November 2006 Newsletter   #70 (v. 7,11)
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; Facilitators: 8/03: Stan Moczydlowski, 9/03; Steven Plymire, 10/03;Tom Young, 1/04;  Jerry Glenn, 1/04;
Newsletter (400 copies this issue) editors: Kees DeJong & Fran Stanton

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


871-3844 Carol Cappiello

542-4908 Fran Stanton: 1999, PSA 157, GS 8; AD, EBRT+Brachy, AD, keto+HC, Leukine, estradiol patches

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

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

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

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

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

 

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 third Advanced Prostate Cancer Meeting will be held before the Large Meeting, from 5.00 to 6.00 pm
Men with advanced PC, please, come -- bring your spouses/partners

The next Large Group Meeting Will Be Held on Wednesday, October 25th
Women are Very Much Welcome!
6.00
pm
Healthy Pot Luck Meal
We provide turkey breast and tofu turkey.
You come with a libation of your choice and a dish for 6 to 8 people:
appetizer, salad, soup, vegetable, starch, or dessert.
please avoid using any red meat in your potluck dish and minimize the use of egg yolks and dairy fat. Thanks!
7:00 pm
 
Charlotte Pieples:
Medicare Drug Benefit (Medicare D)

who is eligible, how to get the benefit, what are the costs in 2007,
how to compare and choose, how to join a drug plan, and where to get help
Charlotte Pieples, Administrator of Community Resources and Information for the
Council on Aging of Southwestern Ohio (513-721.7670), is a registered nurse

Next Small Discussion Group Meeting -for Men only- will be on
Wednesday, January 10th, 7.00-9.00 pm
 


US TOO, PCNG, and Outreach

      ●Our Large Group had a record attendance (60 persons) in March. Dr. Bracken spoke on Recent Developments in Prostate Cancer Therapy. ●We received the USTOO Spotlight Award as one of the outstanding USTOO chapters in the USA. ●PCNG lost the ‘Small Meeting for Spouses’, but gained the ‘Advanced Prostate Cancer Meeting’. ●We are proud that three of our members: Dick Fencl, Ben Floyd & Bill Stuart were selected as ‘consumer-advocates’ in panels reviewing proposals to the Army’s Prostate Cancer Program. One of the beneficiaries of this program, Dr. Ho (UC), spoke to us last month.
      We are truly blessed with the Wellness Community (WC) as host of our prostate cancer support group. A great place to meet and no charges to PCNG! However, the costs of operating the beautiful Lynn Stern Center of the WC are considerable, and we hope that you’ll keep this in mind when you write a check for a good cause at the end of this year.
       Checks for the WC are for the WC, but you can also ‘earmark’ a check for the PCNG. That money is mainly for the publication of this newsletter. Please indicate that the donation is for PCNG on the memo line of the check, or in a separate letter included with the check.

Have Great Holidays, and a Happy New Year!                                                                 Tom Young

 


Being Blessed with Prostate Cancer

The notion of being blessed with prostate cancer appears strange. How can one be blessed with a disease terminal for about 10 per cent of the men diagnosed with that disease? For men who will die with prostate cancer (90 per cent), the cancer is an inconvenience, and is not easily seen as a blessing. But there is always the uncertainty: will it get worse; will I die of prostate cancer?

The poem below was written by Ric Masten diagnosed with prostate cancer in 1999. He does not call himself a PC ‘survivor’but a PC ‘warrior’ who accepts that he will eventually die of his disease. In this poem, being blessed with prostate cancer, refers to men diagnosed with terminal prostate cancer such as Rick Masten.

AFTER DIAGNOSIS

after diagnosis
we freeze, petrified
ultrasound and biopsy results leaving
us scared stiff, eyes wide, jaw slack

but think about it folks, think about it
we’re born, we live, we die
so what’s different now? not a thing!
except being blessed with a constant reminder
to never let another unexplored moment slip by

my condolences to those
who fall prey to the fatal surprise
the unexpected cardiac arrest
the sudden traffic casualty
forced to depart short of a conclusion
short of the all important good byes.

Ric Masten was diagnosed with prostate cancer in 1999: PSA 80, Gleason Score 8, and various lesions in his pelvic bone. Orchiectomy also in 1999. Hormone-refractory in 2000, and beginning chemotherapy (taxotere) in 2001. Ric is doing extremely well for a patient diagnosed with metastatic prostate cancer eight years ago! He has a great web site; http://www.ric-masten.net/ and in it is “Ric’s Ongoing Prostate Cancer Odyssey”. Many poems!

From his website:
Ric Masten (Carmel, California; June 20, 1929) belongs to the oral tradition of storytellers, folksingers, and other performing artists. He feels he has more in common with medieval troubadours than with most contemporary poets, and he may be right. Masten is an anachronism, a modern-day minstrel who thrives off live, personal exchange in an age of electronic mass communication… He never fails to poke fun at our everyday behavior and at the same time provokes an unexpected reverence for life... He wants his material to be completely accessible to the ear of the casual listener and, in fact, says his favorite audience is made up of people who would normally regard thirty minutes with a poet as cruel and unusual punishment.


Comparison of the Number of Prostate Cancer Studies
in Cincinnati and Seven Other Cities

Citations (titles and abstracts of publications) are stored in 'PubMed', the National Library of Medicine's data base of 16 million citations: http://www.ncbi.nlm.nih.gov/entrez/. PubMed added in the late eighties the address to the name of the first author, and a PubMed search with “prostate cancer and Cincinnati” as search words would list the citations of all publications about prostate cancer with first authors residing in Cincinnati. In the list of co-authors of a citation the first author is the one who did most of the research.

An analysis of prostate cancer citations in seven cities was published in the November 2001 issue (PDF) of our newsletter. There were in that year 1.38 million PubMed citations on cancer and about 2.5% of those were on prostate cancer. Now, 5 years later, there are1.89 million citations on cancer and the percentage of prostate cancer citations is 3.0%, a considerable increase.

The Pubmed search can be a ‘limited’ search, and the limits are now more detailed than they were in 2001. For example, a period can be entered, e.g., 11/01/2005-10/30/2006 (=2006). Only citations about prostate cancer published in that period would be listed.

The PubMed search is not perfect. The computer finds the city if it is the residence of the first author, but also when it is mentioned in the abstract. For example, because prostate cancer treatment with high-intensity focused ultrasound (HIFU) may be done with machines made in Indianapolis, citations referring to the HIFU machinery are included as Indianapolis citations. There are not many of such erroneous citations.

  CVG COL CLE LEX IND PIT DTW Ann Arbor
1992 5 3 6 0 3 1 12 10
1993 2 2 7 2 2 3 33 6
1994 0 1 10 6 0 4 44 10
1995 3 4 13 3 4 6 34 19
1996 3 2 14 5 3 8 28 25
1997 4 5 16 2 3 15 38 35
1998 2 9 18 6 3 9 41 30
1999 1 4 22 4 11 8 46 35
2000 3 6 36 6 10 22 30 43
2001 1 5 34 5 8 18 35 56
2002 4 10 45 7 16 27 24 56
2003 4 15 44 7 15 24 40 43
2004 7 14 45 13 22 37 39 58
2005 6 15 42 15 28 36 39 55
2006 14 22 46 11 21 46 43 65
totals: 59 117 398 92 149 264 526 546


CVG Cincinnati, OH – COL Columbus, OH – CLE Cleveland, OH – LEX Lexington, KY
IND Indianapolis, IN – PIT Pittsburgh, PA – DTW Detroit, MI

In this table are the numbers of citations about prostate cancer during each of the last 15 years. The numbers are best presented as graphs, as was done in November 2001, but space is lacking in this issue of our PCNG newsletter.
Ann Arbor and Detroit are the most productive in prostate cancer citations and Cleveland is number one in Ohio. Prostate cancer research got in high gear in the various cities at different times: Detroit was already going strong in the early 1990s and Ann Arbor looks like a two-stage rocket, accelerating in 1995 and 2001. Cleveland got going in 2000, and Columbus and Indianapolis both in 2002. And Cincinnati? We hope that 2006 will be the year that Cincinnati took off!


Gleason grades ranging from least aggressive (1) to most aggressive (5);
the Gleason score consists of the sum of the two dominant grades

H. Ballentine Carter et al: Detection of life-threatening prostate cancer with prostate-specific antigen velocity during a window of curability. J Natl Cancer Inst. 2006 Nov 1;98(21):1521-7

BACKGROUND:
Prostate-specific antigen (PSA) ...test for prostate cancer, resulting in overdiagnosis for a substantial number of men. The rate at which serum PSA levels change (PSA velocity) may be an important indicator of the presence of life-threatening disease.
METHODS:
PSA velocity was determined in 980 men (856 without prostate cancer, 104 with prostate cancer who were alive or died of another cause, and 20 who died of prostate cancer)
...
RESULTS:
PSA velocity measured 10-15 years before diagnosis (when most men had PSA levels below 4.0 ng/mL) was associated with cancer-specific survival 25 years later; survival was 92% ... among men with PSA velocity of 0.35 ng/mL per year or less and 54% ... among men with PSA velocity above 0.35 ng/mL per year... ...higher relative risk of prostate cancer death..: the rates per 100,000 person-years were 1240 for men with a PSA velocity above 0.35 ng/mL per year and 140 for men with a PSA velocity of 0.35 ng/mL per year or less.
CONCLUSION
:
PSA velocity may help identify men with life-threatening prostate cancer

PSA velocity is the difference between two successive PSA measurements. If they are one year apart, the PSA velocity per year is obvious. If the time period is different, use the PSADT
calculator on our website: it calculates the PSADT and also the PSA velocity per year.


pcngcincinnati.org has 100+ links to other prostate cancer web sites

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