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Sex and the Cancer Patient

July 1st, 2010

Maybe it’s because I had breast cancer. Maybe it’s because my brother, at age 35, had prostate cancer and was treated with Lupron, a drug that shut down all of his male hormones.

I thought it was obvious that cancer patients have to contend with a serious crimp in their sex lives, during and after treatment. But if it’s a subject that is even taboo in France, you know we still have a long way to go toward talking about sex and cancer.

This is a post about sex and treatment. Not about relationships, not about intimacy. I hope that it helps others out there find some resources to help them with this vital issue.

When I was first in chemo, I tried to find information on the subject. It was hard to come by. I started talking to other patients and survivors whom I met through social networks. I culled the few articles I could find and went into a few chatrooms on the topic. I spoke with my oncologist. This post summarizes what I have learned as I sought information on this important and under-discussed topic.

Cancer threatens our identities in many ways. Treatment often alters our physical appearance. We are confronted with our mortality. For many people, sexuality equals vitality. To be robbed of our hair and our body parts is hard enough. But to be granted early menopause or be rendered impotent hurts in a different way.

From my conversations and reading, patients’ libidos are affected differently –– and for different durations –– depending on the kind of cancer they have and how it is treated.

Some cancer treatments shut down sexual organs and functioning for the long term. Women with cervical cancer, for instance, might have several inches of their cervix removed as a part of treatment. Sometimes, radiation in the cervix can leave adhesions that close the vaginal walls, making intercourse painful or impossible. Men with prostate cancer risk permanent erectile dysfunction in the wake of a prostatectomy. These are serious side effects and require special physical therapy or medications. Cure magazine wrote the best article I have found on the subject, although talking to patients, I find that there is still a lot that is left out.

Other cancers effect secondary sexual organs, such as breasts or testicles, leaving patients with altered body images and transformed (or deleted) erogenous zones. The basic sex act is still possible, but patients’ desires may need to be adapted to their altered pleasure zones. While there are sometimes cosmetic fixes for these lost or changed organs, they are often imperfect, leaving people with little tono sensation.

For example, women with breast cancer are sometimes faced with a choice about having single or double mastectomies. Deciding whether to remove a second, unaffected breast forces women to balance cosmetic, medical, and sexual considerations. The latter is often not discussed with women making this choice. Interestingly, I have not met any men with testicular cancer who have considered prophylactic removal of their second testicle. Maybe I have just talked to the wrong men.

Having body parts removed or altered leads to body image concerns for both men and women. The sex therapist advice I have gathered focuses on getting comfortable with new bodies in the bedroom and refocusing sexual expectations. Some patients seem to recover sexual functioning better than others.

The third group of cancer patients do not necessarily have their sexual organs (or secondary sexual organs) directly affected by treatment. Nonetheless, the physical and emotional toll of surgeries, tumors, radiation fatigue, and chemotherapy can dampen libidos, even if only temporarily.

Interestingly, some people find that they have a surge in their libidos either immediately after diagnosis or once their mojo comes back. Facing mortality can do that to a person.

What have been the most helpful resources you have found on the topic of sex and cancer? Did your doctor discuss this with you during your treatment?

This entry was posted on Thursday, July 1st, 2010 at 7:16 pm and is filed under Treatment, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

15 Responses to “Sex and the Cancer Patient”

  1. July 2, 2010 at 10:53 am

    I’m shocked that no one has responded because these issues do not just plague a few random women?

    So… I’m taking a moment to respond, although my situation is slightly different. BRCA1 positive, preventative mastectomy was in February this year (with tissue expanders), next phase DIEP reconstruction is end of this month. I technically have not had the side effect or sexual complications of actual cancer treatments like chemo or radiation, but have dealt with the issue of body image.

    Post-surgery, for the first time in my life, I found myself to be very sexually insecure. And I do really mean, for the first time in my life, as my world previously has had no sexual boundaries. Not in any kind of committed relationship, I did not have the spousal support or a partner in crime to help me through (although sometimes that does not go well in talking to other women whose marriages or relationships could not stand the test of cancer).

    I never really got any true “sexual” counseling… but I do believe that in the grand scheme of things this is an area where cancer counseling falls extremely short. The only thing my doctor ever talked about prior to surgery, was asking me how important my breasts were to me sexually. We talked for all of five minutes, end of topic, never was readdressed or discussed again really. 5 minutes of conversation to hack off a sexually significant part of my body for the next 50 years? Doesn’t seem like enough?

    BUT… I am very thankful for the encounters with a few different people who have helped me thru my image issues over the course of the past couple months between surgeries. I’ve met two different wonderful men, who knew about my mastectomy, knew what I had gone thru, scars and all, and still loved my body as if it were completely whole. And it has been an exploration in sensation as I’ve got almost no feeling on the outsides of my breasts and vertical scars where my nipples once were.

    And this new exploration has not been without awkward moments (i.e. my right tissue expander likes to rotate during sex and sometimes we have to stop so I can jostle it back into the proper location)… I am sure my doctors would not approve that I jostle them around that much, but whatever, because sometimes you just need to roll with it.

    I was extremely apprehensive about showing my scars and wore a tank top or lingerie my first couple times… but soon I began to realize that my body was loved regardless of what I believed to be damaged goods… I think in the beginning, I had more hang-ups regarding my body that than my partners.

    So my brilliant piece of sexual advice is… Its sort of like going thru your first sexual encounters… again… because every thing changes! Sex becomes an adventure in self exploration of your body and your partners re-learning what it takes to make you happy. Because using the same methods that worked before, probably won’t be what you need now. And if you find someone who loves your body, scars in all, trust when they say you are beautiful and more amazing because of your battle wounds.

    • Chemobabe
      July 2, 2010 at 11:02 am

      thank you so much for sharing this with us. i’m sure it will help other women (and men!) in dealing with these kinds of body changes.

  2. Amanda
    July 2, 2010 at 11:49 am

    I think a lot of people may not respond as this is generally a very difficult and private topic, but I think it’s great that you’ve put it out there.

    This has been a huge issue for me. In the last 2 years, I’ve lost a breast, gained 70 lbs, lost my hair, and then had my repordictive organs removed. As I was diagnosed after only 7 months of marriage, this really just didn’t seem fair to me. (It’s not fair for any of us!) I had always been fairly body confident and now I do feel kind of… broken. Bedies the fact that I do feel as though my body has betrayed me. Whether my husband tries or works with me or not is not really the issue. I want to move forward, and feel sexy, but it’s not an easy thing, and it’s not something you can “talk though”, though I do discuss the issue with my therapist.

    I have had discussions with drs about the “how” of sex — like vaginal moisturizers, etc., but no one has asked about how it’s actually going. Heck, only 1!!!! Dr asked me if I wanted children during this whole debacle.

    SarahMac seems to have a great attitude and I do hope that I get there someday!

    Thanks for bringing this topic up!

  3. Denise
    July 2, 2010 at 12:37 pm

    My experience has been utterly horrific. The man I’ve had wicked sexual chemistry with for years suddenly wouldn’t touch me after I was diagnosed. In fact, he started sleeping with his ex wife again.

    Needless to say that on top of my self image issues, the year of treatment, the baldness, the scars… I don’t know if I will ever regain my confidence or feel beautiful again.

    My libido has definitely taken a hit, but it is returning, however I just don’t see myself looking for someone new at this point because of the confidence issues. Hopefully that will pass as my hair grows back and I shed the bit of weight I gained.

    There is so much to have to deal with. No one should have to go through what we do. It breaks my heart to know that I’m not alone in it.

  4. Ilana
    July 2, 2010 at 1:09 pm

    My friend, Dr. Sueann Mark, is a Clinical Sexologist in San Francisco, who also happens to be a young adult breast cancer survivor. She is now focusing her practice around breast cancer/cancer patients and sex. Her website is http://drsueannmark.com/ She’s awesome and really knows what she’s talking about since she’s been there. So for anyone who’s reading this, but is too shy to admit something is wrong, call Sueann. She can help!

  5. Cindy
    July 2, 2010 at 3:56 pm

    I think its great you are talking about it. Its been 6 years clean from breast cancer for me. The chemo pushed me into menopause. I am having a harder time having an orgasm. Of course, the Doctors do NOT want me to have any hormones. In fact I was just searching around for info on this. Great job. Thanks

  6. ML
    July 2, 2010 at 4:46 pm

    Thank you so much for covering this very overlooked topic. While I don’t have cancer, I have friends who do, but no one has mentioned this.

    Just over a year ago, I developed a nice, slow-growing online relationship with a wonderful man. Two months later, he (a non-smoker) was diagnosed with stage 4 lung cancer, and his communication with me turned to nearly constant talk of sex. I kept asking him what made him change that way, and we decided it *may* have been his reaction to the radiation and chemo, but I couldn’t get him to ask his doctor.

    While I was reading your blog, I kept waiting to get to that part, then near the end – there it was:
    “… some people find that they have a surge in their libidos … immediately after diagnosis…” Sooo relieved to hear this! It explained a lot!

    Thanks for the link, Ilana, in the post before mine.

    Thanks, Chemo-Babe! Luv you!

  7. Beckye
    July 3, 2010 at 9:00 pm

    One thing my oncologist said was that she had heard that olive oil was good as a lubricant after chemo puts you into menopause. I didn’t think much of it when she told me. After she said it about 3 times over the months, I finally tried it. Bingo! Works great! Make sure you get enough coverage and enough of it, but — great stuff! Also can be used to prevent the vaginal atrophy that can occur with dryness. :D Hope this helps!

  8. Chemobabe
    July 9, 2010 at 11:46 am

    a friend of mine started a great blog on this topic called OncoLibido. please feel free to check it out and contribute your stories — anonymously if you prefer! http://oncolibido.wordpress.com/

  9. April 6, 2011 at 8:17 am

    My sex life took a terrible hit after my double mastectomy, and continues to suffer 5 years later. One of the reasons I am a health activist now is that I want to give people better information during their decision-making BEFORE surgery. It sickens me to hear that women still aren’t asked if they would miss their nipples!
    I sure miss mine!
    Jamie
    Elective mastectomy—what I wish my doctor had told me. http://bit.ly/eSLPkH

  10. Pat
    April 6, 2011 at 8:53 am

    It took 2 yrs for me feel or want any sexual contact. I am lucky to have a patient husband and that’s not saying we didn’t try! I started walking this Jan/09, I’ve worked up to 3-4 miles, 3-5x a week and I just started a workout video 3x a week for an hour. Since then I have not only lost two dress sizes but most importantly, my Libido has returned better than before treatment!! I had lost hope that I would never feel sexy again, but I strongly urge exercise as soon as you are healthy and strong enough. It’s a natural wonder drug, physically and mentally. I elected for a mastectomy and never regretted it for a minute even after all the pain (occasional discomfort) and weight gain not to mention all the mental anguish! I am by far, not where I was before treatment, but I can honestly say somethings are better and somethings are just different. I wish everyone a speedy and healthy recovery!

  11. April 6, 2011 at 1:48 pm

    My shrink used to say, sex can be a use it or lose it proposition. The more you have sex, the more you want to have sex.

    She would convince cancer survivors to try to have sex even if they had low libido due to surgery, treatment, and let’s not forget the impact of anti-depressants.

    Dr J would propose the use of sex toys, erotica, romantic settings, almond or olive oil, and especially cunnilingus to increase a woman’s arousal.

    I find that living with stage IV breast cancer for the past 8+ years and constantly being on treatment has been much more challenging to my sex life than being in treatment for early stage breast cancer. Then I thought I would someday leave CancerLand. Now that I live here permanently, sex seems much less important than living a good life in other respects. I’d love to know if you hear from other women with metastatic disease on this topic.

    Still hoping for a cure in my now-limited lifetime….

  12. Fred
    January 13, 2012 at 5:09 pm

    I guess I’ll be the first male to reply…I had rectal cancer, and the radiation in the pelvic area gave me ED. Viagra works, but it means sex has to be a scheduled event. Not sexy. It’s downright humiliating for a 39-year-old that used to be, well…quite the stud.

  13. January 15, 2012 at 11:51 am

    A friend recently started this website to help cancer patients regain their sex lives.
    http://www.recoversex.com

  14. January 16, 2012 at 9:31 am

    My goodness. Over a year outta of treatment and this is still an issue for me. It’s like my sex drive was switched off. I’ve had to tell my husband ‘you initiate, cause I just forget’ . . . which isn’t so romantic.

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