The elephant in the bedroom – yeah, I talked about sex after cancer treatment

3 Aug

Illustration by Kimberly Carney / Fred Hutch News Service

Sex after cancer is complicated. You know what else is complicated? Writing about sex after cancer.

I tackled the topic last week in a two-part series for And even though it felt like I was walking around in my underpants when the stories came out (I talked a little bit about my own experience in this realm), I’m glad I covered it because it’s a big issue for cancer patients and it doesn’t get a ton of attention.

As I said in the story, cancer cuts us to our sexual quick. We lose body parts. We lose our libido. Oftentimes, we lose our sexual selves. Men struggle with impotence; women are plunged into menopause decades before they would naturally arrive; and many are left to sort it all out on their own.

Why? Because people often don’t feel comfortable talking about this stuff – not doctors, not patients, not even their partners. Sex after cancer has become the elephant in the bedroom.

Here’s a link to Part 1, which covers the sexual aftermath of cancer treatment and how surgery, chemo, radiation and hormone treatments — all those things they do to keep us alive — can cause all kinds of sexual side effects, from fatigue and body image issues to erectile dysfunction and vaginismus.

And here’s Part 2, which offers a few experts tips and tricks that we as patients can use to hack our post-treatment sex life.

As I said, it’s not easy to write about this stuff or talk about this stuff. So I’d like to give a huge shout out to two amazing patients: stage 4 anal cancer patient Michele Longabaugh and testicular cancer patient Jon Dibblee. Both were kind and courageous enough to talk about the sexual challenges they’ve faced since treatment and I can’t thank them enough for their candor and insights. Many thanks, also, to Nicki Boscia Durlester and her private breast and ovarian cancer Facebook group, Beyond the Pink Moon. It’s so important to have safe, supportive places like this where patients can bond and bare all.

Did your cancer and treatment lead to sexual side effects? Did your doctor downplay the damage or mention it at all? Let me know in the comments section. Still have more to say? Please join me and the folks at Fred Hutch  tomorrow (August 4) at 10 a.m. (Pacific) for a tweetchat on the topic. Use #ChatFredHutch to join the conversation.

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12 Responses to “The elephant in the bedroom – yeah, I talked about sex after cancer treatment”

  1. Kathleen Atkins August 4, 2016 at 5:49 am #

    Great pieces, Diane—both of them! Your readers will read them again and again, I bet.

    I read the first one twice, already, appreciating it.

    Meanwhile, it would be fun to see you again soon—do you have any free time coming up?


  2. Iridacea August 4, 2016 at 6:39 am #

    Just went and read your two part article. Thanks. I’ve wondered while my doctor was suggesting we shut down my ovaries so I could get zometa , if the additional negative impact on my sex life would really be worth the 3-4% improvement in outcome? Tamoxifen creates enough challenges. Thank you so much for tackling this topic.

  3. mindi0311 August 4, 2016 at 8:07 am #

    Sex after breast cancer is another reason why Oncoplastic Surgery for breast cancer is such a gift that more women need to seek out. I had a large tumor (4.2cm) with very small breasts……instead of losing one & possibly succumbing to the all too frequent prophylactic removal of my other breast, I woke up from breast cancer surgery with two new & improved breasts with the tumor removed. I had a mastoplexy (lift) with 2 small implants while both nipples were repositioned. Sensation started to return at 4 months and at one year full sensation was restored on both sides. This actually provided a honeymoon phase post breast cancer surgery as both my husband and myself loved the new girls.The goal of Oncoplastic surgery is to not only have the tumor removed, but to allow the woman to wake up looking as good as if not better than before surgery. For large breasted women they are offered a reduction with a lift and nipples preserved. The self esteem and confidence that this surgery option offered me changed the face of my life, my entire treatment and has the same survivorship of mastectomy. I highly encourage all women to see if they are a candidate for this state of the art option that was pioneered in the US by my surgeon, Dr. Melvin Silverstein, who is on staff at Hoag Memorial Hospital in Newport Beach, CA along with the brilliant plastic surgeon, Dr. Nirav Savalia. These two are educating doctors around the nation in their highly specialized techniques for preserving the breast during tumor removal.
    As for hormonal therapy ( I was ER/PR + Her2Neg) I lasted 6 months on Tamoxifen and have refused Arimidex. I suffered from depression, severe hot flashes (even though I was post menopausal) thinning skin, hair loss and fuzzy thinking. In lieu of prescription drugs I am taking a patented formula of DIM…(Diindolylmethane) from a team of scientists at UC Berkley called Berkley Immune Support. DIM acts as an estrogen down regulator…it supports the healthy form of estrogen and minimizes, estradiol, the bad form that tweaks into cancer.
    I also eat 80% raw, juice nearly daily, take a huge array of supplements, avoid any foods with hormones, exercise a lot, practice yoga & meditation.
    I have a few blogs going but also share a lot of good information on my FB page under Melinda Marie Clark. Please follow me on both sources if you are interested in learning more. I have book in the works and am available for questions about my state of the art treatment.
    Live a Radiant Life!
    Melinda Marie Clark

  4. usman waheed November 9, 2016 at 11:39 pm #

    I have just recovered from breast cancer and considering having a breast reconstruction surgery in the coming months. A doctor I consulted before was furious and was not able to answer to my entire question. I have just got answers to all of my remaining questions. Thanks!

  5. Val Sibel July 2, 2017 at 2:00 pm #

    Actually, after my breast cancer, i wanted to try an experiment and find out if my sex drive was still the same, none at all or what was going to happen. So being single, i found a nice man after a few that i wasn’t really turned on to and hax sex and found out it turned out just as good as if i never had cancer. I was very happy about that and continue to have fun.

  6. Val Sibel July 2, 2017 at 2:05 pm #

    I also am on anastrozole which really has no side effects for me.

    • SingleShot/DoubleWhammied August 28, 2017 at 8:14 pm #

      Hey Val:

      So happy to hear that you’re not having any side effects from the anastrozole (I’ve been on it since February and I’m definitely having some!).

      Also, really love your experiment! I think that’s a great approach for BC patients/survivors (especially the single ones!). We need to find out what’s going on with the old sex drive. So at some point, we need to just … uh … get back on the horse. ; )

      Thanks for reading and all the best,


  7. codinow July 13, 2017 at 7:25 am #

    Great reads, thank you. I am very fortunate in that area. We had a pretty healthy sex life before, and it only went on pause during necessary healing time. DH was very involved in the whole process through DX and surgery so he did not seem too upset by how the girls changed and their frankenboob phase. The tamoxifen has not done much to change my personal drive, and thankfully I have not had issues with dryness to deal with – but that is what silicone lubricants are for, right?

  8. Breastcancerconscript August 24, 2017 at 5:27 pm #

    Amen sister! Thanks for tackling this. Breast cancer makes a enuch (can’t find the female equivalent of the term. Help me out here if you have it) – between the nipple axing and the estrogen leaching meds we’re on. And the commercial creams or jels for lubrication are full of carcinogens! Have yet to broach this with my doc. You’ve inspired me!

    • SingleShot/DoubleWhammied August 28, 2017 at 8:10 pm #

      Really happy to hear that I inspired you. Thanks so much and let me know how things went with your doc talk. I am starting to see a few new products/procedures to help women get over this “hump” (so to speak). So maybe we’ll have more options moving forward. Take care and all the best!

  9. Going Greek September 3, 2017 at 8:59 am #

    In 6 years neither doc has so much as broached the subject. I find it almost funny. I bet almost anything that this is a discussion they would have with a male prostate cancer patient.

    • facewbush September 26, 2020 at 3:23 pm #

      You’re probably right, although I can’t confirm as: 1) my GP is a woman, 2) my prostate is fine, and 3) I lost both balls to cancer so hormones and sex are directly affected. Even if I go in for a flu shot she’ll ask about how my HRT is going.

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