Saw the urologist today - more questions than answers

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mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/16/2009 8:45 PM (GMT -7)   
The urologist talked about the treatment options, not giving me any more information than I could have gotten from other sources. Nothing seemed to be specific to my case. He said if I chose surgery, it would be suspended and the prostate would not be removed if cancer were found in the lymph nodes. I've been told that this is not done anymore. The lymph nodes are checked before surgery. Now I'm worried by the knowledge of the local team. It doesn't sound to me that they are up to date.

Snuffy Myers is about an hour away. The University of Virginia is also there in Charlottesville.

I need advice. How many tries at finding the right doctor for me will my insurance go for? What should I do now?

I was planning on going to Johns Hopkins or Duke for a second opinion but I'm worried that I don't even have a first opinion yet.

califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 1/16/2009 9:01 PM (GMT -7)   

Get a second opinion if you do not feel good about the answers to your questions.

Also, I would go to see Snuffy Myers. I heard him at a seminar in Los Angeles and was very impressed with his knowledge and honesty.


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01
Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 1/16/2009 9:30 PM (GMT -7)   

"It doesn't sound to me that they are up to date."

I agree with you: another aspect is that as Dr Myers outlines in his book, there's strong evidence that men with lymph node involvement do a lot better with radical prostatectomy, with published material by Dr Zincke and Mayo Clinic.

Your inclinication to consult Dr Myers or Johns Hopkins is logical.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/16/2009 10:18 PM (GMT -7)   
I am with that vote as well, Mike,
You have very important medical decisions to make. Don't hesitate to see either of the two if you have the ability to. You want to let there be no room for error, at least as much as possible. Try to get that appointment. You may ask your urologust if it is best to start hormone therapy until you can get in with these guys.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Palyn
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 1/16/2009 11:45 PM (GMT -7)   
My husband had a PSA of 33 and a Gleason 9 this past summer. The urologist did not want to do a prostectomy because of the high probablity of lymph metastasis. The complications of the prostectomy can include incontinence and other issues, and with lymph metastasis, it is thought that removal of the prostate will not benefit the patient. However, my husband wanted the surgery but agreed that if the lymphs showed metastasis then the surgery would be aborted. As it turned out, his lymphs were involved which was confirmed by the pathologist at the time of surgery, and the prostectomy was not done. He was on hormone therapy before he went in for the surgery, and after the surgery he had 40 radiation treatments. He is also on chemo prescribed by the Burzynski Clinic and on numerous supplements prescribed by a naturopath oncologist and continues to be on Lupron and Casodex. I've read pros and cons for the removal of the prostate with lymph metastasis and it seems that it's really up to the patient to decide that course. Our urologist did not recommend its removal and we are okay with that decision.
Fibromyalgia, osteoarthritis, IBS, scoliosis


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/17/2009 2:03 AM (GMT -7)   
Hi ya Mike,
I guess the thinking runs like this. Once the PCa cells have escaped the prostate they will continue to multiply, I assume somewhat like cuttings from a plant. Once the "cuttings", no matter how small are floating about (vascular or lymphatic systems) or sitting either slowing growing or dormant, removal of the prostate is not going to have any effect on them.......they are still there within the body. Removal of the prostate is going to surely remove one source of the PCa cells but as always there is a price to pay. ie. the side effects of prostate removal and perhaps without the compensation of a cure. But, the problem with this mongrel disease is nothing is set in stone and there is always the possibility it is organ confined and removal of the prostate would remove the tumour and thus the disease. Even with local spread there is always the possibility that a cure could be effected by prostate removal together with follow up radiation and ADT. Then again radiation and ADT alone has given many with non-organ confined disease, very long term survival without removal of the gland.
But I think I would like to see a serious attempt made to ascertain if there has been local spread before my doctor set aside prostate removal as futile. I would, like the others members have suggested, want the opinions of a few highly regarded PCa specialists on which to base my decision.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 1/17/2009 2:19:51 AM (GMT-7)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/17/2009 4:26 AM (GMT -7)   
If you have Blue Cross Blue Shield (not the HMO versions) the upper line of insurance and it was actually less than the auto workers package get here in Michigan. Paid for all  "8" my opinions, treatments, and even when I fired docs from other hospitals and had other tests done. ALL PAID....that was the best part of this disease and exceeded my expectations. You rejected looking at my information quickly Mike. On the drugs all LHRH paid (huge expensive stuff price varies upon how much they wish to gouge you)=Paid, casodex  (co-pay like other Rx things). Good insurance is you friend when something like this comes along.

No comment on the rest of this thread, now 'game is on'. Except for mentioned below this.

I am rooting for you by the way, not me. :-)    
 
(notice I was not biased and did not said yes-yes  go see Meyers...hmmmmmm...I did say seek multiple opinions, especially with your stats), he is considered a leading onco-doc especially on PCa...your decision!  Not all onco-docs are PCa onco-docs....there can be a huge difference in knowledge and skill of what they prescribe and do. So for others just because they seek an onco-doc = (good) a PCa onco-doc (especially with track record)= (better).
 
Other onco-docs considered experts on PCa:  Dr. Strum, Dr. Scholz, Dr. Israel Barken, Dr. Sartor, Dr. Leibowitz (different-outspoken). I can get more examples if needed. They exist and some lesser known ones are out there too. Just like there are average surgeons (or less) the same of onco-docs and probably any type doc.
 
Docs I fired(sha-nah-nah-sha-nah-nah-hey-hey-goodbye) while on the journey with good reasons (fyi):  1-uro-doc (original referral from emergency room had total urinary blockage- made many errors, thanks to books and information I recognized them, alittle later than I should have to); 1- radiation doc whom was not upfront with me and actually lied to me twice (verify what is said), 1-onco doc whom was biased in her approach for drug therapy (would not let me get proscar or avodart..when evidence back then  2002 showed better results for high risk patients using ADT3 combo(via abstract, etc.) vs. (ADT2 she wanted to do)-hey if she was that closed minded and I am looking for the 'best possible outcome'-that equals fired. Shows also she didn't know about benefit of ADT3 and the evidence that I found on it via, books, abstracts/internet and other docs I saw.
Oh and didn't hire (so not fired) uro-docs referral to quacky surgeon whom wrote it on paper and handed it to me "curative and 1% chance of incontinence"...he did not pass the smell test. (gone for him too). He is considered a pretty good surgeon here supposedly....sadly enough for the uninformed referred patient  (caveat emptor).

Z-Bob   (7 yr. warrior on PCa) - 'It is like being in a jungle'-words coined by Robert Young (past warrior due his kudos, by us whom live and his website lives for you:    www.phoenix5.org


 

Post Edited (zufus) : 1/17/2009 5:19:35 AM (GMT-7)


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 1/17/2009 6:27 AM (GMT -7)   

Mikee219 -

It does sound like your local team is not up to date.  I live between Charlottesville and Fredericksburg.  My biopsy was done at UVA and my surgery was at Johns Hopkins.  My recommendation is to see Snuffy Myers and get a surgery consultation at Johns Hopkins.  Your goal is to find the best and most experienced doctor regardless of insurance issues.  Having a top notch doctor makes a huge difference in the outcome.

It would be helpful if you had information in your signature line.  Have you had a biopsy? If so, what were the results?

Good luck in your search.
 
-John
Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/17/2009 6:34 AM (GMT -7)   
Thanks, John. Here's the signature...if it works.
PSA - 9

A. Prostate, left base: Prostatic Adenocarcinoma, Gleason grade 4+4=8, involving 2 of 2 cores and 80% of tissue

B. Prostate, left mid: Prostatic Adenocarcinoma, Gleason grade 4+5=9, involving 2 of 2 cores and 70% of tissue

C. Prostate, left apex: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with probable perineural invasion

D. Prostate, right base: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 50% of tissue

E. Prostate, right mid: Prostatic Adenocarcinoma, Gleason grade 5+5=10, involving 2 of 2 cores and 80% of tissue with perineural invasion

F. Prostate, right apex: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue

Bone scan - negative


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 1/17/2009 6:59 AM (GMT -7)   

Mikee219 -

The signature worked.  Even with a biopsy report like yours there is a lot that can be done to slow things down and hopefully stop it in it's tracks.  Your situation is very serious and the sooner you get started on a treatment the better.  TC Las Vegas is very knowledgable and I think his situation is similar to yours.  You would be wise to communicate with him concerning the best way to procede.  It is frightening to be in a fight with prostate cancer but the reality is that you are now in a better position to fight back.  When you find the right doctor and begin your treatment you will begin a journey that will last many, many years.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 1/17/2009 7:52 AM (GMT -7)   
mikee, its fun being in the world of tough choices and multiple opinions. my own dr/surgeon's view at the time was that they still check lymph nodes once the open operation began, if he believed the cancer had spread to any of them, then he would have aborted the operation. and this doctor is considered the best of the best here in South Carolina. i don't think its as much as him being out of date, as it is he is very conservative in his approach. if it's in the lymph nodes or seminal vessels, then the cow is out of the barn anyway. best luck in your search for your treatment.

david in sc
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - Had operation St. Francis - removed blockage, put in Cath #5, suppose to be removed 1/19/9
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 1/17/2009 7:56 AM (GMT -7)   

Hi Mike , i agree with most posts here , it is crucial for a long life after PCA and succesful surgery to chose the right Surgen , seems like yours  is a bit limited ...heer is part of an article of Dr Walsh of John Hopkins lettrs that relate to early diagnosis :

 

"Dr. Stamey infers that nerve-sparing was responsible for the positive surgical margins. That conclusion is not correct. Dr. Epstein, in another publication, analyzed the influence of nerve-sparing on the presence of positive margins in this series of patients. He found that 24 (4.7%) of the patients potentially had positive margins caused by attempts to preserve the neurovascular bundle. "Of these 24 patients 4 had progressive disease after radical prostatectomy. Three of these patients have manifested elevated PSA levels as their only evidence of progression and 1 has a proven local recurrence. These 4 patients represent 0.8% of the total population who underwent radical prostatectomy. The 20 patients without evidence of disease have follow-ups ranging from 3 to 8 years with a mean and median of 5.5 years".

Thus, I am very careful when and where I spare nerves and for this reason nerve sparing rarely interferes with excellent cancer control. Conversely, most patients with positive surgical margins have extensive cancers which cannot be cured with surgery. Fortunately, with the development of PSA for the early diagnosis of prostate cancer, more patients are being detected at an earlier curable stage. In my last 200 consecutive patients, the frequency of positive surgical margins was 12%, similar to the 18% reported by Dr. Stamey in his most recent series. Thus, I believe that Dr. Stamey's comparison was unfair because he compares patients operated on a decade ago when tumors were more advanced than they are today.

if you want to read the full article it in posted on thier site in this link
 
 
 
Good Luck
GB



April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
PSA  still Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 1/17/2009 7:58 AM (GMT -7)   

Mike:

The downside to seeing Dr. Myers is that he doesn't accept insurance, he deals strictly in cash and credit cards.  His people wll give you  the forms to fill out but it is up to you to take care of it. 

I have talked to a couple of men who have gone to see him and the charge seems to be around $1,500 for a second opinion without any extra tests. 

Both of the guys who have done it say it was worth the hassle to see him.

David


 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 
12/05/08-PSA <0.02 Six months after surgery 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 1/17/2009 10:40 AM (GMT -7)   
Hi Mikee,

I had a second opinion from Dr Blute at Mayo clinic. The Mayo is known to prefer surgery as primary even with lymph node involvment. So, it was no surprise when Dr. B recommended surgery with my stats. He also said that I would need to follow up with radiation and hormones. His reason for doing the surgery, even with lymph node involvement, as I recall was to "debulk" the cancer. I.E. remove the primary generator of the cancer cells. As you can see from my signature I did not follow this recommendation. Lots of reasons why: personal analysis, financial, location, and logistics.

Mikee, best of luck to you. It is not an easy decision. I felt like I was (am) walking through a mine field.
Don
Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/17/2009 10:50 AM (GMT -7)   
Hi Don,

I'd like to know more about how you made your decision. My email address is in my profile, if you'd prefer emailing me.

Thanks.

Mike
PSA - 9

A. Prostate, left base: Prostatic Adenocarcinoma, Gleason grade 4+4=8, involving 2 of 2 cores and 80% of tissue

B. Prostate, left mid: Prostatic Adenocarcinoma, Gleason grade 4+5=9, involving 2 of 2 cores and 70% of tissue

C. Prostate, left apex: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with probable perineural invasion

D. Prostate, right base: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 50% of tissue

E. Prostate, right mid: Prostatic Adenocarcinoma, Gleason grade 5+5=10, involving 2 of 2 cores and 80% of tissue with perineural invasion

F. Prostate, right apex: Prostatic Adenocarcinoma, Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue

Bone scan - negative


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 1/17/2009 12:25 PM (GMT -7)   
Hi Mike.  Sorry you have to be here but you are among friends.  I can only give you my experience for what it is worth, but I am just down the road from you in Richmond.  I used Virginia Urology and specifically my surgeon was Dr. Bill Morgan.  He was very straight forward with me, explained my options, and has been doing this for 20 years.  I have been more than satisfied in every respect.  I would be glad to discuss more if you would like any details.  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me

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