Announcement for Next Meeting

Join us for our
MONTHLY MEETINGS
On a range of topics:

Meeting Announcement

Date: Monday, January 9, 2012
Time: 7:00 P.M
Place: Park behind the church. Enter the building from the right side of the courtyard and take the elevator that is in the Commons to the second floor, turn left and head down the hall straight to the Youth Chapel. All these meetings take place immediately following the presentation.
Speaker: Lorenzo Cohen, PhD.
Topic: Relieving Stress and Enhancing Quality of Life for Those with Prostate Cancer

Survivor Group Meetings: Have questions?  Everyone should... prostate cancer is a complex and confusing disease with several treatment options, all with potential side effects.  Our members have undergone a number of surgery and radiation choices.  Some have selected active surveillance or "watchful waiting".  Others have had the cancer return, and are being treated for advanced prostate cancer with selected drugs and vaccines. Our Hot Line is 713-623-4772.

While we are careful not to provide medical advice, you can benefit from the experiences of our members in our informal group sessions:

• First Timers and Recurrent Cancer - Room B229 
• Treatment Side Effects - Room B227
• Women's Support Group - Room B226

NOTES AND QUOTES

Tex Us TOO, Inc. Information Sharing:

• Our websites www.texustoo.org and www.dadsday5k/org have been setup to be accessed with FaceBook, Twitter and You Tube. You can link to each of these by clicking on their icons at the top banner of our websites. Board member Jerry Boldra and our webmaster, Sherri Ellisor, are going over all social media that can spread our news and announcements in cyberspace.

IMPORTANT NOTICE OF BOARD ELECTION

Election to be held at the January 9, 2012 monthly meeting

Our Bylaws provide for a Board of Directors of not more that 12 and no fewer than 9 positions. We presently have 9 positions filled, of which Position 5 (Joe Piper) and Position 8 (Pete Sterling) are expiring. Each of these directors has expressed a willingness to continue serving for another 3-year term and each has rendered exemplary service to this organization. Your Board recommends that you vote to retain these Directors.

Your Board is also interested in filling the 3 vacant positions with dedicated and interested candidates. If you would like to serve, please contact the chairman of our Nominating Committee, David Turner, at dturner1890@sbcglobal.net or at 713-523-3990, as soon as possible, before the January 2012 meeting.

The Other Side of the Coin. Lately we hear a lot of very valid discussions about the merits of screening for prostate cancer and the range of treatments after diagnosis: Surgery, Radiation in its many forms, Active Surveillance, or No Treatment at All. Your newsletter editor is a member of PCAI (Prostate Cancer Intimacy), one of the many online groups, sponsored by Us TOO International. The common denominator in the PCAI group is Sexual Impotence as a side effect after treatment(s). We reach out with our experiences to those who underwent therapies that left them sexually impaired (and sometimes very angry), for ways to help them overcome sexual impotence and restore intimacy.  

I asked members of that group for permission to include in this newsletter some of their e-mails to PCAI, regarding their personal experiences. Here they are :  

“My husband had DRE every year with his internist from age 44 on. But his internist never did a PSA. Had he, it might have proved to be life saving. At age 49, my husband was diagnosed with a Hydrocele...nothing but a fluid filled cyst on the testicle.
Nothing to get excited about. He was at the urological/oncology department at Columbia Presbyterian. No need to worry. Although his internist did DRE....he was not QUALIFIED TO DO A DRE....upon a PSA at Columbia, which was only done because of benign hydrocele, my husband who thought he was being so thorough do a DRE every year with his primary, had a PSA of 69.5 with no prior family history and an otherwise healthy man. The fact that he had a hydrocele saved his life.... or let me take that back, extended his life. His primary care should be locked up. Doing a DRE on a man whose prostate was 75% tumor, but never felt it and never did a PSA. At Columbia, my husband biopsy was 7/8. He underwent RP with a final biopsy of Gleason 9/10, local spreading to the bladder neck and urethra and a reoccurrence of .30 within six months of surgery. Then radiation. Five years later his is alive and working every day...not without challenges. His psa, staying at .01 for nearly 3 years, is now at .20 and probably rising as we speak. I'm happy with the five years and will cherish everyday beyond right now.... You can't tell me that doing a routine PSA at 40 would not have saved my husband's life...It would have!!! But it wasn't until 4 years later and had he not had a hydrocele he would probably have not survived these past 5 years. PSA should be routine. Talk to me. What you decide after the psa is your decision, but PSa at 40...DEFINITELY.
Barbara , Survivor's wife...For Now”  

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“My Uncle died during active surveillance. Between one biopsy and the other "OOPPSS!!! the cancer metastasized... at age 62 with a PSA of 4.4. I had cancer with a Gleason score of 3+3 = 6. I do not want a Doctor telling me when to have or not have a biopsy..., that should be my decision!!
The same with surgery once cancer is identified; If I want it removed it should be removed.... I think PSA>10 is too high to distinguish between indolent and aggressive. I base this upon a 2010 study from McGill Health Center in Montreal (http://www.nature.com/pcan/journal/v14/n1/full/pcan201036a.html). A better cutoff, if using PSA, would be 4, per my discussion below.
The authors followed a group of men on active surveillance and tried to find a way to predict those more likely to later develop aggressive disease. When they analyzed their data, having a PSA>10 gave you a 17% chance of having an aggressive tumor (defined as Gleason >=7). But having a PSA <=10 gave you a 18% change of an aggressive tumor, so there was no difference using the PSA 10 cutoff. But using PSA 4 was significant with lower than 4 giving you a 5% chance of aggressive vs. >4 giving you a 21% chance of aggressive, and this was statistically significant (see table 3). A low PSA density (PSAd), a level <=.15, was found to predict indolent (Gleason 6) disease. PSA is calculated by dividing PSA by prostate volume (cc). The volume was found by transrectal ultrasound. I've got a few questions and I plan to write the author. If I hear anything, I'll post it.
Russ, Payson, AZ .”  

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“Maybe they need to refine the PSA testing. With a benchmark PSA simply being raised to 10, it might have been too late for me. A PSA of 3.7 at age 50 was enough to warrant a biopsy that unveiled Gleason 7 (3+4) cancer. Maybe age is a factor. And I do like starting at age 40 to establish a baseline. Joel.”  

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“There are a few VERY VOCAL people scare of any type of surgery and there are some that believe a magic wand will make their PCa go away.
Please, use any of my material with or without attribution. If we save a life it is worth it !!! My cancer was also undetectable with DRE
I was at the UsToo conference this past Sep and met a lady with two daughters whose husband had an aggressive type of PCa and he died because the doctor did not want to do a PSA since he was so young.... He never made it to 50 years of age !!
The radiation people all want to support their expensive programs by discrediting the side effects of surgery. They fail to tell you once the radiation side effects take time to show-up they attribute them to "the process of aging" and not the radiation!!! My cancer was also undetectable with DRE. Thanks and may you live long and prosper)” - Jorge

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  “ I certainly don't buy the "wait until PSA reaches 10ng/ml." Many patients produce little PSA despite PC development. On the PSA side, I would still go along with the 2.5ng/ml and above being levels of concern. Then, of course, the DRE is often the determinant of something amiss. In either case, referral to a Urologist for further study/observation should be the rule for family physicians. However, it is at this level of physician that patients should be fully explained what any rise in PSA or results from DRE indicate as well as what a biopsy is intended to determine, then have the patient agree or disagree to a biopsy. Then, should that biopsy – that should extract at least 12 tissue samples from all areas of the prostate - indicate a Gleason Score of 3+3/6 with only two or three tissue samples showing evidence of low percentage/low development PC, Active Surveillance should be encouraged rather than a rush to surgical removal or radiation. But with that encouragement to Active Surveillance, the Urologist should also explain the manner in which he will then monitor the patient's diagnostics and over what time-periods in order to note early-on any sign of change in DRE examination or PSA level, or biopsy change a year or so later, that would indicate progression now requiring a more invasive treatment decision.
As I also noted earlier <http://tinyurl.com/7h59bn8>http://tinyurl.com/7h59bn8, it would behoove all patients to request a second opinion of the biopsy results from a pathologist known to specialize in the recognition of PC pattern under the microscope to confirm the initial diagnosis as well as insure no tertiary evidence of grade 4 or 5 presence. In the event there is such presence, the physician should explain to the patient that much closer monitoring and more frequent diagnostics would be required during Active Surveillance.
The problem in the past is that with any presence of prostate cancer development at the low Gleason Score of 3+3/6 and even only one tissue sample in biopsy showing evidence of as little as 1%, patients were encouraged by Urologists (as well as Radiation Oncologists) to immediate treatment. Active Surveillance was not even brought to patient attention. This has resulted in all the hullabaloo that PSA should no longer be offered to men because any elevation was leading to immediate biopsy and despite how low the cancer was in development, the patient received either surgical removal or radiation when it wasn't warranted - thus the new keyword: "Overtreatment!" The fault for over "overtreatment" has been the fault of Urologists as well as Radiation Oncologists, not the fault of PSA testing. Chuck.”  

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“Dead men tell no tales, and they don't participate in forums like this.  Likewise, anyone totally cured of prostate cancer gets on with his life and has no need of these resources.  Here are some questions I didn't know enough to ask prior to my Da Vinci surgery, along with a few only undergoing surgery has raised:  
1.  What is the annual death rate from prostate cancer?  If treatment is so unnecessary in so many cases, why do so many die?  
2.  What is the percentage of mortality from aggressive PCa, and from nonagressive, so-called "benign" PCa?  
3.  What is the average age at death from PCa?  
4.  How does metastasis work and what is its usual course?  (I don't see many people with metastatic PCa on these forums.)  How is metastasis detected?  All I know at this point is that PCa usually goes to the bones and the end stage is extremely painful.  
5.  During surgery I was found to have prostate cancer on the bladder, unconnected to the cancer in the prostate, which the surgeon said was "unusual."  (I think he means that usually he can see the cancer in the prostate growing toward and onto the bladder.)  Is this metastasis?    
6.  My PSAs since surgery in April have been 0.05 and 0.07.  Uro says if it reaches 0.1 we should do radiation. (The word "cure" no longer passes his lips, as surgery apparently didn't quite do the whole job.) Is this more "unnecessary" treatment?  Presumably it will polish off what's left of my sexual function.  Can one do "watchful waiting" at this point, or is it better to do radiation at some point?  Is there a point of no return here?  Next PSA is in October.    
7.  "Watchful waiting" seems to be better termed "deferred treatment," since few people would just watch and wait until the PCa killed them, without doing anything at all.  Is treatment deferred until it is a matter of life and death more effective than treatment so early that's it's called "unnecessary"?  What's the point of no return?   I was told at diagnosis and also by second opinion that 85% of men who did nothing survived a decade.  That meant 15% didn't.  Did they wait too long? Was their deferred treatment ineffective?  (I don't think this means they died of something else before the decade was out, but maybe I'm wrong about this. Not sure how these statistics are derived.)  This statistic was most influential in my decision to undergo surgery, as my wife has PD and will need her care partner at least that long.    
Woody Allen's recommendation for a long life is, "Refrain from dying." I think that's what all of us here are trying to put into practice.    
To life!  
Bruce, Portland”  

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“Men go abroad to wonder at the height of mountains, the huge waves of the sea, the long course of rivers, the vast compass of the ocean, the circular motion of the stars… but they pass by themselves and don’t even notice.” --Augustine of Hippo.

We welcome suggestions, criticisms, and contributions to this publication. This Is Your Newsletter. Please contact Manny Vazquez at (936) 597-6646, or by E-mail, at manny@consolidated.net WEBSITES: Tex Us TOO www.texustoo.org Us TOO International: www.ustoo.org

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