Sex and the Cancer Patient

Hundreds of billions of dollars have been spent researching how cancer develops, grows and spreads in the body. A fraction of that money has been spent on quality of life issues.

This is how much has been comparatively spent on figuring out how to overcome loss of sexual drive as a result of cancer treatment:

>> Cue Sound: Crickets Chirping <<

About ten years ago, I attended the San Antonio Breast Cancer Symposium as a patient advocate. At the end of each day, advocates would gather with a panel of selected scientists and clinicians to discuss the highlights of the daily program and answer questions the advocates might have.

On the panel at one of the sessions was Dr. Susan Love, author of The Breast Book, esteemed UCLA breast surgeon and founder of Dr. Susan Love Research Foundation among other things. She is an amazing woman who can take complex issues and provide analogies and stories to make these issues understandable. From all of my encounters with her, I’ve found her to always be open minded and more than willing to answer tough questions.

One of the big questions on my mind that day was loss of libido that many cancer patients face after surgery, during treatment and even after treatment. This is particularly true of stage 4 cancer patients who are always on some sort of treatment. So I asked Dr. Love if she’s heard about that and what a patient might do to increase her drive.

You could see presenters and advocates squirm in their seats as I asked the question and Dr. Love even blushed a bit. She said she had known about the issue and suggested that patients do things to make them feel “in the mood,” like wearing sexy lingerie or listening to soothing music. You could hear the soft groans from the audience. This time, Dr. Love dropped the ball, so to speak.

A year or so ago, Dr. Love was diagnosed with AML, acute myelogenous leukemia and underwent bone marrow transplant. After her treatment, she gave a short talk to cancer researchers where she stated, “The only difference between a researcher and a patient is a diagnosis. We’re all patients.”

Well said.

This week, SHARE hosted a webinar featuring Dr. Love entitled “When the Doctor Becomes a Patient.” There was time at the end for Q&A. Guess what question I typed into the Q&A box?

“A few years back in San Antonio, I asked you what a patient could do to overcome loss of libido due to treatment. You answered ‘do something that gets you in the mood.’ Now that you’ve undergone cancer treatment yourself, would you reconsider your response?”

You could hear a little gasp on the line.

Dr. Love responded by saying that the libido issue is real and that it’s extremely complex; there are no real answers to how to overcome it. She publicly regretted her earlier response to my question.

I performed a silent victory fist pump.

Loss of sexual drive is a real issue for cancer patients. Consider these situations:

> Some men undergoing life-saving prostate cancer surgery are left impotent forever

> Mastectomies and reconstruction might leave breasts looking good most of the time, but the owner of the breasts have no sensation as the nerves are severed during surgery. Some are in constant pain from multiple surgeries.

> Young women with hormone sensitive cancers often face permanent premature menopause from surgery, chemotherapy, and/or anti-hormonal drug treatments. They cannot take hormone replacement therapy because this could cause the cancer to come back and potentially kill them.

> Chemotherapy kills fast growing cells, including all the linings to sexual organs. This makes intercourse painful, even dangerous should the patient contract a bacterial infection that the body can’t destroy.

> Cancer treatment is exhausting. Just doing daily activities like showering can send one straight to the couch for a long rest.

One of the biggest issues I hear from women I mentor on the breast cancer helpline who have metastatic disease is that at the very time when they need to be closest to their life partners, their lack of desire can pull them apart. Some cancer patients even divorce during treatment. Think Newt Gingrich and John Edwards.

In a few cancer patient publications, there is a line or two about loss of sexual interest from treatment. It’s listed as a minor side effect in those brochures, but not in pamphlets provided by drug manufacturers. So this condition can come as an unpleasant surprise to cancer patients. They don’t know this is normal for most and they feel inadequate, all adding to overall stress levels.

Most oncologists don’t talk about sexual dysfunction before treatment begins and have little to say if patients bring up the subject. There aren’t any clear-cut answers.

I guess you could say that cancer patients are lucky to be alive. What more do they want? Yes, there’s the pain, the loss of appetite, the overwhelming exhaustion, stress on all bodily organs, and the anxiety of not knowing if disease will spread and kill them.

So your deal with the devil is to take treatment, hope for a cure, and face both short term and long term side effects including saying “buh-bye libido” hopefully only for the time being.

-------

Sandi S
From my blog CatsNCancer.com

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33 replies. Join the discussion

I don't think very much of Dr. Susan Love myself..

The crap with the slash, poison, burn mentality is that it isn't really working at all.. Women are getting butchered with mastectomies and lumpectomies, semi-killed by chemo, and totally effed up with radiation, as well as drugged into a sexless state with hormonals..

And we are supposed to be what.. Grateful!

BS.. It is appalling.. There are alternatives to all of this mayhem, but most women don't get offered anything other than the BS of slash burn poison.. All these brave women getting mastectomies.. when they aren't brave.. but are really naive and are being taken advantage from a system that rewards the doctors who do the most damage...

Libido! Why would they care about that little itty bitty thing...

You are supposed to be happy to be alive, drowning in a sea of pink..

And then there is the FDA and the drug companies and the very slow progress of new medicines...

Thanks for your discussion... It's about time.. How much libido can anyone have if everything to do with them being women gets stripped away as part of a cure that is a big F failure?

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Its so hard being young 32 with stage with stage 4 breast cancer. Its hard for my hubby.......
http://sarahchoosingjoy.blogspot.com/

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Thank you for you candor. It truly is a problem that even at 50 years old I feel 80 in that department, and the spinal mets don't help! I've been stripped of ovaries, and every bit of Estrogen they can attack, and on chemo for 2 years now.

Sandy

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Oh, Sarah. Cancer sucks when it visits old people, like me...but it just kills me when a young woman with young kids are caught in it's wake. My sister-in-law passed away in '87 at the age of 42 after a long battle. We were guardians for her 2 kids, age 12 and 14, because their dad was out of the picture. I've seen first hand, as many of us have, how hard this disease is on young families. Most fervent hopes and prayers that they'll come up with just the right treatment for you and that you'll have many quality years with your beautiful family.

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I too am Stage 4, just turned 35. When I'm not in active treatment, I try to read erotic books which helps. I try to focus on the sensations (sometimes keep my eyes closed); that way I don't get distracted by the changes in my appearance. I am now on disability and no longer working so that helps because I have the chance to rest throughout the day when I need it.

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As the husband of a young (39 year old) Stage IV patient for the past year and cancer patient for the past six years, I wanted to thank you for writing this. Between the removal of her ovaries, the estrogen suppression, the anti-hormonals, the chemo, the usual horrific side effects of treatment and the fatigue, the sexual side of our relationship has basically died. My wife has, and admits to having, no libido (which I completely understand given what she has been through) and takes no joy in sex. I love my wife deeply (we have been together and happy since we were 19) and will with her and there for her and our three children no matter what. None of this is her fault and intellectually I understand this. However, the lack of sex and sexual intimacy just grinds me down and I don't see a path for it to get better. On the rare occasions when we are "together" it is clear that she would rather be doing anything else....it is tough to take as her partner and as a man even though I know the reasons are entirely beyond her control and were I in her shoes I'm sure I would have similar problems/issue. I don't push for sex because I know it causes her real pain during a period of time where she is already in pain physically and emotionally which makes me feel selfish and unkind particularly when I know my attentions are also unwanted (which makes me feel like whatever the opposite of sexy is). We have talked about it but it makes us both feel worse because (as the author alluded to above) there are no easy (or even hard) fixes to this particular problem at least for us. Despite knowing full well all of the perfectly good reasons for why she feels and responds the way she does to me sexually, I feel like part of my brain is pushing me to pull away and create emotional distance between us as a defense mechanism to preserve some semblance of my sexual self-worth. Gazing down the road ahead I can't really see why this part of our relationship is going to get better and I'm worried about the stress this has been putting and will continue to put our relationship. My own problems all seem so trivial compared to hers but it is affecting me in ways I don't like and am not sure how to deal with. I don't think there is a real solution (it certainly isn't sexy lingerie or backrubs) but I wanted to thank you for writing a post that focused on an aspect of the cancer experience that is not often spoken about. As a husband trying my best to support my wife and best friend as she deals with cancer I sometimes feel like I'm becoming collateral damage in this fight we are both in together. I feel like a selfish ass for writing this and for feeling these feelings as it seems so petty compared to everything she has to deal with but they are nevertheless real feelings that I must deal with somehow. Thanks for listening.

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Malbrossard,

What courage and candor you showed in writing this, and obviously you and your wife are very lucky to have one another through this god-awful disease. Thank you so much for sharing your feelings and thoughts with us, as it IS such a hard conversation to have with our own spouses. You shouldn't feel guilty for wanting that part of your relationship, but as you said, neither should she with all that her body is going through. I think we as patients disconnect from our bodies, because if we didn't it would be unbearable to face the bodily changes. We don't feel sexy, we don't see ourselves as desirable, we see our bodies as broken houses for our spirits and minds. So for me, I cling to what my mind and love and spirit can still give to those I love and to the world at large. But my body still feels like someone else's who I don't know anymore.

You are a dear and loving husband, and no doubt your wife is one lucky lady to have you. My husband is my Mr. Wonderful and deserving of a normal sex life and all of the loving support of his manhood, yet I can't seem to muster myself to give him that. He doesn't make demands, and always expresses how much he can't imagine what I am going through. But the guilt is overwhelming sometimes and the wall between us physically is a constant bedfellow. Thank God we still hug and hold hands and kiss, but I know that that isn't enough, not for a normal healthy man. I wish I had an answer for us, but I don't. Just know that you and your lovely wife are not alone.

Sandy

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Mal - your post was thoughtfully written and it made my heart ache. Cancer treatment is a taker and changes us in ways that are not always positive. Just at a time when one needs to be close to one's partner for love and support, loss of libido can tear apart the relationship. The partner missing the loss in intimacy is dissatisfied yet feels guilty for feelng that way, and the partner unable to participate in the act feels inadequate and stressed - not good for the healng process.

My husband of 38 years is a fabulous partner and has been at my side for 15 years, fighting terminal cancer. We hug a lot and kiss, but I know that is not at all satisfying as having a full sexual relationship that we once had. And having me just go through the motions hurts him even more. He doesn't like talking about it much because right now, there is no solution.

You and your wife seem to be in the same spot we are. It can feel like a trap with a big dose of guilt for all. I wish I had a magic answer for us. Your wife needs you now more than ever as you pointed out. And you miss having a complete relationship. It truly sucks.

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I know how hard it is when your libido is totally gone, but at the same time, if you are in a loving relationship, it is give and take...
Even if you don't feel like sex at all, there is still great pleasure (if it is not every week!!) in being able to give your partner the satisfaction he needs.

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Malbrossard, although I can't know exactly how you feel, I'm sure my husband has felt exactly this way. There was one point during my treatments when I considered having him find another sexual partner because I wanted him to feel fulfilled and I couldn't deliver. I don't know if he would have done it and I think it may have harmed our relationship more than helped it but that's how desperate I was getting. And try not to trivialize your feelings. My husband is always doing that too. He doesn't even want to admit when he's tired or has a headache because it can't possibly compare to how I'm feeling. You have the right to be tired, have a headache or feel whatever you feel. And you have the right to voice those issues. We still want to hear them.

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There is another small side issue here. I am older then most of you -71- and there is a natural slow down in that department as a result. The guilt is compounded by Viagra, etc. The commercials all over the sports channels and any other channels that appeal to men! The only advice that doctors can offer is to use estrogen cream which is taboo for must of us. Seems like we are caught in a catch 22!

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Hi all... I've been dealing with this same issue and lucky to have a patient loving boyfriend. Sexy lingerie? Shame on you, a Susan Love. Stupid answer. But the truth is, until someone goes through this, she cannot truly understand what patients are going through. My male oncologist told me about Astroglide. I stared at him through this "talk" in disbelief. I wasn't complaining about dryness and you need not tell me I can try various positions with it. I was talking about pain IF I even had the inkling to attempt having sexual intercourse. My internist gave me a cream that I put "up there" that has hyaluronic acid, vitamin E, aloe. It seems to have helped a little. I've been using it for a few weeks and on vacation next week will attempt inter course. In the meantime, ladies, I have mastered the perfect use of my hands. I don't mean to be crude. But I use both hands and take my tine trying to make it last for my beau for as long as possible. I may not be in the mood but it's the least I could do for him. And sexy lingerie or sweats and a tee--makes no difference. Just TRY to rise to the occasion. Pardon the pun. I love you all for sharing. I've been looking for a place to discuss this openly.

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And just what alternatives are there and where can a cancer patient learn about them?

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Good topic - I am the husband of a stage four wife. Ditto on the frustration although I do not feel guilty for having a normal sex drive and wanting to be with my wife - and I don't resent her for not being able to be with me. Remember, there is a difference between a cancer patient not feeling their sex drive due to treatments and the various things happening to their bodies AND their still remaining, down deep desire to have that intimacy. I know my wife wants to be with me but she neither has the libido aspect nor is it possible to have sex without a lot of pain. The solution offered by Liz1967 has worked extremely well for us - and I mean US as she gains great happiness in bringing me pleasure that way.
A final thought - I'm a Christian so we both see sex as God's good gift for both pleasure and procreation. husbands can serve their cancer patient wives by being understanding and self - controlled, but by also romancing them in other ways that make them feel special, loved, and desirable. We married the person they were and would become, even the person who lost their libido, or experiences diminished or intermittent libido. I can accept this as part of God's good plan for us, for our greater good and His greater glory. But We can only adopt that attitude through faith in Jesus Christ. Loss of libido is a serious side effect for many to most people with cancer and impacts our humanity for it is a God-given feature of who we are. But libido and sexuality does not define us at the core of our being. What does define us at the core of our being is that we are forgiven children of God, accepted by God because of the perfect life, sacrificial death on the cross, and resurrection from the dead of our Lord Jesus Christ. It is that perspective which has helped us, and continues to help us,through this difficult problem.

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I am a month shy of 74 and my wife is 72 and we have been married for 53 plus years now. She has her mastectomy about 18 or 19 years ago and went to stage four almost four years ago. I relate to all you have said here and fully understand the stress of it all. I can see how much you love your wife and care for her so deeply. I too feel the same way as you do, loving my own wife so much and caring for her so much. There has been little discussion of our lack if a sexual intimacy between us but she has expressed concern for me any number of times and I always assure her its OK with me and that I don't hold any expectations of her in that area, and I really don't. I accept the way things are between us and truly have no resentment over it at all. I say all if this not so that I might look good here, but so that I might express myself further on such a "taboo" ( so to speak) subject. I see myself as fortunate that at my age my libido has slowed down quite a bit, but that's not to say the desire dies not arise regularly. I hope what I am about to say does not offend anyone here but lets just say that when the desire does arise I take things into my own hands. It's not the same level of gratification but it does give a measure of gratification. Its the reason I can easily, honestly, and sincerely tell my wife I don't hold any expectations of her. My concern is that she not feel guilty or stresses out over not having the desire she once had for me. I want her to know that my love for her isn't dependent upon her accommodating my libido in any way. May I suggest you not feel guilty over wanting sex with your partner, treat yourself with the same compassion and understanding you have for your wife and do the best you can. We all know of men in the public eye who in similar circumstances turned to women other than their wife, I don't judge them but that is an alternative i want to avoid as I am sure you do too. Its good that others here have raised the topic for themselves as it is a very important but pretty much overlooked issue. As a man, I don't think I have either the right nor the knowledge or wisdom to offer to the women here, who suffer with these effects in ways I can only imagine. But its healthy to discuss openly and discreetly and may help to begin looking for better ways of dealing with the issue.

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Malbrossard, I am deeply moved by your truthful, vulnerable account of how it is to be stripped of the joy and comfort of physical connection with your loving wife. I guess from my own experience that despite the libido flying out the window, she will be also missing this part of your life together. Even when the rest of the body says "no", the Heart does not forget, it wants what it wants......
You sound like a very thoughtful, caring soul. Your wife's best friend and hero.
I have no personal experience with dealing with this particular heartbreak.....I suppose that's the only upside to having my spouse "do a runner" soon after I was diagnosed five years ago.....but I know now that even a very limited, compromised sex life would have been challenging, as much as I yearned for the comfort and connection.....I can feel both your loneliness and hers between the lines of your words. Bless you both, I hope things get better.

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So lovely to hear from supporting , trying hard to understand hubbys. I'm sure your wifes treasure you al beyond words.

Here is another side - and I hope its only mine.

The night I told hubby I had a lump in my breast, he told me to see a doctor and rolled over, away from me. He has never rolled back.
At New Year I get a peck on the cheek, he is very careful not to let our bodies touch .

On holiday , one night we had to share a bed. It was a big bed - and you could have got another couple between us.

I'm 65 and we have not made love for 8 years now. I'm not sure I even want to - but cuddles, comfort and feeling we belong together would be nice.

Hubby does all the cooking , he will take me nearly any were I want to go - he has turned into my brother.

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Anns_Mate, your reply showed up just after my post.....your down-to- earth, pragmatic solution made me smile and then laugh out loud ;D
One can take charge and become an owner/operator in this time-honoured fashion, and it needn't be solitary either. If she is having a "good day" health and energy-wise, the lady can join in and "help out", which seems nice and cosy. I suggest "audience participation" with some caution as there are so many variables in everyone's level of physical tolerance, so there is Never going to be a one-size-fits-all solution to the cancer/sex dilemma.
Quickly reviewing my own previous (fairly extensive) sexual repertoire, there is hardly anything that I could perform now without a considerable level of pain, if at all.....have all over body pains, no libido, no flexibility, peripheral neuropathy, distended abdomen, adhesions from bilateral mastectomy, sporadic, severe muscle cramping, loss of balance, etc.....that's before we even get to the loss of looks/body confidence or the state of the sex organs (probably rusted and full of cobwebs) I abstain for the same reasons I am no longer active in other previously enjoyed pastimes.
Since I no longer have a spouse, I am certainly out of the game.

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Dear Happy, this may not be the time or place and I've no idea what your circumstances are, but if you haven't spoken to your husband about this issue than why not try?! He shut you out because you have cancer!? Did he ever think HE might have cancer?? Eight years of avoiding this topic? Do you have cooties? Cooking and driving are great but you two are living with this giant elephant in the room that needs to be set free. Try reading IF THE BUDDHA MARRIED. Ask yourself what you really want in a husband. Remember your vows--for better or for worse. Perhaps you can both attend a support group during which you can open up in a neutral environment. Hubby is not only shutting you out, he's denying himself of life! There's a great line in Shawshank Redemption, "you can get busy living or get busy dying". Well, happy, Get busy living! And that is coming from a 45 y.o. with stage 4 metastatic breast cancer.

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Happy, have you ever asked for, or received an explanation from your husband regarding his behaviour?

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