Support group meeting that went well.

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/21/2011 11:47 PM (GMT -6)   
Perhaps different from Compilers meeting tonight, I held our meeting for UsTOO Las Vegas and we had a terrific speaker. Because of all the hype last month Dr. Vogelzang put the presentation down and addressed the doctor that had reused needle guides for prostate cancer biopsies. He came back this month and delivered another great presentation. I usually don't like running guest speakers back to back but since Nick was unable to commit to another third Thursday in 2011 I made the exception and he was there.

Here are some highlight comments:
1> "50% of all doctors are below average". He made the comment on how doctors fail to stay current with new data. In fact he told the group that I, and many in the room, were more current than most doctors because we do continuing education every month. Some doctors don't do it at all.
2> "1 in 48 is wrong and the impression transfers risk to prostate cancer patients unduly." This was in response to ERSPC findings in 2008 as reported in the New England Journal of Medicine that at the time reported that only 1 in 48 lives will be saved by screening. That study at the time had a median follow up of 9.2 years. Nick pointed out to the group that the ERSPC followed up with 12 years median in February and the actual number may be 1 in 24. Or even less with time. As Nick said 10 year is way too short for prostate cancer studies...(LOL No he was not my influence...as everyone knows I have taken that position and it has been my mantra). BTW we discussed it here already...
3> "In 2008 29,000 men died of prostate cancer and 10% found out in the same year" Someone asked how many found out about their illness and they were determined to be terminal. Here's the reply "10% of men find out that they are dying of prostate cancer. 90% were screened in some way and were fighting the disease for years. This means that very few men die of prostate cancer fast. And those that did neglected to be tested until symptoms were showing". Interesting because Sweden does not screen for prostate cancer and they have the highest mortality rates with the disease.
4>"I wasn't asking you what you thought ~ I was telling you to do it". Actually I said that. Here's the question. "What does a 40-45 year old man tell a doctor who downplays a PSA and DRE" to get a baseline PSA test. Nick said that the doctor is going by guidelines that have either aged or are still denying the value of a baseline test. He said get another doctor. I said to tell him what I quoted...

I spoke for 45 minutes because Dr. V. needed me to until he could get there. I presented the "Levels of Evidence" for clinical trials and studies. I used the USPSTF guidelines along with sample studies in each category.

All in all it went very well.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6888
   Posted 4/22/2011 7:45 AM (GMT -6)   
Sounds like you have a good pool of presenters. And yes, with multiple support groups, I am getting as much or more continuing education on PCa as I do in my work environment.
 
Thanks for these notes - good reinforcement.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/22/2011 7:47 AM (GMT -6)   
my brother in law should go by #4. His doc refused to do the PSA ( he's 40 ).

Re #1, I'm sure that is true. But I am also sure there is a difference between a regular uro that addresses all urological issues for males and females and surgeons/radiologists who specialize only in PCa. If my assumption is correct, it further points out the need to go to someone who is among the best in the field and someone who specializes in this field alone.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 4/22/2011 9:21 AM (GMT -6)   
Sounds like good advice. The quote that 50% of doctors are below average is an absolute truth. by defination 50% have to be below average and 50% above average. By education we can bring the average up and reduce the tails of the distrubution curve; but we will always have 50% below the average. I have always belived the key was to identify the doctors in the top 10% not the average.
JT
66 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/22/2011 9:23 AM (GMT -6)   
good info there tony, thanks
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 4/22/2011 10:16 AM (GMT -6)   
I think I will go to the next local support group meeting. I haven't been to one yet,but I think it's time to go!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/22/2011 11:19 AM (GMT -6)   
John T
Nick said the same thing but we all pretty much agree here. Get the best doctor you can find because it matters at every level you need them. If 50% are below average and you want a top notch guy, the hunt could take a while. He also spoke highly of Duke Bahn's commitment to biopsy. He said he is a valuable resource for many men. This was a reference that not all men need to be CDU biopsied. Most get enough information from a TRUS biopsy that making a trip to see him isn't necessary. But his ability to detect cancer where others do not is impressive.

If anyone get's a chance to see him speak you should go. He is always a key presenter at major AUA, ASTRO, and ASCO events. Very in tune with top research trials and studies. I asked him for help on getting a pathologist to come and break down the pathology options and key points. He said he will talk to his good friend also from the University of Chicago where Dr. V was the cancer center medical director and professor ~ David Bostwick...I didn't know they were in the same shop. I met Bostwick in San Francisco and it does not surprise me. They seem cut from a similar mold. Very nice, outgoing and very sharp.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/22/2011 12:10 PM (GMT -6)   
davidg,
Your friend and another gentleman in our group had a similar experience with the request to get a baseline test. Here is a perfect example that the ACS screening stance guidelines are going to continue to be problematic. These docs are not "having a conversation" about screening they are making the decision. This decision belongs to the patient not the medical community.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino
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