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Leah
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I wholeheartedly agree with the sentiments expressed in the article Prostate Cancer: Men Deserve Better, European Association of Urology, March 17, 2009 (exerpts below). http://www.alphagalileo.org/ViewItem.aspx?ItemId=56307&CultureCode=en. But talk is cheap. The question is, how do we bring about real change (change we can believe in!)? That’s a lot to ask — but heck, we are worth it. We also need a system in which newly diagnosed PC patients are seen by a multidisciplinary team of doctors, consisting perhaps of a urologist, radiation oncologist and medical oncologist. Fortunately, we have such a model now. I received this article a few weeks ago about a new, “patient-centered” unit at UCLA: “Urologic Oncology Institute Launched To Offer Multi-Disciplinary Care, Personalized Treatments To Patients” (March 04, 2009). https://mail.google.com/mail/?source=navclient#search/multi/11fdd1625aa370e2
In this case, a group of urologists (and patients) are pointing out some shortcomings of current PC management, such as a lack of communication between doctor and patient. In order to truly give consent to a treatment such as surgery or radiotherapy, I believe a patient must have been informed of the risks and benefits of all the reasonably accepted treatments available.
The burden is on the urologist to do this, because these doctors are almost always the “first stop” (and usually only stop) for newly diagnosed PC patients. There is an issue of time here, as the doctor can’t spend the whole day discussing PC with the patient, but one advocate has suggested that urologists provide patients with written materials about PC that they then could use for discussion. I think this is a good idea.
Also, the authors lament the poor quality of life that can ensue after prostate cancer treatment. But the comparison with breast cancer treatment is not a good one. Women who are treated for BC may have a better quality of life than men treated for PC for an obvious reason — their urinary and sexual functions have not been interfered with.
What we need is new treatments, applied sparingly, with fewer side effects.
Finally, I want to add a word about two neglected areas in PC treatment. We need to do more to diagnose and treat mood disorders and other psychological issues which may occur in PC patients. Second, we need to draw in a spouse or significant other (if there is one) into the discussion of PC options, and also monitor the partner’s well-being over time.
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“Prostate Cancer: Men Deserve Better”
“Vast improvements in prostate cancer recognition, management and treatment are needed, according to major prostate cancer groups speaking at the European Association of Urology’s 24th Annual Congress today.
“… The group’s overarching concern is a lack of clear and consistent information, particularly in areas that affect a man’s quality of life and that of his family. Prostate cancer and its treatments impact on all elements of a man’s life and not just his physical being. Many men experience urinary incontinence and impotence which can severely compromise their sense of masculinity and day-to-day quality of life, affecting their work, social activity and love life. The charter asks for practices to be put into place to better inform and educate men, their families and all those involved in prostate cancer care of the far-reaching effects of the disease and to encourage a more open, communicative and holistic approach to its treatment and management.
“Tom Hudson, Chairman of Europa Uomo, explains, ‘Our charter highlights the shortcomings in the current management of men with this condition but from a very practical viewpoint. For example, maintaining key relationships, love life and intimacy throughout prostate cancer is incredibly important but can often be overlooked. Many men feel uncomfortable discussing these issues and avoid them altogether. It is an area which is absolutely key to men’s quality of life and there needs to be a cultural shift in the way it is approached and managed’.
“Louis Denis, Secretary of Europa Uomo, adds “There is still much room for improvement in the management of prostate cancer and the fight against the disease is far from over. Prostate cancer does not receive anywhere near the level of interest and funding it warrants and this must be addressed. With the right holistic approach, men diagnosed with prostate cancer can live long and fulfilled lives. This approach has been taken very successfully to women with breast cancer and we believe that men deserve to be treated in the same way. At the moment, quality of life for men with prostate cancer can be very low, and steps must be taken to recognise and treat the whole person behind the disease, not just the disease itself.”
http://www.europa-uomo.org/
http://www.eaustockholm2009.org
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Leah
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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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Well folks, the circus has come to town. Unfortunately, the subject of this spectacle is prostate cancer. If you haven’t been in a coma in the last few days you must have seen the headline:
SEX CAUSES CANCER!!
Specifically, what the fuss is all about is a British study which found that men who engaged in “frequent” sexual activity in their 20′s and 30′s (including intercourse and masturbation), were more likely than their more abstinent peers to get prostate cancer at a “young age”. (See “Sexual Activity and Prostate Cancer Risk in Men Diagnosed at a Younger Age “, BJU International, January 2009). *But* there’s a caveat: men in their 50s who engaged in “frequent” masturbation were *less* likely to get PC.)
For me this is deja vu all over again. Some months ago I reported about a study which addressed this same issue and concluded that frequent “youthful” sex actually had a protective effect against prostate cancer. (See “Does Masturbation Cause Prostate Cancer?”, 4/23/08, http://prostatecancerblog.net/?s=promiscuity&x=16&y=10.) I expressed skepticism about those results and noted that I was aware of several older studies which had indeed found a positive correlation between *promiscuity* and prostate cancer.
I am not going to go into detail about the new study because I don’t find the results credible or useful. But I will give you a link to an excellent article in which a PC expert at the University of Chicago reviews the findings and puts them into perspective: “Link Between Sexual Activity and Increased Risk of Cancer Open to Question“, Medill Northwestern Report, Jan. 28, 2009.) http://news.medill.northwestern.edu/chicago/news.aspx?id=113327. This is all you need to read.
Also, I came across an article about this in Salon magazine that was written by a doctor and is very good (and not surprisingly, the “Most Read” item on the page). http://open.salon.com/cover.php. Note: graphics are for adults only!
One problem with the data relied upon here is that it comes from men in their 60′s who were reporting on sexual behavior that occurred 30 years ago. I can tell you that memory does not get better with age, and I have a while to go before I reach 60.
Also, I am aware of a phenomenon that might be at work here which has eluded the researchers. I recently read that *some* men who’ve had PC and have been negatively affected sexually as a result have a tendency to aggrandize their pre-treatment sexual prowess (consciously or not), as a way of coping with the effects of ED or other bodily changes on self-esteem and identity. “Changed Men: The Embodied Impact of Prostate Cancer”, Qualitative Health Research, Vol. 19, No. 2, 151-163 (2009).
I must say it’s surprising how many men in the PC forums report having engaged in Olympic-level sexual athletics *before their surgery*. One man even says that he was a sexual “legend” in his own time!
My point is, I wouldn’t be surprised if some of the men with PC reported higher levels of youthful sexual activity than they actually engaged in, and of course this would bias the results.
I find this situation a bit sad, because we finally have the world’s attention focused on prostate cancer, but not in a way which is productive. Indeed, it is counterproductive. I wish the message being trumpeted were that men should learn more about PC and get screened at an appropriate age. It is not plausible to me that any young man hearing that there may be a relationship between sex and prostate cancer is going to alter his behavior in any way. For one thing, PC is perceived as a “geezer” disease, and the youthful set won’t be paying attention anyway.
As one of the researchers involved in the new study advised: It’s best to “do everything in moderation” — including sex. That seems like sensible advice, but we didn’t need an expensive scientific study to tell us that. Not only is promiscuity a bad idea because of all the STD’s out there, but we now know that the virus that causes cervical cancer may be sexually transmitted. So why not others?
As far as I see, the only effect of a study that links sex and cancer will be to increase the shame and guilt that are already associated with this subject. For example, men over the ages have been well schooled about the “horrors” of masturbation. I have to say that my husband disagrees with me here: he says I have my head in the 1940′s — that negative perceptions of sex are a thing of the past. I say ideas that are deeply ingrained in our culture do not suddenly fade away.
That’s a sexual fantasy.
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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.” . . .