Anyone with UCSF experience? Treatment advice?

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Rdlesstrav'ld
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/19/2007 8:54 AM (GMT -7)   
Had a second opinion from UCSF/Dr. Peter Carroll. Also had a  second ultrasound done there, which showed a slight "bulge" which seemingly opens up the possibility of extracapsular extension. This possibility narrows my treatment options, with Dr. Carroll recommending open RP. Does anyone have any experience with UCSF/Carroll, or any treatment advice? Details follow. Thanks.
 
Age 54, PSA 5.8, Gleason 6 (3+3), biopsy done on 8/20/07, showed right lobe negative, left 20% to 60% discontinuous, T1c, have had 2nd confirming pathology done. Tumor appears to be "focal" rather than "diffuse." sad

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8122
   Posted 9/19/2007 2:39 PM (GMT -7)   
I did not end up using Dr. Carroll, but his reputation is one of the top five in the country. I chose a guy with similar background and the results were great. I do know two people who used Dr. Carroll and they have had great results. i did not want to be laid up and chose the robotic procedure over open and that was the only reason I did not go to Dr. Carroll.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


bluebird
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   Posted 9/28/2007 9:03 PM (GMT -7)   

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IdahoSurvivor
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Date Joined Aug 2007
Total Posts : 1015
   Posted 9/28/2007 10:09 PM (GMT -7)   
Hi Rdlesstrav'ld,
I'd like to welcome you as well to the forum!  Please, make yourself at home with kind friends who are here to listen and to help in ways for which they are able.
You mentioned that Dr. Carroll was your second opinon.  In you don't mind, was the recommendation from the first doctor?
Kind regards,

"Idaho" ~ Barry

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA 0.04 (undetectable) 9/11/2007


Rdlesstrav'ld
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 10/6/2007 6:48 AM (GMT -7)   
The first doctor, who is my local urologist (and who also performs non-robotic RP's), suggested (who would have guessed?) a non-robotic radical prostatectomy. I've recently had some additional testing done, along with additional consults, and have decided on seed implants with one of the Seattle Prostate Institute doctors. I'm scheduled for mid-November.The most recent studies  appear to show 5-to-10 year "apples-to-apples" results at least as good if not better than RP in terms of cure rates, with potency retention rates for men in my age/risk category (54, T2a, Gleason 6 (3+3), PSA 5.8) at 92-to-98% at the seven year mark (August 2007, Mount Sinai Medical, for low-dose brachytherapy only). I realize that this procedure, like all the others, carries certain risks, but it seems to me like my best current alternative. I'm trying to get in to see Dr. Rossi at Loma Linda to evaluate Proton Therapy, but despite repeated calls (I'm on the cancellation list), can't seem to get moved up from January 2008 (!). I have found this forum very helpful in trying to figure out a treatment plan, and in dealing with the emotional/spiritual journey that always seems to defy anyone's planning.

bluebird
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   Posted 10/6/2007 7:22 AM (GMT -7)   
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April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 10/6/2007 5:19 PM (GMT -7)   

Is there a particular reason you want to see Dr Rossi at Loma Linda??  We found that there wasn't any difference in the doctors there except in personality - they all are good and all use the same protocol for treatment. 

Dutch 


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


Rdlesstrav'ld
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 10/10/2007 9:42 AM (GMT -7)   
Rossi's name kept on recurring on boards and in books, but your point is well-taken; given seeing someone else, and at least being able to evaluate the treatment, or holding out for Rossi, and never seeing anyone before my scheduled brachytherapy, the obvious choice is to see someone other than Rossi. I'm going to see if that makes a difference, and thanks for the suggestion.

Rdlesstrav'ld
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 10/10/2007 10:51 AM (GMT -7)   
So I took Dutch's advice, and opened up my Loma Linda consults to any doctor available. It turns out that all them, like Rossi, are booked through December, with the first available openings in January! My paperwork was submitted on 9/14! I've been to a few of the national "names" in both RP and brachytherapy for consults, and I had to wait my turn in line like everyone else to see them, but neither was anything like this. Am I doing something wrong? I've been on their cancellation list for weeks (I'm within driving distance). I know that others here have spoken glowingly about their Loma Linda experience, but a wait of four months for just a consult has me wondering about the rest of their program.

Diagnosed August 2007, age 54, PSA 5.8, Gleason 6 (3+3)
Currently scheduled for brachytherapy in Seattle in mid-November

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 10/10/2007 11:42 AM (GMT -7)   

I'm sure it doesn't say anything about the rest of their program - it is excellent.  What it says is that proton is becoming very popular as an option to surgery and is also being used for surgery salvage.  Also, being the place where the largest number of prostate cancers are treated, alot of men are willing to travel in order to go there, so they are coming from all over the country.  I can't think of any other suggestions except what you are doing - open to all doctors, on waiting list for cancellation and maybe a call weekly might shake something up.  Good luck.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


Motelmat
Regular Member


Date Joined Nov 2006
Total Posts : 50
   Posted 10/10/2007 3:24 PM (GMT -7)   
Rdlesstrav'ld
hello, To answer your question about UCSF, I had my DaVinci done at the SF VA and they also use Dr. Carroll and I checked out the whole department and they use the same people at SFVA as they have at UCSF.  I used Dr. Christopher Kane at VA (he is also at UCSF) and I was very happy.  Had it done Feb 8, 2007.  I chose the surgery rather than the seeds as I just wanted the cancer out of my body and I found there were more problems 10 years down the line with the seeds than the surgery.  I am a little older, 67 now and think I will live another 30 years.
 
Let me know if you have any other questions about them.

PSA 6.6, , biopsies On October 26, 06 with 5 positive and less than 30% cancer in any of them. Gleason 3+3.

Da Vinci surgery Feb 8, 2007 at SF VA hospital. 

Home 2/9/07, Catheter out 2/16/07,

biopsies after surgery Gleason 3 + 4, T2

(waiting for all of the other pathology info)

Minimum leakage, up to urinate twice a night.

The prostate surgery agravated a hernia on my right side I did not nkow I had, surgery for that on 2-27-07 and the pain and discomfort from that was much worst than the prostate surgery.


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 10/10/2007 9:33 PM (GMT -7)   
Rdlesstrav'ld,

Having just completed 44 treatments at Loma Linda on the 28th of September, I know of several issues that could be influencing your ability to get a faster track for consult.

One is that they are not accepting any patients currently for Gantry 1, as they are to start performing a major upgrade in November to that treatment room with the installation of a new robotic Proton delivery system developed in conjunction with NASA. This will cut setup time in half, allow them to have 10 times the current precision in delivery and will allow them for the first time to treat not only locally metastatic tumors of the prostate but also cancers of the lung and some other organs. Lung cancers had previously been untreatable with Protons because the movement of the torso while breathing made it impossible to deliver an accurate conformal dose. This computer assisted arm will be able to track the target area while the patient breathes normally. Eventually all 3 gantries and the fixed beam room will be upgraded. The rad oncology staff is excited because this is the first real upgrade since the facility started treating patients 17 years ago.

Another issue is that they are actively recruiting several new doctors. I know that my attending Dr. Luu is or has left to take a job with the radiation medicine department at Stanford University. Evidently the idea of working with the linear accelerator there was too much to resist. The remaining docs probably have pretty full slates and schedules. Also around the holidays it tends to become congested as there will be interruptions for Thanksgiving and Christmas, so some choose to wait till after the 1st of the year.

If you have your heart set on Protons, Loma Linda is the place to go, regardless of the wait. Our numbers are almost identical I see, including age so if you would like to chat my email below my forum name is active. Drop me a line and I would be glad to call you at your convenience to answer any questions you may have about the process. I see you are coming to Seattle for seeds or do you already live in Puget Sound? If so we are neighbors as I live in the area myself.

Hope some of this helps and hope to hear from you if you are interested.

John


54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C.  After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and started treatment at Loma Linda on 7/26/07. Completed treatment 44 on 9/28/07. 0 treatments remain. Side Effects remain minimal. 1st PSA scheduled for end of Jan. 08.


Rdlesstrav'ld
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 10/11/2007 7:27 AM (GMT -7)   
Thank you all for your responses - they have been very helpful. I'm waiting for the call from Loma Linda, but if it does not come, will probably go ahead with my scheduled brachytherapy. John, thank you especially for your offer - I will be contacting you to find out why you chose protons over seeds. Right now, have to help get the kids off to school...

54, PSA 5.8 (waiting for retest results), T2a, Gleason 6 (3 +3), six cores, right side negative, left side, 20%, 35%, 50-60% discontinuous, normal sized prostate, brachytherapy scheduled for mid-November
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