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The PCNG or Prostate Cancer Networking Group is a support group for prostate cancer patients in Greater Cincinnati we meet twice a month: the second Wednesday of the month (small group of patients and a small group of care givers) and the last Wednesday (men and women, with a speaker, often a MD) NEXT SMALL GROUP MEETING WILL BE HELD ON MAY 8th, 7 pm: Please, come!! NEXT LARGE GROUP MEETING WILL BE HELD ON MAY 29th, 7 pm: Please, come!! 7-8: new members and networking; talk at 8: Prof. Peter Stambrook & Dr. Karen Knudsen: “News from the 2002 AACR meeting” the AACR is the American Association of Cancer Research - their annual meeting was in San Francisco April 6-10, 2002. Dr. Stambrook is chair of the Department of Cell Biology, Neurobiology & Anatomy, UC Dr. Karen Knudsen in his department is specialized in prostate cancer research: androgen receptor we meet at the Lynn Stern Center of "The Wellness Community", 4918 Cooper Road, tel. 791-4060 the convener of our ‘large group’ meeting is Robert Young Bob Kanter, Adrian Boie and Lou Stadler are conveners emeriti we have also a Newsletter published each month since August 2000 no costs, but donations will be appreciated. (treasurer: Jerry Smith, 1621 Raglan Av., Cincinnati OH 45230) please, make checks payable to the Wellness Community, a non-profit 501(c)3 organization our newsletters are archived at http://www.pcngcincinnati.org Eight PCNG members can be contacted by telephone: 779-0144 Adrian Boie: 1989, PSA 13, GS 9; RP, EBRT, IHT 751-6888 Kees DeJong: 1996, PSA 24, GS 9; IHT, EBRT+Brachy 221-6736 John Hoffmann: 1997, PSA 5, GS 6, RP, EBRT 528-2769 Gordon Huntley: 1999 PSA 4, GS 9, RP and Orchiectomy 733-5745 Bill Riggs: 1995, PSA 33, GS 6, RP, EBRT, HT 761-9645 Lou Stadler: 1987, PSA NA, GS 7; EBRT, HT 542-4908 Fran Stanton: 1999, PSA 157, GS 8; HT, EBRT+Brachy 321-1693 Robert Young: 1999, PSA >1,000, GS 7; HT 19xx: year of diagnosis - PSA: Prostate Specific Antigen - GS: Gleason Score - RP: Radical Prostatectomy EBRT: External Beam Radiation Therapy - Brachy: Brachytherapy ('seeds') - HT: Hormonal Therapy - IHT: Intermittent Hormonal Therapy In every struggle the only ones who can truly grasp your fear, your pain, your grief, and your stamina that may sometimes fail are those who share the battlefield with you. It is no different when the enemy is prostate cancer, and the fight is for your integrity as a man as well as your life From www.phoenix5.org/battle.html Less Prostate Cancer Deaths in Hamilton County (OH) in 1999!!! Incidence Deaths (new prostate cancer patients) (http://www.odh.state.oh.us/Data/whare/ Cancer/cancer1.htm) 1996 1997 1998 1999 whites 421 390 385 439 blacks 128 118 105 157 1999: most recent data 2000 data will be available in 2003 1993 1994 1995 1996 1997 1998 1999 Age-adjusted death rate per whites blacks 97 35 95 39 96 24 107 35 103 44 72 43 61 24 Hamilton County’s population: 1990: 866,000; 2000: 845,000 100,000 men -data courtesy of Donna L. Smith, Ohio Dept. of Health 1993 1994 1995 1996 1997 1998 whites 36.2 36.6 37.9 40.4 38.8 26.9 blacks 77.7 86.2 46.7 68.8 83.5 80.2 1999 22.5 46.3 Charles Myers: MD and Prostate Cancer Patient cancer 5 years from now, you can postpone that 12 to 15 years without the use of any drugs. You need to put in place a program that will slow or even prevent late recurrence of this cancer…..It is apparent that the behavior of this cancer is influenced by many things; it’s controlled by your life style as much as by anything the medical profession typically provides. There are now randomized controlled trials that point to a major impact of vitamin E, selenium, and lycopene on the progression of prostate cancer. Additionally, there is now strong laboratory-based evidence to support the impact of vitamin E, selenium, and lycopene on prostate cancer. While each of these trials have some weaknesses, I would point out that neither radical prostatectomy nor radiation therapy have ever been properly compared with no treatment (‘watchful waiting’) and uncertainties remain about the actual impact of these traditional treatments on prostate cancer survival. The point being that comprehensive management of prostate cancer needs to include attention to nutrition and other life-style issues.” The oncologist Dr. Charles Myers has specialized in the treatment of prostate cancer since 1987. In 1999 he was diagnosed with this disease: PSA 20.4, Gleason 7. He describes his own treatment (Lupron, Casodex + Proscar; EBRT + Brachy) in the March 2002 Prostate Forum and in the April 2002 Newsletter of PAACT. Here are some of his words: “..prostate cancer led to a dramatic change in the direction of my medical career and .. it completely altered what I view as the meaning of my life as well as the role I should play in the treatment of cancer patients. Through this experience, I have come to the conclusion that you, as a patient, simply cannot allow the management of your cancer and your life to be limited by the narrow views of the physicians you encounter…I think you would be foolish to depend on surgery or radiation therapy as the sole tool to combat prostate cancer. As you will see, a combination of sensible diet and stress management has already been reported to slow the growth of prostate cancer of 6.5 months to 17.7 months 1). If this is true, it means that if you were destined to develop recurrent prostate 1 ) Saxe GA et al (J Urol 2001 Dec;166(6):2202-7); see also Ornish DM et al. (Urology 2001 Apr;57(4 Suppl 1):200-1) If you use Dr. Walsh’s results for radical prostatectomy, approximately 10% will have died of prostate cancer at 10 years. This appears to be better than no treatment, but not by much ..For this men are asked to undergo major surgery with a measurable risk of impotence and incontinence.” More on watchful waiting from Dr. Myers: “ We do have detailed statistics for the outcome of 15 years watchful waiting 2).. For men between the ages 55 and 59 and Gleason 6, about 19% will have died of prostate cancer despite receiving no treatment. On the other hand, approximately 22% will have died of other causes, predominantly heart disease, diabetes or stroke. 2 ) Johansson JE et al (JAMA1997/2/12;277(6):467-71); see also Choo et al (J Urol 2002;167:1664-1669). 209 patients (stage T1b to T2b N0M0, Gleason score 7 or less and PSA 15 ng./ml. or less) were treated with watchful waiting. The probability of remaining progressionfree was 81% and 67% at 2 and 4 years, respectively; see also Wilt TJ Semin Urol Oncol 2002 20(1):10-7. For men with localized prostate cancer, acceptable treatment options include radical prostatectomy, radiation therapy, cryotherapy, early androgen-suppression therapy, and watchful waiting. These are all considered acceptable options because data do not provide clear-cut evidence for the superiority of any 1 treatment…. Watchful waiting does not remove prostate cancer, may miss an opportunity to cure or delay disease progression, and may lead to increased patient anxiety. However, watchful waiting avoids the harmful side effects of early intervention and does provide palliative therapy if and when symptomatic disease progression occurs. Furthermore, intervention is not necessary in the vast majority of men because most prostate cancers do not cause mortality or serious morbidity. Therefore, quality of life in many men treated with watchful waiting is superior to those treated with early intervention. For the minority of men with prostate cancer likely to cause disability or death, early intervention options may not be effective. Although commonly used in other countries, watchful waiting is rarely recommended in the United States. The opportunity exists to resolve the confusion, close the gaps in knowledge, and enhance prostate cancer care by conducting randomized controlled trials (RCTs). Until these RCTs are completed, physicians can assist patients by providing a balanced presentation of the known risks and potential but unproven benefits of detection and treatment options and incorporating patient preferences into health care decisions. Dr. Myers’ medications: 0.5 mcg calcitriol at bedtime; Fosamax 70 mg once a week; calcium 1000-1500 mg each evening; Proscar 5 mg/day; Dostinex 0.5 mg twice a week. Flomax 0.4 mg each evening; glutamine 2 g with each meal & at bed time; Permixon Saw Palmetto extract, 300 mg twice a day; selenium, 200 mcg a day, gamma/delta tocopherol (vitamin E), 400 IU a day; glucosamine, 100 mg with each meal. Twenty minutes of medication. Diet: 8 oz. tomato juice or 15 mg lycopene twice a day; vegan diet rich in fruits, vegetables, legumes and whole grains. (calcitriol, Proscar, Fosamax, Dostinex and Flomax are prescribed; other medicines are ‘over-the-counter’). 2