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I have been getting letters from distraught women whose relationships with their husbands have suffered since their treatment for prostate cancer. This subject needs to be discussed extensively, but for starters, I have compiled a list of potential resources. (Excuse me if this is not the King’s English, but I have rushed this through because of the urgency of the topic.) If you know of a resource I haven’t mentioned, please contact me. By the way, the following list is not in any particular order.
“Saving Your Sex Life After Prostate Cancer“, Dr. John Mulhall. (Hilton Publishing, available at Amazon.com for $12.21.) A must-read. This book just came out and I have already come across a number of favorable reviews from patients. Dr. Mulhall knows his stuff. As an expert in Sexual Medicine at MSKCC, he treats about 800 PC patients a year.
http://www.renewintimacy.org/. The website of a couple, both professional psychotherapists, who have struggled with ED after prostate cancer. They do tout their own book, but I have heard it’s excellent.
sexhealthmatters.org . Website of the Sexual Medicine Society of North America. That’s where I look first for referrals to ED specialists of all kinds (MDs, social workers, nurses, etc). There is also a lot of general information on their webstite for people struggling with ED.
http://www.sda.uk.net, Sexual Dysfunction Association, UK. They have good “fact sheets” on various subjects relating to PC and ED. We in the U.S. need to catch up with them.
ladies-prostate-forum. “A wonderful online forum for *ladies only* that has an ‘intimacy’ section. The women are very supportive and caring.”
http://www.prostatepointers.org/mailman/listinfo/pcai. The PCAI (PC and Intimacy) listserv sponsored by prostatepointers.org (part of UsToo.org). This is an excellent discussion group for people who are struggling with relationship and sexual problems after treatment for PC. No subject is taboo, and the participants go out of their way to help. There is also a list of ED specialists posted at the end of each message.
prostatecancerinfolink.net. A good source of news as well as a “social network ” for people dealing with PC. The site debuted some months ago but already has about 700 participants. Check out such groups such as “Wives and Partners” and “ED and Incontinence” . There is also a “closed” group called ”Of Sex and Sexuality”. You just have to ask to join.
hisprostatecancer.com. A relatively new site by PC wife and professional writer Dana K. The content seems high-quality, and you can post your own story.
http://www.menshealthnetwork.org/wapc/index.php . Website of “Women Against Prostate Cancer”. These women have embarked on an important project, which is to compile information on PC and sexuality that can be given to patients and their partners *before* treatment. Forewarned is forearmed.
conquerprostatecancer.com. A blog which covers a variety of subjects, from ED treatments to humor. It also seeks to promote the book, “Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life”, by PC patient and rabbi, Ed Weinsberg (with Dr. Robert Carey). I read a preview of the book and liked it. One reader wrote that it gave her a window into what actually goes on in sex therapy, which the rabbi and his wife pursued after his treatment for PC (with robotic laparascopic surgery).
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Leah
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I occasionally do book reviews, and am really excited about this one. I recommend it sight unseen because the author is one of the foremost experts in the world on prostate cancer and sexuality. The book is titled:
“Saving Your Sex Life: A Guide for Men with Prostate Cancer”
by Dr. John Mulhall
(Hilton Publishing Company, 2008. Avalable at Amazon.com for $18.95)
I haven’t had a chance to read this book yet, but I wanted to get the news out. So I am providing excerpts from a review written by the Canadian Prostate Cancer Network (cpcn.org)
*I am also including a link to an article which appeared today in a medical journal. It features a full-length interview with Dr. Mulhall.* I suggest you read it as well. (The following is all one URL, you must cut and paste.) Here is a sample:
‘The most important thing is to convey realistic expectations. I tell all the patients who come to see me the same thing: Don’t base your decision [on which treatment to opt for] on sexual function. After three years, the outcomes from all the procedures are the same. Patients need to make an informed decision. If they don’t know what questions to ask and the physician doesn’t bring up sexual function, they’re going to make an ill-informed decision. Every day I have a man sit in front of me with tremendous regret—with tears in his eyes—who tells me, ‘If I had known it was going to be like this, I would have never opted for that treatment.’ Such patients weren’t given realistic expectations’.
http://www.renalandurologynews.com/
Prostate-Cancer-and-Sexual-Function/article/125900/
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Book Review from cpcn.org:
“Saving Your Sex Life: A Guide for Men with Prostate Cancer”
“Dr. John Mulhall has devoted much of his working life to studying and treating the sexual difficulties associated with prostate cancer and its therapy. He is currently Director of the Sexual and Reproductive Medicine Program in the Division of Urology at the Memorial Sloan-Kettering Cancer Center of New York. . . .
He reports that, in his practice at Memorial Sloan-Kettering, he sees more than 600 radical prostatectomy patients, approximately 150 radiation patients, and about 100 hormone therapy patients each year. They are all interested in pursuing improved sexual health following a prostate cancer diagnosis and treatment.
“Yet, according to Mulhall, ‘The simple fact of the matter is that most physicians and patients do not talk about sexual health in a routine medical interview.’ Sometimes, he suggests, doctors treating men who have prostate cancer shy away from discussing in detail various of the possible side effects or complications of particular treatments. Their main initial focus is to save their patients’ lives, of course. But an information gap is often the result.
“Consequently, Mulhall sees a need for solid, credible information, communicated in plain English, about the possible impact of prostate cancer on sexual function and on what options are available to treat sexual dysfunction and help men and their partners overcome the sexual problems associated with this disease and its treatment.
“His book, ‘Saving Your Sex Life: A Guide for Men with Prostate Cancer’, fits the bill. It is ‘aimed at giving you state-of-the-art, up-to-date, comprehensive information on the impact of prostate cancer treatments on your sexual function and what options are available to you for the treatment of such sexual problems,’ writes Mulhall.
“Chapters describe the basics of male sexual function, the connection between prostate enlargement and sexual dysfunction, the impact of a prostate cancer diagnosis on sexual function, and the possible effects of radical prostatectomy, prostate radiation, and hormone therapy on sexual function. Mulhall continues by examining various options available to avoid or treat sexual dysfunction, including penile rehabilitation and preservation, drugs such as Viagra, intra-urethral suppositories, penile injections, vacuum devices, penile implants, and other emerging therapies.
“His book is comprehensive and has obviously been written to answer the many questions patients have asked him in the course of his practice. ”Why am I experiencing urine leakage during sex?’ ‘Can I still father children?’ ‘My penis seems shorter now. Is that normal?” ‘ What are the risks of testosterone supplementation? Mulhall’s direct, open, and intelligible answers are obviously the result of considerable experience and research, and they convey the doctor’s concern for his patients as well as his very effective “bedside manner.” Here is a sample:
“It is surprising to me how many men come in to see me after radical prostatectomy who are not aware that they will not ejaculate again. While some physicians may not tell their patients about this, there are patients who are so stressed before surgery that they simply forget what was told to them. . . If a man who remains interested in future fertility, it is important that he banks sperm prior to the procedure. Banking sperm is a process by which a man masturbates into a cup and the semen is then examined and frozen (cryo-preserved) for future thawing and use down the road (p. 121-122)”.
“As you can see, the prose is easy to understand, and there is no dithering or avoidance of the facts. . . Dr. Mulhall’s book is an excellent resource for men with prostate cancer and their partners. It answers all those questions about sexual function after prostate cancer diagnosis and treatment that men and their loved ones may not have asked.” . . .
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Leah
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Last week I recommended that you take the “Perisho Prescription”, that is, get your minimal daily dose of humor from Jerry Perisho’s two excellent PC-related blogs, http://prostatecancerblog.net/?p=498. I am following up with the “Perisho Prescription, Part II”. Would you believe that in this climate of gloom and doom I am recommending that you read a book about cancer to cheer yourself up?
I am, because Jerry’s memoir of of life with prostate cancer,”I Barf, Therefore I Am: A Sensitive Comedy Writer’s Relationship With Cancer”, is tender, uplifting and beautifully written. Jerry treats the subject matter with the appropriate gravitas, but he liberally intersperses wit and humor. This is the work of a pro, and it shows.
And the take-home message is positive:
“I went through surgery, hormone therapy and chemotherapy and came out of it a stronger and better man. You can, too.”
Four years ago, Jerry Perisho had a good life. He was s a 52-year- old bank executive and comedy writer with a loving wife, three wonderful, accomplished sons and lots of good friends. And the backdrop for all this was balmy Southern California.
Then came “Hurricane Carcinoma” and upturned everything.
Being diagnosed with cancer is a knockout punch for everybody, even those with good “shock absorbers”. But Jerry picked himself up, took stock of his resources and put them to good use. First, he designated his wife, Christa, as his “patient-advocate”. She was to write down everything the doctors said. This is a great idea because the newly diagnosed patient is often too muddled to pay attention.
Then Jerry, Christa and the boys reviewed the medical information, did some research of their own, and decided on a treatment, minimally-invasive (robotic) surgery with Dr. Tim Wilson at City of Hope Cancer Center in suburban L.A.
Jerry’s description of the high-quality care he received from his “Dream Team” at City of Hope is truly inspiring. Everybody there treated him like family, he writes. So after the dust settled, Jerry and Christa returned to the hospital with a big basket of fresh bing cherries to give to the staff.
There are some truly hilarious anecdotes in this book. At one point we find the 6’6″ patient mentally preparing himself for “androgen deprivation” therapy. He decides he can deal with the mood swings and the hot flashes. But he worries that he’ll be tempted to blow the rent money on umpteen pairs of “cute, size 13 shoes”. ROFL.
And imagine this scene: Jerry is being interviewed by a nurse the day after surgery. She assures him that everything will be okay But almost as an afterthought she adds:
“You know your scrotum could swell to the size of a grapefruit. And there’s a chance your penis will turn black.”
Ouch.
But the best part of Jerry’s book is the patient-to-patient advice, the inside information you can’t get from any doctor, medical text or even the Internet. You have to hear it from someone who’s Been There. So I found the appendix to Jerry’s book, “Lessons I’ve Learned”, particularly helpful.
You can’t get the “Perisho Prescription” at your local pharmacy, but it is available online at Amazon and Barnes & Noble.
http://www.amazon.com/I-Barf-Therefore-Am/dp/0615208843/ref=sr_1_1?ie=UTF8&s=books&qid=1213649160&sr=8-
http://search.barnesandnoble.com/booksearch/results.asp?WRD=perisho
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If you read my recent posting, “Crazy, Funny Cancer”, you will know that I consider humor to be an essential part of every cancer patient’s (or caregiver’s) emotional “diet”. And there is some evidence that laughter actually boosts the body’s immune system.
So have you had your minimal daily requirement yet?
I am feeling a bit down today because I am grieving for a lost friend. So, to cheer myself up, I am going to investigate what is new in Jerry Perisho’s always entertaining prostate cancer universe. Jerry is a recent inductee to the online “Brotherhood of the Beast”, but fortunately for us, he is also a professional comedy writer who has penned jokes for the likes of Letterman and Leno. Jerry recently launched two funny and thoughtful blogs in which he muses about prostate cancer and life in general. I recommend them both.
The first blog, called “My Prostate’s in a Mason Jar by the Door” is “a mish-mash of serious and humorous views of prostate cancer”.
http://perishosprostate.blogspot.com/
The second blog relates to Jerry’s excellent prostate cancer memoir, “I Barf, Therefore I Am: A Sensitive Comedy Writer’s Relationship With Cancer”.
http://ibarfthereforeiam.blogspot.com/
I am going to write about Jerry’s book in a separate posting. So stay tuned.