After Cancer, the Echo of Desire

Every week, New York Times editor Dana Jennings shares his experiences coping with prostate cancer.

Dana JenningsDana Jennings. (Lonnie Schlein/The New York Times)

Well, I can’t say I wasn’t warned. Eight months after learning that I had prostate cancer, my sex drive has vanished into a drug-induced limbo.

As recently as two weeks ago, my libido hadn’t yet checked out. But since then, hormone injections — like the oncologist’s elves — have kept doing their job, which is to suppress testosterone. No testosterone, no sex drive, and, my doctors and I hope, eventually no prostate cancer.

But even with the promise of being cured, the physical changes in my sex life and, more shockingly, my recent loss of interest in sex, are among the most difficult aspects of having prostate cancer — not just for me, but for my wife, too. Men often don’t want to talk about these changes, as if words and impotence couldn’t possibly coexist.

Prostate Cancer Journal
One Man’s Story

Dana Jennings blogs about his experience with prostate cancer.

But we men need to talk about it. Silence is the enemy when it comes to any disease. If we can talk about it, it will help us, help our spouses and help those who come after us.

Before surgery for prostate cancer, my sex life was like that of any other healthy 51-year-old man. But prostate cancer would change all that. My doctors told me that after surgery, attaining an erection might be difficult at first. And they told me that the hormone injections and radiation that came after could take a further toll on my sex life.

In the first few weeks after my surgery, though, I found myself so improbably and surprisingly aroused, even more than usual, that my teeth hurt. I had my first orgasm about three weeks post-op. But it arrived with two significant shocks: there was no erection, and it was dry.

Now, my surgeon might have told me about the “dry orgasm” before my surgery, but I sure don’t recall the subject being mentioned. And I don’t believe that the post-op literature dwells on it too much. Maybe I’m just not a good listener. While I knew that sex could be challenging after surgery, it never occurred to me that the prostate gland and seminal vesicles that are removed are the organs that produce ejaculatory fluid. After surgery, orgasm is still possible, but nothing comes out.

Those first post-op orgasms were reasonably intense (and they hurt my still tender incision a bit). Even after surgery, my interest in sex didn’t wane. But a hormone treatment called Lupron has ruthlessly slammed on the brakes. The first sign that the Lupron was doing its job was a decline in the intensity of orgasm. My last one was a faint ripple, a pebble flipped into a pond. With Lupron, first the orgasms diminish, then the lust.

Don’t misunderstand. I still find women attractive, especially my wife, and I still like the idea of sex. But there’s a keen sense of detachment as my testosterone level plummets, as my blood doesn’t rush and eddy toward the appropriate whorls and whirlpools. It’s as if I can only hear an echo of the carnal creature I once was.

But, if there’s one thing you learn from prostate cancer, sexuality is not sex, a fine point that our over-sexed mass culture has managed to blur, if not obliterate. I still want to hold my wife’s hand and snuggle. And I’d be only too happy to carry her books home from school.

So, whether you’re in the wistful grip of Lupron, or the throes of desire, I’ve realized that how well you cope with the after-effects of prostate cancer treatment boils down to how you want to define yourself as a man.

If you’re the kind of strutting rooster who grades himself solely on muscle mass, sexual gymnastics and the size of your Hummer, prostate cancer will send you spiraling into deep despair. If you treat this disease like a war, you’ll find yourself in a quagmire of depression that will get worse before it gets better.

As much as I savor, and ache for, the robust life — having once been as fit, randy and Guinness-loving as any rugby player — prostate cancer and its treatment have imposed on me a certain necessary asceticism.

I’m more content to cocoon at home — curled up on the couch in the den like a woolly-bear caterpillar — with family, good friends, books and music. I drink less. And now, sex is temporarily fading. It often feels as if I’m somehow being purified in a crucible of cancer.

That said, the mind still pants and leers, says, “Yeah, sex would be really, really nice.” But with less testosterone, without that hopped-up, hormone-injected V8 engine, the body gets distracted. Then the mind wanders. And instead of sex, I suddenly crave a Reese’s peanut butter cup, or pine to listen to the jazz trumpeter Lee Morgan slow-blues his way through “I Remember Clifford.” Or I want to watch Daffy Duck and Porky Pig lisp, stutter and sputter through “Duck Dodgers in the 24-1/2th Century.”

So, yeah, my libido has pretty much run away from home. But my doctors tell me that it’ll ramble back some old day — the prodigal libido — once treatment ends. And I trust them.

Meanwhile, wherever my sex drive has gotten to, I hope it’s having a damned good time.

Comments are no longer being accepted.

Barbara Jean Briskey December 2, 2008 · 7:05 am

Oh brave soul! Thank you for shining a bright light into the dark scary basement of treatment-related impotence. May ‘family, friends, books and music’ be enough for now. Blessings to you.
Beej

A difficult choice. Die of prostate cancer or suffer impotence, lack of libido, and perhaps urinary incontinence. Perhaps these side effects will fade, perhaps not.

What I don’t believe for a minute is the contention in some of the past posts that prostate cancer patients are not fully apprised of these side effects before going in.

As has been pointed out in this blog, men are notoriously bad about hearing what the doctor has to say.

FROM DJ: Jack, I think the problem is this when it comes to the explanation of side effects and other issues: Sometimes, doctors do skip over the details, and make assumptions. For example, my surgeon, whom I totally respect and like, looked shock when I said I didn’t know that having my prostate out would make me infertile. And doctors are so used to discussing side effects, that it’s hard for us patients to hear what they’re really saying through their professional drone.
Also, this a good place for me to reiterate that I don’t hold myself up as some kind of prostate cancer expert. I’m just to tell of my own journey, the best I can.

.

Was surgery the only option? Are there others? what about the radioactive seed implant? Are you continent?

FROM DJ: R.S. I wasn’t a candidate for the seeds, because I don’t have an anal opening. And I’m continent enough, but my current Lupron and radiation treatments complicate that.
.

Thanks for speaking out about this important subject.

I am a colon cancer survivor.

Good luck.

– CD

Helene Gelber-Lehman December 2, 2008 · 7:46 am

Sharing your internal thoughts and feelings about your prostate cancer-imposed odyssey is precious, not just because of your refreshing honesty and openness which hopefully will mentor others to be more open about what they are feeling, but also because you are helping to popularize new ways of thinking about life to those who’ve never had the need to re-evalute their priorities.
Men are so frequently testosterone-driven, their relationships and appreciation of women can and do become crude and insensitive…women being only available sperm receptacles that can cook and clean house, etc. A mans performance in the sexual arena is often an obsession, [to them] disallowing the opportunity of relationships that transcend their physical needs and they fail to realize of appreciate the myriad of factors that enter into the sexual/love/relationship equation for women.
While I and undoubtedly thousands of readers are rooting for your full recovery, your reflections on life without testosterone is providing a such refreshingly equalizing and enlightened perspective, [one I would hope would continue, even after testosterone returns] that I suspect your life will , as a result of this testosterone deprivation- will be far richer for the experience and hopefully will enrich the lives of all your readers.
If only testosterone levels could be regulated by the women who are affected, I suspect that intimate relationships would become far less arduous and communications, far more productive.

Dana, how well and accurately written. I’m sixty-three and nearing then end of Lupron (after surgery and then radiation/Lupron).

Know just what you mean, being interested in sex, being very much in love with my wife, appreciating the beauty of the female body, but, uh, nothing happens.

Half way thru my two year course of Lupron had one weak erection that was enough to bring happy tears to both my wife and me, told my doctors: one cheered, the other scheduled a testosterone test to see what was wrong! I choose to think of it as my body telling me to hang on, there is hope!

Fortunately, my wife and I had discussed this possibility before treatment began, and she made very clear that her priority was for me to get healthy for a long life , that we’d get through the rest. If it came to that, life with affection but no sex sure would beat the pain and suffering of having prostate cancer getting into my bones.

Dana, everything you write in this blog is so on point. Very, very well done.

John Patrick Thomas December 2, 2008 · 7:50 am

A word of thanks to Mr. Jennings for sharing his sexual experiences post op.. My prostate surgery was in May at the University Clinic in Hamburg, Germany. My advanced tumor was enclosed, successfully removed, and nerves on one side of the gland were saved, which bodes well for some sex life. I was given Cialis to get the ball rolling so to speak, but somehow I haven’t needed it. I knew seminal fluid was out of the picture, but I was surprised at the amount of urine that seems to be sporadically in play during the home stretch. There may be no liquid ejaculation in the old sense, but the process itself is hardly “dry”. I’m a bit shy engaging with my sexual partner just yet, not having previously been very interested in “water sports”. Given the stage of my tumor, I had rather resigned myself to a monastic existence in the future which would permit me to concentrate better on my other interests without the “distraction” of sex. As things are, it’s a new state of affairs, different from the past, but nonetheless still rather nice — so long as I have some tissues and a towel nearby. So far, so good. With or without sex, it’s still a good life. Lucky me. I wish the same for others.

I’ve used the pump. At least it allows me to have an erection, which would be impossible without this said invention, as pesky as it can sometimes be.

Thanks so much for writing about your experiences. While I don’t have prostrate cancer, I have considered the possibility of it and try to live my life accordingly. Much of the loss of drive that you described also comes from aging which I have just begun to experience in my mid 50’s. I had feared diminished sex drive in the years that it ruled my life, but now that it is approaching I realize that what is left underneath that veil is some really sweet moments with friends and loved ones.

Hi Dad,
This guy, Dana Jennings, blogs about prostate cancer every week. I thought you might be interested. This is the first article of his that I’ve read – and I appreciate him for his candidness and honesty.

His situation is different in that he’s taking hormones and is getting radiation after his surgery, but I hope you’re able to get something from his writings. Half way down his article on the right (Prostate Cancer Journal) there are links to his other blog entries.
I love you!
Trish

FROM DJ: Trish, thanks for sharing my post with your father. Having prostate cancer isn’t just about the men who have it, but it’s about our families, too.

A moving and gutsy response to a bad turn in life. I salute Mr. Jennings for his courage and his candor.

Forgive me if some of the text seems obscur but I ‘lived it’ in French so I may not use the right words.

I am writing to you as you posts seems excellent, not for publication, and there could be something useful in my very ordinary experience.

I had regular PSA tests since the age of 60. three years ago, at the age of 71, they started rising above 5 and continued rising to 8. I had another comprehensive PSA which confirmed the evolution, followed by a biopsy without anesthetic and quite painless apart from one core which was more unexpected than painful. We had a detailed examination and a Gleeson done on the cores showing that I had a cancer of the prostate that was progressing and suggested an increasing malignancy.
My GP was excellent throughout, giving me plenty of comprehensive common-sense advice and criteria by which to judge.
My specialist surgeon was young, rational and open-minded and also informative.
Throughout this period I visited a great many blogs, medical and general support sites which were mostly informative and helped me decide on what seemed to to be the best course of action (have my prostate removed).
The specialist warned me carefully that I would most likely (70%) become impotent even with post-op ‘intra-cavernous’ injections, and would probably remain so for a couple of years if not permanently. I would iniitially be incontinent, but with physio this would by and large be overcome apart from sudden movement involving weight, either mine or external.
I had the operation through my bellybutton and stayed in the clinic for ten days. Discomfort was nominal, and the support excellent. The physio came to visit me in the clinic several days before I was allowed out and briefed me on the exercises she proposed and the likely duration of the initial series which could be all I would need.
The analyses confirmed the diagnosis, but the specialist considered that, at least initially, no further treatment was needed.
The physio was successful after four months approximately and provided I continue my exercises at home (ten minutes per day) my incontinence limited to lifting heavy weights or sudden changes in the position of my weight. I walk regularly, and take long walks of 5-10 miles two of three times a month, which often involve walking up mountain paths.
I should say my friends were superb all through – supportive but completely natural, as before.
My sex life with women no longer exists; caresses and cuddles are fine but I am sure my companion suffers from lack of penetration. I did not tolerate the intracavernous injections, missing the target on two occasions, and suffering from a mild headache for 24 hours. My erection was poor but the act of injecting before sex virtually killed my desire. I can masturbate and reach a climax without an erection, the head of my penis inflates but the body remains floppy. I have a tendency to incontinence during masturbation but can by and large pre-empt it.
On the advice of another specialist who works with my urologist surgeon I am considering a penile implant and am just starting to research the subject. My sexual desire remains pretty much intact but not invasive as I have had a good long sex life for 50-60 years. (It would be nice, but…) I do not feel any need to prove myself sexually and there has been no insinuation on the subject by anyone in my presence.
I continued having my PSA tested quarterly. My PSA remained close to zero for the first 18 months and has since risen slightly three quarters running 0.28, 0.35, 0.55 – If it rises over 1 I may well have additional treatment – to be researched and decided early next year. This in turn may affect my decision on an implant.

Given my age, sex is not a significant problem for me personally but for my companion which, although she is very understanding, affects our relationship in turn.

Best regards and thanks for your blog. I read it regularly.

R

I read Dana Jenning’s blog with interest this morning. I’m glad to hear he is doing well and I am keeping him in my thoughts.

i’m wondering how his wife is coping with his loss of libido and how they negotiate this issue. I ask because I am struggling with a similar situation although without the anxiety of a cancer diagnosis. My husband is considerably older than I and at 81 seemingly has little natural testosterone. As a result, his desire for sex is virtually nonexistent.

We have a 26 year marriage with a history of very good, mutually satisfying sex. Losing this has been very difficult for me.

There are many activities one spouse can engage in when the other spouse is unwilling or unable. Hiking with friends comes to mind or attending my knitting group. Finding sex outside of marriage is not one of them, at least not for me.

I hope Dana’s doctor is right and he will regain his libido. I wish him all the best.

FROM DEB, DANA’S WIFE: Barbara –How do we negotiate? With humor and sensitivity! We are 51, have been married for almost 28 years, and have always been able to negotiate. We took the ‘in sickness and in health’ vow seriously, but we are hopefully optimistic that this too will pass.

Best of luck with your great fight. First, the only thing which gives you other options is to stay alive. When you succeed in that big endeavour you may tie a popsicle stick to it, or use other various techniques.

As you are discovering there is definitely life after prostate cancer, albeit it’s a different color: you were going to get there somehow; just took a shortcut!

It’s a manly thing, no it’s a great conquest, a victory unlike other to beat an enemy trying to snuff you out.

You sound like the fellow who could do it.

So much of what Mr. Jennings writes echoes my own experience dealing with the aftermath of prostate surgery (now five years past). What the doctor didn’t tell me, other prostate cancer survivors did. I was so fortunate to have some plain talking, tell-it-like-it-is friends who told me what I needed to know – vacuum pumps, e. d. medications, injections, none of which was successful. My doctor always had time and patience to talk, but some of the practical and personal issues he couldn’t really address because he had not experienced them himself. Since my surgery, I have spoken to many men who were facing what I had gone through. I feel that it is a privilege – and a duty – to help others. A big chunk of who I am was left in the operating room, but I am still who I’ve always been, and darned happy to be alive. As a senior citizen and a prostate cancer survivor, I was still able to trek in Bhutan and Tibet and walk safari in Africa. Life is sweet.

This brings back so many memories of my late husband’s similar journey with Prostate cancer. The doctors tell you very little about the aftereffects of the various treatments, especially the Lupron. My husband actually had hot flashes from the treatment, we used to joke about it, that finally he understood my menopause, he used to make fun of my flushing and sweats, until he got the same. The doctors also don’t mention that Lupron can persist in the body for years after it’s administered- the desire doesn’t always return, muscle mass can shrink, the bones become fragile, and a previously vital, athletic man can quickly descend into dispair. The doctors prescribe without informing their patients of some of the physical and emotional costs of the treatments. I wish Mr. Jennings the best, and I hope for the best for him.

FROM DJ: Louise, it’s very gratifying to hear so many female voices respond to this post. The wives and partners in our lives are an indispensable part of approaching prostate cancer. Without my wife’s support through all this, I’m not sure that I’d be up to writing about my cancer.

So the drug is turning you into a chick? I mean, cuddling, Daffy Duck, Reeses, couch, family and…pining?

So Dude Stuff is all about brain chemistry?

So we are animals, biological machines such that a simple change in chemical makeup substantially alters our personal identities?

Say it aint so.

Thanks for the insight. Thanks for another piece of evidence that we are not some special creations of the Invisible Sky God and somehow removed from the rest of the world around us.

We are animals just like the birds and fishes. We interact with and in our environment (meaning simply the chemicals we take in through our mouth and skin and lungs) and it is important to recognize this if we are to have long term health on our home island.

You are an inspiration…and like all good rugby players you are one funny f***. I am a 47 year old, former great athlete (okay just an ‘ okay’ college hockey player) with now current nighttime arousals, although like you, these are pee breaks and not “porno practice”.
Your words are valuable. Our lives are journeys of faith. Trust in your Doctor’s words, as I trust in yours. The drive will return. We will porn on! (although I might stop short of changing my name to Dirk Diggler)

“Sexuality is not sex, a fine point that our over-sexed mass culture has managed to blur, if not obliterate. ”

WELCOME to the world of women! Its not our over-sexed mass culture, but “male” culture, that missed this point! It might be helpful for every man to be on lepron for a month, so they can understand where most women are coming from…

Eduardo Weinschelbaum December 2, 2008 · 8:32 am

I am 53, had an open prostatectomy in December 2005, followed by radiation therapy a year later. Both failed to cure my cancer.

I underwent an experimental treatment earlier this year (based on a drug that is a cousin of the un-famous thalidomide) which also produced no results.

Will undergo full hormone therapy (as you are, but more): Lupron and Casodex for the testosterone, plus an antibiotic that should shield the testosterone-independent prostate cells (yes! there are testosterone independent prostate cells – all cancerous, since the non-cancerous ones were removed with the surgery), plus chemotherapy to take care of the androgen hormone-independent prostate cells (yes! there is still a group of die-hard prostate cells that can live without any androgen hormone, not only without testosterone).

I have news for you: Maybe (and only “maybe”) the chemotherapy, associated with the two other hormone treatments, will cure my cancer.

Reality is that, once you start with hormone deprivation treatments, you enter the “paliative” phase of your prostate cancer treatment: no cure, just management.

Granted, this management could last forty years and, as I tell my friends, we die many years from now, walking down the street, when a piano falls on our head, WITH prostate cancer.

On the dry orgasms, I believe doctors tend to “forget” to mention that. I too cannot recall my surgeon ever saying anything on this.

On sex drive, I will see once I start my treatment, later this month, but I am dreading it, after reading your column.

The good news is that most doctors now favour “intermittent” hormone therapy. In this way, during your “vacation” periods your body will still generate testosterone and you should have your sex drive back. Ahh! that is if you can get it up! Eventually, at least in my case, your potency does return.

The “evil twins” (impotence and incontinence) are beatable: usually you regain continence before potency, but at your age and with your health (bar the cancer, of course) you should have no problem.

Feel free to contact me.

I don’t understand why you didn’t have a nerve saving operation.I didn’t have to take any medicine after my prostate was removed. Maybe that is your problem. Sex drive is still there after having the removal. Don’t give up yet!

FROM DJ: Marty, I did have nerve-sparing open surgery. I wasn’t a candidate for the robotic method because of previous abdominal operations. And my lack of sex drive stems from being on the drug Lupron, not from the prostate being removed.

Dear Dana Jennings,

Thank you for sharing this usually unspoken side of prostate cancer. For all the families who have experienced this disease and for those who haven’t, you’ve opened the window and let the light of changing attitudes shine through.

I hope you’ve started a new outlook in the behavior and thinking for all of us. Your speaking frankly and honestly – and with good humor – of the thing that horrifies most men is one of the bravest acts. You obviously have a highly enlightened libido. May your reunion be joyful.

Terrific–thanks for this honest and helpful contribution for all men and women. Here’s wishing you a complete cure and soon, a return to carnal joy with your wife!

FROM DJ: In reading today’s reactions, I realized that as I continue my prostate-cancer journey that I’m part of this wonderful caravan of comments. Thank you, all of you, for the range of voices and experiences that you bring to this blog.

This is a transitional week for me. I started my external radiation treatments yesterday (with only a slight headache last night), so won’t be back online again until tonight. (I plan to write about the radiation next month.) As always, I’ll read all of your comments, and respond to some of you. But even if I don’t respond to you personally, remember that we’re all part of a significant conversation.

Anne Marie Cheney RN, MSN December 2, 2008 · 9:00 am

As is so often the case, the best information about the experience of an illness comes from the patient. You are so right about silence being the enemy. With your forthright comments you bring the scope of the disease into perspective, and bring hope to those facing similar circumstances. You also help the partners and spouses as they struggle with the effects of the disease on their mates and on their relationship. Thank you for your article and best wishes for a speedy recovery .

Wow. No, men don’t talk about this. I can’t believe it’s 9 am and there are no comments yet.

Thanks, Dana, for being so clear and honest.

FROM TPP — That’s the fault of me, the moderator, who has been in a meeting. working to get comments out now!