[cancer] Sex on chemo

I’ve been holding on to a blog post concerning sex on chemo for quite some time. Not because I’m unwilling to discuss this, but because it’s quite explicit. That’s a bit outside the editorial bounds of this blog, not to mention which, I don’t want to be blacklisted as an inappropriate site by the various net nanny type filtering mechanisms.

Finally I realized that I could make that blog post into a short essay on a Web page, block search engines from it, and link directly. So, with the warning of explicit, NSFW content, I have posted Sex on chemo: A user’s guide to cancer and your love life.

Basically the problem comes down to this: oncology professionals don’t want to talk about sex. In some cases that may be individual squeamishness or boundary issues — though I personally think any doctor with those kind of boundary issues might want to rethink their chosen profession — but it’s more often a liability issue. As I say in the essay, oncologists are deeply paranoid about the possibility of chemo pregnancy. (Think Thalidomide.) As a result, they generally counsel absolute abstemption from sex, without acknowledging outercourse or any other aspects of nonprocreative sex such as older age, infertility or nonheteronormative lifestyles. For liability purposes, any endorsement of sexual behavior of any kind opens the door to a pregnancy-related lawsuit against the doctor and their institution.

Basically, once you are a cancer patient, your sexuality is assumed to be in remission. Other cancer patients have reported to me experiencing resistance or even revulsion from oncology professionals about the subject of sexuality. Which is a crying shame, and deeply inappropriate.

One of the key problems is that oncology professionals can’t tell you about the breakdown curves and toxicity risks of the chemo drugs and their byproducts, especially with respect to transmission through saliva or ejaculate. That’s not a subject that gets studied for obvious liability reasons. And on chemo, any bodily emissions are considered cytotoxic, systemically toxic, and possibly caustic, due to both the primary pharmaceutical load and the drug breakdown by-products. In other words, 100% risk, 100% of the time. Sex = bad. No cookie for you, chemo lad!

Which is obviously ridiculous. But in absence of clinical guidance, neither I nor any other responsible chemotherapy patient is going to risk their partner’s health. And there simply is no clinical guidance.

This abrogation of patient sexuality is a major failing of oncology as a specialty. The sometimes shaming of patients seeking counsel on the subject is a major failing of oncology professionals as compassionate, understanding human beings. The reality is we are all sexual beings, however we choose to express ourselves. Evolution put us on this earth to do two things: fuck off, and die. We fuck off to make more of ourselves, and we die to get out of their way.

A chemo patient generally has a pretty good handle on the dying part. Denying the rest of the process is unfair and dehumanizing. My little essay is a small brick being thrown at that wall of denial.

13 thoughts on “[cancer] Sex on chemo

  1. Laurie Mann says:

    Even gynecologists (!!!) have a reluctance to discuss these issues. Post-hysterectomy women generally do figure out outercourse pretty quickly (no intercourse for 6-12 weeks post-op, depending on the type of surgery you’ve had). I’m a little surprised doctors wouldn’t just tell you to use a condom if bodily fluids are “toxic.”

    1. Jay says:

      Risk of damaged pregnancy is so high that they don’t want to talk about it all for liability reasons, is the best I can determine. If I were counseled to use a condom and the condom broke or slipped off, and a bad pregnancy resulted, well, any decent liability offense lawyer could twist that into a multimillion dollar settlement. In point of fact, I’ve been vasectomized, and Lisa has a tubal ligation, so our risk of pregnancy is on a par with our risk of Rapture. Doesn’t matter.

      1. Laurie Mann says:

        Wow. That’s irrational. Enough “irrational” stuff happens around illness; pathetic when doctors engage in it as well.

      2. They told you no intercourse period, even with a condom? That doesn’t make terribly much sense. My mother took actual thalidomide for her cancer. She was a hospitalized invalid with a broken back who had been post-menopause for over a decade. Because she wasn’t able to participate in patient education, I had to do it on her behalf. The manufacturer of thalidomide made me sit through a video advising optimal contraception, which included use of combined methods, aka barrier/hormonal, etc. Then I had to sign papers promising she wasn’t pregnant. However, she was never told not to have intercourse. I suspect you’ve been given advice pulled directly from someone’s ass, unless your bodily fluids really are so hazardous that a condom break could be dangerous to your partner’s health. That seems unlikely to me, but it’s possible.

  2. There’s also the overly commom impression that “people in wheelchairs can’t have sex.” Ehh, no. My wife Hilde’s had to use a wheelchair for years, and we still do the whoopee dance on a fairly regular basis. (Currently on hold because my recently broken arm is still too tender for anything strenuous or athletic.)

    A few years back, we were seeing one of Hilde’s doctors, when I raised a question pertaining to sex. The doctor looked startled and said, “You still have sex?”

    *ahem* “She’s handicapped, not dead,” I replied. “We may not be able to do the whole Kama Sutra together, but we’re trying to work our way thru the Reader’s Digest condensed version.”

    At a later appointment, that same doctor said something that implied he thought I must be forcing my brutish needs onto my poor defenseless wife. We see a different doctor now.

  3. SteveC says:

    Wow! That’s awful to deal with that on top of all the other cancer related crap.

    I guess I should be more grateful for my wife’s oncologist. During her adjuvant chemo for Stage III colon cancer (FOLFOX) the oncologist had no problem discussing sex. She told us about the Toxic Avenger stuff but basically left it at, “If you do it, do it towards the end of the off week and use a condom.”

  4. Stevie says:

    One of the fascinating things about this is the vast cultural differences on either side of the pond. For example, a quick search on the website of the Macmillan Nurses, a major cancer charity in the UK which seeks to enhance the lives of those with cancer, pulls up 183 results, all of which are aimed at helping people to retain their sexuality.
    I don’t think that all of this is due to the increased risks of litigation on your side of the pond; I suspect that there is also a degree of Puritanism which we have moved further past. It’s horribly cliched but Europeans really do see these things differently…

  5. Lola says:

    I actually never even thought about this when I was on chemo for breast cancer a few years back. I was never warned by my doctor that exposure to my fluids could impact my partner. Thanks for posting this.

  6. Soulesswanderer says:

    Jay, I found your website via Kickstarter, and my heart broke. We share so many stories both with my adoptive father’s fight with cancer and my own with Crohn’s disease and now a mild lung cancer as well. I know what you’re fighting through with sex/chemo. It’s an odd paradigm and can be agonizing. Keep your head up (hehe no pun intended) and you’ll get through this, we both will. I’ve been on treatments for years now that have been “toxic” but you find a way for mutual pleasure and affection. Stay strong brother, you are not alone.

    1. Jay says:

      Thank you.

  7. Erica says:

    Interesting thought about the fear of pregnancy that might occur while on chemo being behind their reluctance to discuss this issue. It never occurred to me that this would be a concern because most cancer patients are (or have partners who are) past reproductive age, and it seems unlikely that even younger patients (or a male patient with a younger partner) are going to be having procreative sex during chemotherapy. So unless they’re dealing with someone with a strong religious proscription against birth control, the fear seems kind of out there. I’d assume that a frank discussion of the importance of contraception (or to consider whether or not one would be willing to abort if contraception failed), would clear the doctor of potential liability.

    Women with gynecological cancers, of course, have a whole issue with the treatments often amounting to female castration, but they’re supposed to be so grateful to be alive that they’ll happily submit to a lifetime of hormone blockers or whatever. Of course, many doctors are shocked when a woman past her mid forties expresses a concern about her sex life at all, because “old ladies” aren’t supposed to be sexy. And being sexual is all about being sexy to many people. Maybe men past a certain age get some of this too.

    But, sigh, that’s another issue.

    Thanks for sharing your experiences and thoughts here, as it’s definitely food for thought.

    My own experience is limited to my family doctor being reluctant to discuss the effects of antidepressants on certain aspects of one’s sexual experience with more than a shrug and a sad “what can you do?” smile. Something seems to happen in med school, maybe, doctors in general just don’t think sex is important. Maybe it’s those years of celibacy that are imposed by their 80+ hour weeks during their residencies.

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