May 2008 Newsletter   #86 (v. 9, 5)
PCNG

Prostate Cancer Networking Group
of
 Greater Cincinnati
PCNG (pcngcincinnati.org) is a chapter of USTOO (www.ustoo.com)
Founder: Bob Kanter - Convener: Tom Young – Newsletter: 450 copies this issue - Editor: Kees DeJong
Facilitators: Stan Moczydlowski: 8/’03; Steven Plymire: 9/’03; Jerry Glenn: 1/’04; Jack Ramsay: 5/’04;
Dick Fencl: 5/’05;: Jerry Bryan: 2/’07; Librarian: Stan Moczydlowski; Reviewers: Frits Roos, Daniel White

      Telephone contacts:

751-6888 Kees DeJong: 1996 (56), PSA 24, GS 9; IAD; EBRT+Brachy, IAD, AD, ketoconazole+HC, Leukine, estradiol patches; Taxotere, carboplatin, Avastin, Emcyt


871-3844
Carol Cappiello

528-2769 Gordon Huntley:1999, PSA 4, GS 9; RP & Orchiectomy

272-1820 Dick Fencl: 2003, PSA 14, GS 6, EBRT+Brachy

 

733-5745 Bill Riggs: 1995, 
PSA 33, GS 6; RP, EBRT, AD 

221-6736 John Hoffmann: 1997, PSA 5, GS 6; RP, EBRT 

 

984-3343 Tom Young: 2002, PSA 7.8, GS 6; RP

19/20xx: year of diagnosis;  PSA: Prostate Specific Antigen;  GS: Gleason Score;  RP: Radical Prostatectomy;  EBRT: External Beam Radiation Therapy;  Brachy: Brachytherapy ('seeds'), and  AD: Hormonal Therapy: Androgen Deprivation
Carol Cappiello is a partner of a PC patient; she will be happy to answer any questions about PC,
in particular from other partners


Our 18th APC Meeting will be held before the Large Meeting
Men with Advanced Prostate Cancer, please, come!!
From 5.30 to 6.30 pm; bring your spouses/partners, some food will be served.

The next Large Group Meeting Will Be Held on Wednesday, May 28th
Women Are Very Much Welcome!!
6.30--7.00 p.m.: hospitality and networking    
7.00--7.30 p.m.: new members and sharing
7.30 p.m.:
How to Make Small Changes that Give You Big Results
Julie Isphording

Julie Isphording, a 1984 Olympian, ran the first ever women’s Olympic marathon. She won the Los Angeles Marathon and was the top American at the New York City Marathon, the Boston Marathon and the Goodwill Games. Julie is also the director of Cincinnati’s Thanksgiving Day Race (10K), one of the oldest in the country, celebrating its 99th year, and hosting 12,000 runners and walkers.
She is an award-winning NPR syndicated radio talk show host & producer, television personality, and the author of three books.
A popular motivational speaker, Julie has given more than 2000 speeches across the country to Fortune 500 businesses including McDonalds, Procter & Gamble and Toyota and to charitable organizations. As a spokesperson for the Lindner Center of Hope, she is a national advocate for mental health.

8.30--9.00 p.m.: hospitality and networking


Next Small Discussion Group Meeting (for Men only) will be held on
Wednesday, June 11th, from 7.00-9.00 pm at the Wellness Community


UC’s Cancer Education Day; Barrett Center Cancer Award Dinner, and PCNG Cards

    Dillard Creech, Jerry Bryan, Ben Floyd and I attended the UC Cancer Education Day on May 10th. We reached out to a number of prostate cancer patients.
    On May 9th, I attended the Barrett Center Cancer Award Dinner. Hershel Chalk was recognized for working tirelessly in the African-American community promoting prostate cancer awareness. I also ran into Julie Isphording, who has written a new book, “Get Healthy Get Happy.” She has agreed to speak at our upcoming meeting.
    On Wednesday, May 14th, I attended a luncheon at the Queen City Club. I distributed 80 PCNG cards and made an appeal to the attendees regarding prostate cancer awareness, PCNG, and The Wellness Community. Please use our cards.
                                                      Tom Young

This article in the New York Times was also published as a blog―168 comments have been posted thusfar!!
Some of these comments can be read below the article. If you are interested to read more, click here.


Tara Parker-Pope
No Answers for Men with Prostate Cancer
New York Times, February 5, 2008

    Last year, 218,000 men were diagnosed with prostate cancer, but nobody can tell them what type of treatment is most likely to save their lives.
Those are the findings of a troubling new report from the Agency for Healthcare Research and Quality, which analyzed hundreds of studies in an effort to advise men about the best treatments for prostate cancer. The report compared the effectiveness and risks of eight prostate cancer treatments, ranging from prostate removal to radioactive implants to no treatment at all. None of the studies provided definitive answers. Surprisingly, no single treatment emerged as superior to doing nothing at all.
“When it comes to prostate cancer, we have much to learn about which treatments work best,'’ said agency director Carolyn M. Clancy. “Patients should be informed about the benefits and harms of treatment options.”
    But the study, published online in the Annals of Internal Medicine, gives men very little guidance. Prostate cancer is typically a slow-growing cancer, and many men can live with it for years, often dying of another cause. But some men have aggressive prostate cancers, and last year 27,050 men died from the disease. The lifetime risk of being diagnosed with prostate cancer has nearly doubled to 20 percent since the late 1980s, due mostly to expanded use of the prostate-specific antigen, or P.S.A., blood test. But the risk of dying of prostate cancer remains about 3 percent. “Considerable overdetection and overtreatment may exist,'’ an agency press release stated.
The agency review is based on analysis of 592 published articles of various treatment strategies. The studies looked at treatments that use rapid freezing and thawing (cryotherapy); minimally invasive surgery (laparoscopic or robotic-assisted radical prostatectomy); testicle removal or hormone therapy (androgen deprivation therapy); and high-intensity ultrasound or radiation therapy. The study also evaluated research on “watchful waiting,'’ which means monitoring the cancer and initiating treatment only if it appears the disease is progressing.
    No one treatment emerged as the best option for prolonging life. And it was impossible to determine whether one treatment had fewer or less severe side effects.
Many of the treatments now in widespread use have never been evaluated in randomized controlled trials. In the research that is available, the characteristics of the men studied varied widely. And investigators used different definitions and methods, making reliable comparisons across studies impossible.
“Investigators’ definitions of adverse events and criteria to define event severity varied widely,'’ the report notes. “We could not derive precise estimates of specific adverse events for each treatment.” The risk of being diagnosed with prostate cancer has nearly doubled to 20 percent since the late 1980s, due mostly to expanded use of the prostate-specific antigen, or P.S.A., blood test. But the risk of dying of prostate cancer remains about 3 percent. “Considerable overdetection and overtreatment may exist,'’ an agency press release stated.
    The agency review is based on analysis of 592 published articles of various treatment strategies. The studies looked at treatments that use rapid freezing and thawing (cryotherapy); minimally invasive surgery (laparoscopic or robotic-assisted radical prostatectomy); testicle removal or hormone therapy (androgen deprivation therapy); and high-intensity ultrasound or radiation therapy. The study also evaluated research on “watchful waiting,'’ which means monitoring the cancer and initiating treatment only if it appears the disease is progressing.
    No one treatment emerged as the best option for prolonging life. And it was impossible to determine whether one treatment had fewer or less severe side effects
The report findings highlighted by the agency include:

* All active treatments cause health problems, primarily urinary incontinence, bowel problems and erectile dysfunction. The chances of bowel problems or sexual dysfunction are similar for surgery and external radiation. Leaking of urine is at least six times more likely among surgery patients than those treated by external radiation.
* Urinary leakage that occurs daily or more often was more common in men undergoing radical prostatectomy (35 percent) than external-beam radiation therapy (12 percent) or androgen deprivation (11 percent). Those were the findings of the 2003 Prostate Cancer Outcomes Study, a large, nationally representative survey of men with early prostate cancer.
* External-beam radiation therapy and androgen deprivation were each associated with a higher frequency of bowel urgency (3 percent) compared with radical prostatectomy (1 percent), according to the 2003 report.
* Inability to attain an erection was higher in men undergoing active intervention, especially androgen deprivation (86 percent) or radical prostatectomy (58 percent) than in men receiving watchful waiting (33 percent), according to the 2003 report.
* One study showed that men who choose surgery over watchful waiting are less likely to die or have their cancer spread, but another study found no difference in survival between surgery and watchful waiting. The benefit, if any, appears to be limited to men under 65. However, few patients in the study had cancer detected through P.S.A. tests. As a result, it’s not clear if the results are applicable to the majority of men diagnosed with the disease.
* Adding hormone therapy prior to prostate removal does not improve survival or decrease recurrence rates, but it does increase the chance of adverse events.
* Combining radiation with hormone therapy may decrease mortality. But compared with radiation treatment alone, the combination increases the chances of impotence and abnormal breast development.

    The most obvious trend identified in the complicated report is how little quality research exists for prostate cancer, despite the fact that it is the most diagnosed cancer in the country.
    Studies comparing brachytherapy, radical prostatectomy, external-beam radiation therapy or cryotherapy were discontinued because of poor recruitment. Two ongoing trials, one in the United States and one in Britain, are evaluating surgery and radiation treatments compared with watchful waiting in men with early cancer. Other studies in progress or development include cryotherapy versus external-beam radiation and a trial evaluating radical prostatectomy versus watchful waiting.
    “Successful completion of these studies is needed to provide accurate assessment of the comparative effectiveness and harms of therapies for localized prostate cancers,” the study authors said.

.
1. February 5 --My 92-year-old father is dying of prostate cancer. He will most likely not live to see his 93rd birthday this August. When first diagnosed 10 years ago (following a routine PSA test), he was told by his doctor, “Don’t worry, these things are so slow-growing, you will die of something else long before the cancer kills you.” He was given Lupron shots for several years until they became ineffective. A couple of years ago, after the cancer had spread into his spine, he was given external radiation treatments. Now the cancer is in all his bones, and, in unrelenting pain, he is hoping for death to come soon. He wonders, if he had had surgery at the time the cancer was first discovered, he might indeed have been able to die of “something else.” Considering that he still has no other serious health issues, I suspect that is the case. He might have lived to be a centenarian.

4. February 5 --Of course, the 92 year old given surgery as an 82 year old might have died on the table at 82 or had six years of incontinence before dying of an unrelated heart attack at 88.

2. February 5 --Having undergone radical prostatectomy rather pragmatically than thoughtfully, I now wish that I had done things differently. My life has been a nightmare of incontinence and erectile dysfunction. I should have let nature take its course.

7. February 5 --I am 54 years old and was diagnosed with prostate cancer alomst 4 years ago as a result of a PSA test. Since then I have undergone two treatments: radical surgery and external beam radiation therary when the PSA began to rise again. It is my belief that, had I not had the original test, I would most likely be dealing with bone cancer today. I question the comment on “overdetection and overtreatment” in the agencies report. With respect to detection, I think it is fair to say that earlier testing can detect disease or establishes baseline PSA levels that can aid in decision making on the results of future tests. While prostate cancer is generally slower growing, the cancers that are detected earlier are often the more agressive variants that can be sucessfully dealt with sooner rather than later. At the end of the day the patient (and his family) must make a treatment choice based on the best evidence available. There are no certainties in dealing with cancer and the decision involvies weighing up probabilities - you are betting with your life. You pit your life expectancy against the potential rate of cancer growth. The treatment side effects enter as secondary variables. The status quo of normal functions vs life with potential issues vs when you think the disease will metastitize and become painful and fatal. Many choose the watchful waiting option to defer making this choice and maximize their period of normalcy. I challenge the concept of “over treating” the disease. This has a negative connotation. There are more, and less invasive, options now available and men are taking advantage of these to deal with their cancers. How can this be a bad thing?

70. February 6 --Over the last decade since I was diagnosed and treated for prostate cancer there have been many VIP’s who contracted the disease, were treated and then appeared in the various media advocating for early detection and treatment in very positive presentations. Side effects, disease recurrence and other negative factors are not mentioned in these presentations. I think the net effect of this is that many more men have been tested, and treated over those years following their example and as a result added to the number treated unnecessarily.

17. February 5 --I am 45 years old and a pathologist. I refuse to have a PSA test for some of the following reasons 1) Pure and simple fear an abnormal result will come back. I realize most elevated results are in the context of benign prostate conditions, but even then the uncertainty of what an abnormal result implies can have overwhelming psychological impact. An abnormal result may mean months (years?) of fear, perhaps for nothing 2) Although I am playing what many might consider to be the crapshoot of hoping to “die with rather than of prostate cancer”, the fact is I will indeed die with it from a statistical point of view. 3% odds are pretty good in my mind. 3) I do many autopsies and regularly take samples for microscopic examination of the prostate of men dying of something else eg heart attack or lung cancer. It is amazing how often cancer is present in these “random” samples. I would say in the order of 30- 50% in men over 60. They do indeed die with their prostate cancer. My “bottom line” is that I respect men who undergo a PSA screening program for prostate cancer because it takes nerves of steel-which I don’t have- to deal with whatever result comes back. I am banking on those 3% odds to see me through- time will tell.

28.February 6 --As a Family Physician, this is a topic that I deal with daily and is one of the most challenging conundrum’s of medicine. You can read all you want about this topic and still not know what to do if you are diagnosed with prostate cancer. The reason boils down to the fact that it is so terribly common (Autopsy studies of men dying of any cause indicate as many as 80% of 80 year old men have some degree of prostate cancer and 40% of 40 year old men!!!) and therefore the numbers of men actually suffering and dying from it actually represent a very small percentage.

29.February 6 --(abbreviated) Many individuals want to believe that they have chosen the best treatment for their disease, and after they have made their choice and gone through treatment, have a desire to continue to justify their choice to their world, even if they might have some doubts. This is an example of cognitive dissonance reduction. The statement that there is no statistical significance (yet) means that there is no statistical evidence yet. The review shows that there is no one best therapy proven as of yet.
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As I tell all of my patients after we go through all of the options,
"the best option is the one you choose that you can go to bed at night and fall asleep knowing you made the right decision for you, based on what you think is the best treatment for you"
Dan White, MD (Radiation Oncologist)

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PCNG: PROSTATE CANCER NETWORKING GROUP
of Greater Cincinnati
c/o The Wellness Community
4918 Cooper Road
Cincinnati, OH 45242