Hormone therapy to shrink or slow the growth of prostate cancer is one of the most common treatments for the disease. New York Times editor Dana Jennings, who was diagnosed with prostate cancer earlier this year, talks about his own treatment with the drug Lupron.
By Dana Jennings
The day after my most recent hormone injection for prostate cancer, I told my wife, Deb, that I had a headache, hot flashes, cramps and was very, very hungry.
Dana Jennings. (Lonnie Schlein/The New York Times)She said, “Sweetie, you’re having your period.” We both laughed. (Laughter is a crucial therapy in my treatment.)
Those are just a few of the side effects I’ve been experiencing on Lupron, which is part of the hormonal treatment for my advanced case of prostate cancer. Lupron is a testosterone suppressant, designed to starve hormone-dependent cancer cells of the fuel (testosterone) that they crave in order to grow. My doctors believe, and studies indicate, that using hormonal therapy to complement my radiation treatments, which are scheduled to start next month, will give me a better chance of being cured, of survival.
In the past couple weeks, I’ve also had back, joint and muscle aches, random itchiness: that spider-crawling-on-your-skin feeling, cotton mouth, sudden fatigue and fleeting bursts of pain in my jaw, chest and armpits. These are not complaints, just observations.
Oh, and my testicles are shrinking. There’s also intermittent testicle tenderness and, sometimes, they get so warm they feel as if they’re on simmer. And the most unexpected side effect, so far, is that sometimes during sex, a Lupron headache suddenly descends and hammers at my skull.
Essentially, my Lupron shots are inducing biochemical (but reversible) castration. Besides the hot flashes and shrinking testicles, another potential side effect is that a man’s breasts grow larger and more sensitive. Now, I’ll tell you straight up, no doctor ever sits you down and says, “Son, to cure you, we might have to kind of turn you into a woman.” I suspect that some men would almost rather die than have hot flashes and larger breasts.
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
These facts home in on why so many men often have trouble talking about prostate cancer. The treatment of the disease strikes at the very heart of our clichéd, John Wayne image of the American male. Impotence and incontinence, cramps and man-breasts just don’t sell pickup trucks and the King of Beers, hoss. These symptoms are not some mere midlife crisis — more like a change-of-life crisis — that can be salved or solved with topical (and typical) macho palliatives, like buying a candy-apple-red Hummer or having an extramarital affair. They shake the very pillars of what we talk about when we talk about being a man.
I’m trying to cope with my prostate cancer, its treatment and its retinue of emasculating side effects by gathering myself each morning, seeking the man I still am — that I know I am — in the steamy bathroom mirror, and swearing to love all the things I love in this sweet old world more than ever: My wife and my sons, my faith, and my friends (and classic soul and country music).
I refuse to become my side effects and have decided that side effects are only side effects, a dark but necessary door to walk through toward the possibility of being well. And, hey, at least my voice is still deep.
Other common side effects of Lupron include lessened sexual desire (not yet, in my case), impotence (it depends on your definition) and osteoporosis — I’m taking a calcium supplement twice a day and walking miles and miles to try to prevent that.
When it comes to my current side effects, the hot flashes are the strangest — and, literally, keep me awake at night. Sometimes, they feel like an unusually warm spring day creeping up my back. Other times, they’re like being jammed into a stuffed New York City subway car in August, and the air-conditioning is broken. My healthy red glow? Chemically induced.
So, on any given Sunday this fall, you’ll find me nesting on the couch with my 22-year-old son, Drew, crunching on salty snacks (I told you that I was very, very hungry), nursing the one porter or stout I treat myself to, and watching the N.F.L. — my face flushed with the occasional hot flash, and “kegeling” all the while. You women remember kegeling — the contracting and relaxing of the muscles that make up the pelvic floor, exercises recommended before and after pregnancy. Well, prostate cancer patients need to do them, too, mainly to help improve bladder control.
It’s true. Real men — even when they’re on Lupron — can kegel and watch the N.F.L. at the same time.
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This is not how I would want such an apparently good man to learn what it’s like to be more like a woman!
Heartfelt wishes for full recovery, and thanks for sharing what it’s like to be a real man.
— WesleyMy treatment was surgery…yes, some initial problems with incontinence and impotence. No flashes thank goodness! Pills didn’t work, but injections do very well, thank you. It takes a while to get used to shooting up your member, to be sure. But life happens and life goes on. Just keep going. Gambate!
— ChoppedI’ve lived for over nine years thanks to quarterly Lupron shots whose manifold side effects Dana well describes, side effects which attenuate with time but never disappear. But staying alive always requires us to make a series of compromises, and if a person can infuse his mean daily fussing and scrambling and clawing with a sense of meaning borne of staring unblinkingly at mortality’s stark face and not being cowed by its menacing aspect, something elevating can emerge, ideally leavened by humor, that sublime defense, and an excitement at beating the odds for a little while longer and marveling at the ultimate improbability that we’ve evolved to be sentient and reflective at all.
— ElmerIt’s what we’ve all got to look forward to.
— R.S.NewarkI had a prostatectomy in January 1990 at 59, the only option I was given. I escaped incontinence but have suffered from impotence (E.D.) ever since. Good I’m not married. I have not been able to pursue a meaningful relationship with a woman and the inability to explain my affliction can be troubling. Nevertheless, I enjoy life, such as it is.
— JimHave just heard a discussion of a book called ”The Edge of Medicine”, a large part of which was devoted to Proton Beam Therapy, said to be especially good for prostate cancer. The author of the book is Dr. William Hanson (Hansen?) and it was being talked about on a public radio station on a very reliable program.
— jHas Mr. Jennings been informed of this type of treatment??
It’s great to read this column in the NYT. I’m so pleased that someone will write about the nitty-gritty of dealing with prostate cancer. I was diagnosed about 3 years ago and until this past summer I adopted the Watchful Waiting or Active Surveilance approach. Lucky for me that I had this time to adjust to what prostate cancer really meant emotionally. I am involved in a UCSF prostate support group and have an opportunity to discuss intimate fears with others in my position. Toward the end of this summer my Gleason moved to grade 7 and I started the dreaded hormone therapy (Trelstar LA) to shrink my prostate enough so that I could start “seed implant” radiation. I expect to continue hormones for only 6-9 months and have found that as bad as it is, it’s not as bad as I had feared.
— BillThanks, Dana, for your recognizable prostate wisdom. I was diagnosed at 75, was lucky to have three excellent doctors at UVM College of Medicine and Fletcher-Allen Health Care in Vermont who indeed did cover all the therapies and options with me in generous and lengthy consultations. And it was, evenutally, I who made the decision to go the Lupron route. Exercise, a sense of humor, and work (I’m a working journalist, too) will help us set far and away the grim reaper’s deadline.
— Karl DeckerFunny how loss of testosterone does not affect your desire for football. Must be a neanderthal genetic predispostion. My wife would not watch the NFL even if it was played with the “Survivor Members”. I am off the lupron since October and still get the red faces. I have a craving for beer and drink non-alcoholic type. The muscle wasting bothers me with my blue ustoo wrist band used to be tight on my arm now it slides up and down my arm. I am not able to work out with weights because of ulnar neuropathy in one arm and torn rotator cuff in the other shoulder. But as a co-worker said the other day ” John looks like he could run a marathon he looks so healthy “. Funny how one is preceived to be healthy with advanced cancer just because they are thin now. My doctor says that I have met all the bench marks for long term survival with psa <.01. With a gleason of 9 and very low psa to start with 1.8 at the highest I feel very blessed to have found the correct treatment.
— JohnWith so many men being diagnosed each day , blogs like your’s should be on the front page of every newspaper in this land of ours.
Peace, CCKMA
I have been on lupron for 6 months. I found drinking soy milk helped the hot flashes .
— BillThank you, Dana. Your candor and honesty are much appreciated.
— StevenBeing a member of “The Club” for the past four years (prostatectomy but no chemo or radiation), I’m all too familiar with at least some parts of the road you’re traveling.
As difficult as it is living in the 21st century, thank goodness we’re not back in the middle of the last one. We wouldn’t be having this conversation.
I’ll be watching your progress and wishing you all the best. Steven
Thanks for your humorous disclosure of what you are going through while on Lupron. I went through the very same things receiving those injections. Reading your description of the side effects brought a smile to my face. It was frustrating not being able (nor willing) to discuss them with anyone. The disease can be controlled (Thank God) and I’m happy to see that you are still appreciating the good things in life.
— LouI’ve been undergoing the Proton Beam Therapy for three weeks now and my symptoms are pretty much the same as Dana, albeit with different intensity. Temperature fluctuations are there, but mild; leg, back and side pain are sometimes excruciating, but transient; chest pain is brief but scary (feels like a heart attack, but passes quickly), nausea is there 8-10 hours a day and headaches border on debilitating….but I’m going to live…
— EdThanks for sharing Dana, I wish you well!
— MBVSounds like you’re keeping up a great attitude. As you say, all the inconvenience will be well worth it with recovery. And in the meantime it’s taking one day at a time and refusing to make cancer the most important thing in your life.
Hope you and your family are all getting lots of support at this difficult time.
Anne Orchard
— Anne OrchardAuthor ‘Their Cancer - Your Journey’
http://www.familiesfacingcancer.org
Thank you Dana, for sharing your journey. I’ve learned more about how men identify their own masculinity and sexuality during my husband’s journey with prostate cancer. Until this cancer happened to us, I thought women were the gender with the most to lose in terms of their own sexual identity–though the aging process or things like breast cancer. Now I understand that both men and women have a complex relationship with their own gender and sexual roles. I’ve grown much closer to my husband as he has shared his own vulnerabilities and fears with me. Our relationship has blossomed even as our plumbing has become aged and finicky.
— masieI used Lupron for several months before doing radiation seeds. Did not love the temporary side effects but appreciated the killing of cancer cells so that the brachy therapy (seeds) would have a shrunken target, require fewer seeds and pose less risk of damage from the radiation that might lead to complications. Thirteen years later I am fully recovered and did not suffer either long term incontinence or impotence. Lupron did create short term impotence but that ceased within 2 months of stopping the drug. Now at 63 running marathons and feeling great.
— Jamie McKenzieThey’ll be growing prostates soon in the laboratories, I hope, from your own cells. Until then, courage, gentlemen. Your presence on earth is greatly appreciated.
— JoannI, too, am on Lupron, in my second year after radiation.
My case was among the 10% of prostate cancers that is aggressive, fast spreading. Despite catching the cancer early thanks to an annual physical, and prompt surgery, it already had spread beyond the surgeon’s reach.
Fortunately, the side effects of Lupron for me are nowhere as severe as those of Dana Jennings. Oh, sure, hot flashes and so forth, but less severe.
But as my wife says repeatedlly, it sure is nice to be alive. Compared to death or the pain of advanced cancer, me experiencing hot flashes is nothing but humorous, and a reminder what my wife has gone through just by being a woman.
Take home lessons:
1. An annual physical, and prompt action, literally saved my life.
2. The surgery had side effects, and the Lupron is causing side effects, but being alive trumps those easily. It’ll take more than Lupron to make me less than a man.
Dana, thanks for writing this important article, and for other commenters for joining in. Like your sitting with a son watching the NFL, I was touched by the very special ways my family responded to the reality of cancer . Lupron’s side effects are trivial in comparison.
— BillQuality of life, vs quantity of life. Lupron is fairly mild by some definitions, because it is temporary (at least for some). Yet still, we are prolonging life with more and more drugs, each of them with side effects, or replacing body parts, or hooking ourselves up to machines, all so that we live longer, and the question becomes do we live a quality life? For some, just to live is fulfillment enough. For others, it isn’t. People are a broad spectrum. Some find even in health that life is bitter and sweet, sometimes more bitter than sweet. These changes our cures induce sometimes raise the question of just what we are. If chemical castration cures, and yet for many men makes them a different person, a different creature, than what they once were, at what price cure? I’m asking honestly, and looking to the future when technology stretches even more and more our time on earth.
— bobYou may be too young to consider this but for older men how about simply removine
— Al Louardtheir testicles instead of the medication.
I’ve heard that a very very high % of men that live long enough will have this condition
but something else nails them first.
On a lighter note : I’ve a suggestion for mother nature:
When a man gets old enough his sack and contents dry up and drop off , also his beard stops growing.
I agree with you humor is great.
That is a brilliant testimonial!
I am becoming more and more interested in these matters, not only prostate cancer but other man’s health issues. First because I am a scientist, researching in the cancer (more linked to colon) but also because of my nature of being a man! All the cliches, as Dana as referred to, of the male image makes it vital to create awareness and to talk about these issues (kudos to you Dana).
I also became more aware of these after I have came accross with “Movember” initiative (www.movember.com).
If you don’t know what this is just go to their website and have a look. Briefly it is a money raising campaign to help fight prostate cancer.
It starts by growing a moustache during the month of November (Movember) and ask people to sponsor the moustache donating money to charity.
I am registered as a fund raiser (yes I am growing a moustache!) and my page is http://uk.movember.com/mospace/2034471. In case any of you would like to donate and sponsor my (or other people “Mos”) just click donate.
Good luck for you Dana (and all the other in treatment)
All the best
Ricardo
— RicardoThanks for your courageous exposition of something often kept hidden!
FROM DJ: Once again, thanks, all of you, for your comments, health tips, honesty, insights, kindness and, most of all, your stories. As with my previous post, I will read all of your comments and respond to some of you (and I’m still responding to some comments from last week). I wish that I could respond to all of you, but I actually do have a full-time job here. In future weeks, i will be writing about many of the issues that all of you raise: Incontinence, Impotence, Sex, Anger, Depression and many more. A few of you raised gender issues with this post. Believe me, with a sexually ambiguous name like Dana, I’ve spent my life being open to my feminine side. And, seriously, I’d rather spend the rest of my life as a soprano with hot flashes, than be dead.
— fredHi Dana: Thanks to you and others, like the Advanced Prostate Cancer blog at http://www.advancedprostatecancer.net , more and more men are sharing strategies for staying alive after prostate cancer diagnosis. Cheers for that!
— Darryl MitteldorfSorry, for double posting, but I thought to mention our prostate cancer survivor community’s all important Petition to Make Prostate Cancer a National Priority, at http://www.prostatecancerpetition.org President elect Obama will be hearing a lot from many different disease survivors about how important research funding is. But, as our personal experience has shown, diagnosis and the proper understanding of which prostate cancer is life threatening and which is not, requires both national attention and increased federal funding. So, please read and consider signing this all important grass roots effort..
— Darryl Mitteldorf