.
I've been searching for information like this, because my partner or 13 years has just found out she has a genetic mutation that, combined with the fact she has a primary relative that has had breast cancer, means she is at a very high risk. She has made the decision that she wants a preventative double mastectomy. I support her decision 100%. At the same time, I'm terrified. I'm scared of the surgery and recovery she will have to go through. I'm also scared about how it will impact my physical desire for her. I want her to consider reconstruction, and from what I've read she is a good candidate for skin-sparing or even nipple-scaring surgery. I want her to remain as much as possible exactly the way she is now. I realize that recovery is going to be longer, and there may also be increased risk (that's difficult to get information on), so I don't feel like I have the right to ask her to do it. When I tried to talk to her about it, she was hurt and angry, so now I'm left alone.
I need someone I can talk to about this.
I know she is the one who is going to have to go through this, and my role is to support her as much as possible, I know that, and I care very much about her. That doesn't mean this isn't something that's important to think about and to talk about. So if anyone feels inclined to post something about how all I care about is sex and I'm being selfish, blah, blah (as has happened when I posted about this on another forum) then they can stick it where the sun don't shine.