Need help from the Vets.

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Tony Crispino
Veteran Member

Date Joined Dec 2006
Total Posts : 8128
   Posted 1/21/2011 1:10 PM (GMT -6)   
Last night at our UsTOO meeting I met a guy who is going through the VA for his care here in Vegas. He is not satisfied with the doctors there. As he told the story he spent 37 minutes with the doctor and the doctor said he has never spent that kind of time with a patient for prostate cancer. I guess high patient volume is a problem. The patient needs to be looking at treatment as his PSA went from 5.9 to 11 in under two months. His biopsy was a G6 in a single core. Sounds like he is missing a great deal of info or he has a UTI or something making the PSA jump.

My question is if you guys have had similar experiences in the VA and is there a patient advocate program at the VA? This question is directed at those treated at the VA.

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

RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog :

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 1/21/2011 1:25 PM (GMT -6)   
I would reccomend going to his local county Veteren's Affairs Office. Every county has at least one. They are there to act as advocates for all VA matters, including disability and health care. I would start there, to get some kind of help or answers.

David in SC
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 marg
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 11/10 Not taking it
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 9/23/10

John T
Veteran Member

Date Joined Nov 2008
Total Posts : 4269
   Posted 1/21/2011 3:38 PM (GMT -6)   
I've been going to the VA for 40 years. They are OK when it comes to regular checkups and physical rehab. There are some VA facilities that have doctors from nearby institutions that provide some surgical services, LA VA uses UCLA doctors and Riverside uses Loma Linda's. Other than regular checkups, small issues and prostethetics I would never use the VA doctors for any major surgery or protocol unless an outside doctor was used. They just aren't that good.
From what I understand the individual you are refering to doesn't have any other medical insurance so he may not have any other options.
It's not a question of patient advocacy as much as it is a system and competency issue. The VA runs just like most other large government agencies, and it will most likely take a number or trips and redos in order to get something right that should have been done correctly the 1st time.
I wish I had a better answer for that patient, but going into it he should realize that he will receive a level of care and doctor skills that are a lot less that those provided by most major medical centers.
Before anyone jumps on me, I recognize that this is my opinion formed by spending 2 months in a VA hospital and 40 years of follow up care.

Veteran Member

Date Joined Dec 2009
Total Posts : 1268
   Posted 1/21/2011 4:55 PM (GMT -6)   
If the guy is retired military he could use his TRICARE coverage and go to non-VA hospitals/doctors.

Michael W
New Member

Date Joined Jan 2011
Total Posts : 5
   Posted 1/24/2011 7:16 AM (GMT -6)   
Thanks for all the replys.
I am not a retired or disabled vet, but do qualify for medical benefits. I have no medical insurance and this limits my options.
I was biopsied 11/24/10 and found out 12/4/10 I was positive on 3 of 12 cores. Gleason was 3,3=6. PSA was 5.91 and 56.5 gram organ weight, with tumor in left lobe only. I am 61 years old. I have received a second patholgy opinion agreeing with the first patholygist report.
On 12/4/10 I got the first urologist's notes which reccommended I needed brachy seeds plus pelvic radiation and possibly andro. These notes contradict what this doc told me when he said, don't do andro. Then, I go meet the chief of urology 12/20/10 for 37 minutes where I'm supposed to discuss which treatment to do: Watchful waiting or brachy seeds or pelvic radiation or RP. In this report he wrote he had never been asked so many questions by a patient. He even typed things in his report I question the legality of.
He quote's a bunch percentages of what might happen for one of these treatments and then tells me it really depends on the individual how well things may turn out. This is like a craps game, but your betting body parts and how well they will function...or not... the rest of your life depending on seeds, radiation, RP or the wait & monitor approach.
I am leaning toward RP if they can do the nerver sparing and I can get a doctor who has done 300 or so of these RP operations. I hear robotic surgery is done well too. One guy says I can go to San Francicso VA for robotic surgery. So far, this sounds like what I want. Having 50 or so pelvic treatments or permanent seeds don't sould attractive. Waiting doesn't sound right either as my PSA has doubled to 10.9 as of a couple days ago.
So, I don't know what option to pick, they all seem to have potential sides greater than upsides.
The $18000 sounded intesting. I'd like to hear more.
Anyone gone outside the U.S.? For better price or better doc?
Michael W

Cajun Jeff
Veteran Member

Date Joined Mar 2009
Total Posts : 4119
   Posted 1/24/2011 9:38 AM (GMT -6)   
Wow what a post Michael. You are right all the procedures have side effects, and every patient has different results. I know some guy that have had RP with no side effects no ED no leaking. On the other hand I know guys that leak terrably and have total ED. In my case no leak at all but ED is an issue but managable.

Best of luck with you decision.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better
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