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Breast Cancer’s Impact On Sexuality, a Research Opportunity

As many of us know all too well, a cancer diagnosis affects a person’s life in just about every conceivable area, including your sex life. Any kind of cancer does this, of course, but breast cancer adds another whole dimension to this conversation for obvious reasons. After all, sex and breasts, is it even possible to have a conversation about one without the other? Maybe. Maybe not. There are so many side effects from treatment to contend with, many directly impacting your sex life. Are you nodding your head yet?

I support research of many sorts, so when I was asked to share about a research project dealing with cancer’s impact on sexuality, I said yes. This particular research study is for women ages 21-40 at the time of diagnosis. You also need to be less than five years out from your diagnosis.

Originally this study was going to be stage limited, not including stage IV individuals. Had this been the case, I would have said no. I am happy to report the leaders of the study changed the stage requirement and I applaud them for doing so because as we all know, stage 4 patients are left out in the cold way too often.

So, about the study…

The study is called, “Sex, Spirituality and Breast Cancer,” and is being led by Dr. Cheryl Fisher, NCC, LCPC (a licensed clinical professional counselor) and has been approved by the Institutional Review Board of Loyola University Maryland. Results will be presented at the 2016 American Counseling Association’s annual conference in Montreal, Canada. This study has also been submitted to the Annual Oncology Nurse Specialist Conference to be held in San Antonio (I’m not sure when this is). “The intent of this study is to better prepare clinicians to better prepare survivors.”

Here’s what the flyer says:

My research team would like to talk with you and your spouse about how breast cancer has influenced sexual expression in your marriage. Research indicates that doctors, nurses and therapists aren’t addressing the vital questions and concerns about changes in sexual expression that result from breast cancer treatment. We want to change this… and need your help.

So if you might be interested in participating in this study, download the flyer info and give it further consideration. If you don’t qualify, you can pass this information along to someone who might. Heaven knows this issue needs more discussion.

Here’s a flyer link: Loyola SEX Flyer#2-PRINT

For more info, you can email Dr. Fisher privately. Her email address is in the flyer info. You can also ask questions with a comment below and Dr. Fisher will try to answer them.

Do you like to participate in research studies?

Why or why not?

Has your breast cancer diagnosis impacted your sex life negatively and have your issues been addressed, or even discussed with any professional?

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22 thoughts on “Breast Cancer’s Impact On Sexuality, a Research Opportunity

  1. It has affected every part of my life, especially my sex life. First I lost all of the sexual drive, then my partner lost all desire for vliseness. It probably had a lot to do with my loss of sex dive, but not entirety. My physical appearance had a lot to do with it too. You might ask, why did I not have reconstruction. Because I had just had many major surgeries, and did not want to go through that again. I had many complications. Why would I want to put my life on the line again? I didn’t. Complications included coma state for more than a week st a time, and that is very frightening. The fallacy that patients cannot hear what is being said about them by health care professionals is false. I HEARD MANY THINGS THAT WERE VERY FRIGHTENING, LIKE “SHE’S NOT GOING YO MAKE IT. NEVER ASSUME THAT patients CANNOT HEAR OR UNDERSTAND. That is the most frightening part of my cons experience, I knew everything that was going on, including the respirator being shoved down my throat. The conversation went from bad to worse. It was grim. I had no hope, they took that away from me. It is very frightening that your recovery chances went down 90%, when you chose your doctor unknowingly. There wasn’t much information given me about the surgeon doing operation, and I ended up in a coma for over 6 days. The powerlessness of hearing the respirator alarm go off and knowing your life is in the hands of a nurse who doesn’t move very fast is frightening. Then knowing the nurse has lost patients too, doesn’t help either. That is why I didn’t elect to undergo reconstruction, I didn’t want to the chances with a nestles is again. Can you blame me? I don’t think so.

    1. Frances, It’s totally understandable why you opted out of reconstruction. I’m sorry to hear about all your difficulties. I hope you’ll consider participating in this study. Thank you for sharing.

  2. Nancy, this topic is very close to home, sadly. My doctors never communicated to me that there was a possibility my sex life would be affected by my breast cancer and its treatments. In fact, I thought I was going to go back to normal once treatments were done (sounds familiar?). It’s bad. And it sucks! Truth is I avoid my breasts and Tamoxifen isn’t helping!! My guy has been affected by my cancer too, of course. Without going into too much details, “the day I was dx with bc was the day I became a porcelain doll.” We’ve tried to seek help but gave up doing so because the drive isn’t there. We are both traumatized in a way. We are aware this is very important and it needs attention. (By the way, it is hard to find insurance companies who cover couple therapy, which can be expensive.)

    I like to participate in research studies because it is my nature to help others — I am a candidate for this one. I’ve been recently asked to be interviewed on this topic so I already have a lot of information I can share.

    Thank you for all you do, Nancy.

    P.S. I love Montreal! I was there recently and wouldn’t mind having an excuse to go back.

    1. It’s great that they decided to include Stage IV, but how about including a more realistic age group???? I’m 55 and until this crap hit the fan, my husband and I had a great sex life. Now, three years after the mastectomy? I can count on one hand how many times we’ve had sex since Jan. 1.

      No one ever talked to me about “that” side effect of any of this. My breast surgeon touched on it a little bit: because of loss of nerves in my left breast I could forget about any sexual arousal from it being touched. That was it. End of discussion. (This was during our initial consultation, so I was numb and not my usual prepared self for an onslaught of questions that I wanted to ask. Too much info at once = my brain can’t process every detail.)

      Tamoxifen and Arimidex are certainly no help either. Plus the effects of the menopause that resulted from all this. They really need to have a licensed professional on each patient’s medical team. I had a breast surgeon, plastic surgeon, cardiologist, physical therapist, primary care, and of course, oncologist. What’s one more? (They also need to add nutritionist to the list, but that’s a whole other topic.)

      1. Mary Ann, I agree about the age thing, however, this particular study is very focused. Every study has to have parameters, but I would love to see studies for us ‘older’ gals too, because heaven knows, this is a big issue for many of us. I like your idea about adding that additional professional to each patient’s medical team. I agree with you. There’s a need. Thank you for sharing.

      2. I echo the age inclusion. I’m happy to be alive at 53 and 6 months out of treatment. Happy with reconstruction but have no sexual desire due to Aromasin and post menopausal. Have plenty of joint pain, fatigue and hot flashes. I miss intimacy with my guy who tries but wow just no twinge of desire.

    2. Rebecca, Well it’s close to home for many of us, and not just the ones in this study’s age bracket of course. This is a huge issue that sadly, goes under-discussed, too, for a lot of reasons. I’m not surprised you like to participate in research studies as I can tell you like helping others. Thank you for sharing and for thinking about participating in this study. And thank you for the kind words too.

  3. I would totally participate if only I were within the parameters. Pretty much every-single-part of our, not just my, but also my husband’s, life has been affected. And the sex life, for sure!! I do wish there were more discussion at the beginning of treatment about this topic. xx

    1. Kimberly, I know, right? The other day I was trying to think of some area of my life not affected by cancer and I didn’t come up with much. And about the study, if I understand things correctly (and I might not), I think you can be older than 40 now as long as you were in that age bracket at the time of your diagnosis. But don’t quote me on that. So if you’re interested, email Dr. Fisher.

      1. Nancy
        Yes, that is correct!
        We are really in need of ALL feedback regarding the experiences of sexual expression and intimacy and breast cancer. We truly welcome anyone who would like to contribute!
        Thanks for all you do… and posting this study!
        Cheryl

    2. Kimberly
      Thank you for sharing your experiences!
      There is so much about this area of wellness that clinicians have omitted in care! While you may not fit the parameters, I think your input would be valuable…if you are interested please feel free to email me at cry.fisher@verizon.net
      Cheryl

  4. I admire your zeal to tackle all types of subjects. Sexuality issues often get swept under the table, or under the bed as the case may be. It’s time we addressed the concerns that go deep beneath the surface. I am divorced, but there is no denying that my having no breasts and a low libido from breast cancer treatment had a really negative effect on my self-esteem. I hope more people will seek and get the therapy they need to cope better. Thank you for your candid post. xxx

    1. Jan, Sexuality definitely too often gets swept under the table. Or bed as you said. I am happy to help encourage more dialogue about this important topic whenever I can. I could share a whole lot more on the subject than I have, but… it’s a delicate topic for many reasons. I’m sorry cancer took such a heavy toll on your marriage. Thank you for sharing. Always wonderful to hear from you, Jan.

    2. Jan
      Thank you for sharing your experiences!
      We feel that we are sexual/sensual beings and current research appears to indicate that this is an area of care neglected by doctors, nurses and Counselors ! We really want to better inform the practitioners so that they/we can better support survivors and co-survivors!
      I genuinely welcome your feedback if you are interested in contributing!
      Feel free to email me cy.fisher@verizon.net.
      Cheryl

  5. Well, it’s too bad they only want to talk to married people, because I could give them an earful. Rather narrow-minded of them, I must say. Don’t they think single women have sex lives, particularly after a certain age? Sheesh.

    1. Kathy, No, they aren’t narrow-minded at all. All studies have to be highly specific. There is most definitely a need for studies specific to single women, older women, lesbian women – all women impacted by breast cancer. This is just one study. Thank you for reading and commenting. I understand your frustration. Believe me.

      1. Nancy
        Thank you for clarifying that this study wants to capture ALL experiences…we just had to begin with a specific criterion. We now have some preliminary data and are open to anyone who would like to contribute!
        I really appreciate the candor I am reading in the posts! I genuinely feel these stories need to be told to transform the lack of support currently offered!
        Cheryl

    2. Kathy
      Oh dear! We are certainly interested in all feedback! The type of data analysis we use can only work with one demographic at a time …so we began gathering data from only married couples. However, we are now able to expand our collection to all persons who would like to contribute:)
      So… I am all ears!!!! cy.fisher@berizon.net
      Cheryl

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