Center of Excellence questions/recommendations for CA resident

Posted by greg52 @greg52, Feb 23 8:41pm

Recently diagnosed with PC (details below).
Current recommendation is to have the robotic radical prostatectomy.
In my research here, everyone is adamant that you are treated at a "Center of Excellence". Starting my research on this so not even sure what this means yet.
- Are there specific hospitals/treatment centers that have been given this title?
- Is there a recommended "center of excellence" for me here in the Bay Area/Central Valley CA that specializes in prostate cancer evaluation/treatment?
- Am I rolling the dice by just having it done through my health care provider (has performed about 150 robot radical prostatectomies)?
- Is medical insurance less likely to cover or will it cover less if I opt for treatment at a better known/more experienced "center of excellence" facility?

I am younger (53), so maximizing the odds for minimal after effects from treatment is also very important to me.

Thanks so much for your input/help.

A few details of my diagnosis below:
Diagnosis:
1. Left crossing midline to right apex to mid gland peripheral zone lesion
#1 : Prostatic adenocarcinoma. Gleason score 3+3 = 6 (Grade Group 1); in 1 of
1 cores, (4mm, 55%).
2. Left crossing midline to right apex to mid gland peripheral zone lesion
#2 : Prostatic adenocarcinoma. Gleason score 3+3 = 6 (Grade Group 1); in 1 of
3 cores, (1mm, 5%).
3. Left crossing midline to right apex to mid gland peripheral zone lesion
#3 : Prostatic adenocarcinoma. Gleason score 3+3 = 6 (Grade Group 1); in 1 of
2 cores, (2mm, 10%).
4. Left crossing midline to right apex to mid gland peripheral zone lesion
#4 : Benign non-keratinizing squamous mucosa and stroma.
5. Left crossing midline to right apex to mid gland peripheral zone lesion
#5 : Benign stromal tissue.
6. Left lateral base : Benign stromal tissue.
7. Left lateral mid : Prostatic adenocarcinoma. Gleason score 3+3 = 6
(Grade Group 1); in 1 of 3 cores, (2mm, 20%).
8. Left lateral apex : Prostatic adenocarcinoma. Gleason score 3+3 = 6
(Grade Group 1); in 1 of 3 cores, (3mm, 15%).
9. Left medial base : Benign prostatic tissue.
10. Left medial mid : Prostatic adenocarcinoma. Gleason score 3+3 = 6 (Grade
Group 1); in 1 of 4 cores, (5.5mm, 40%).
11. Left medial apex : Prostatic adenocarcinoma. Gleason score 3+3 = 6 (Grade
Group 1); in 1 of 3 cores, (3mm, 25%).
12. Right lateral base : Benign stromal tissue.
13. Right lateral mid : Prostatic adenocarcinoma. Gleason score 3+3 = 6
(Grade Group 1); in 1 of 4 cores, (2.5mm, 10%).
14. Right lateral apex : Benign stromal tissue.
15. Right medial base : Benign stromal tissue.
16. Right medial mid : Prostatic adenocarcinoma. Gleason score 3+4 = 7 (Grade
Group 2); in 1 of 4 cores, (3mm, 25%).
17. Right medial apex : Benign stromal tissue.

ASSESSMENT: 53 year old male with history of no medical issues who has intermediate risk prostate cancer (PSA 8.6, 3+4 = 7 in 8/17 cores, cT1c.
Multiparametric MRI of the prostate from 12/18/2023 showed a prostatic volume of 29.1 cc. No pelvic lymphadenopathy. Mild capsular bulge at the left neurovascular bundle zone. No skeletal lesions.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I think that for a guy your age Robo surgery by a surgeon at an excellent facility who is not too young and not too old but has experience for some years on hundreds of Robo surgery patients is recommended. I am a patient of UCLA at Westwood CA. I am not delighted that I have Gl 9 CR. Stage 3C cancer but I am pleased with my care at UCLA, Nick Donin, MD. I am sure that there is an excellent facility in the San Fran area but I am not aware of an excellent facility between these 2 great cities. I live at channel island beach and I drove 1.5 hours each way for my pre surgery and surgery and follow up care. The traveling is a pain but the quality of care is worth it. I take this cancer very seriously. You might consider the surgery and pre surgery at one place and the standard follow up appointments closer to your home ( still get an excellent physician wherever you get care). Good luck.

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I can also recommend UCSF, which specializes in PC. I also recommend a surgeon with far more than 150 surgeries. There is a big difference in the skill level and results in RP surgeons. Also, a center of excellence such as UCSF (or UCLA if that is closer) can walk you through the treatment options for your specific condition.

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On the topic of "Centers for Excellence," I found this article from the National Library of Medicine helpful in explaining background on the concept. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5516836/

Since it is a self-designation, you could also look for reputable sources that list known centers for excellence. One might be this list from the Prostate Cancer Foundation: https://www.pcf.org/patient-resources/patient-navigation/treatment-centers/

Mayo Clinic in Rochester is providing my husband's advanced (Stage 4) prostate cancer treatment. The concentrated expertise, access to research, interdisciplinary approach, and patient-centered approach are profoundly different. Do your due diligence and select the best, most feasible-to-access center for you. It is worth the effort!

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Greg52, nice question about Centers of Excellence. There is no national standard. The designation comes from various sources. It can come from insurance companies as a cost saving measure, which I find frightening.

More importantly, it sounds as though you've spoken with an oncological surgeon. If you haven't yet you might want to consult with a radiation oncologist and a chemical oncologist. The skilled usually recommend their speciality because they are doing what they believe in. On the other hand you may be thinking what many people think with a cancer diagnosis--get it out of me. If you've decided on surgery then find the best surgeon. I wouldn't risk this surgery with someone less experienced because the area is so sensitive to damage
For the same reason I'd check out radiation before deciding on surgery.
If you can manage, don't consider distance as an obstacle. You can get initial appointments by zoom. UCLA is only several hours from the central valley --Kishan has such a reputation that other ROs recommend him. Percy Lee at Lennar Irvine Cancer Center is another great choice for radiation. Rossi at CA Proton in La Jolla has the most experience with prostate cancer--no surgeries there.
Avoiding surgery, I've no information on surgeons.
Anyone out there with an excellent surgeon in California? We could use some names.

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@hbp

I think that for a guy your age Robo surgery by a surgeon at an excellent facility who is not too young and not too old but has experience for some years on hundreds of Robo surgery patients is recommended. I am a patient of UCLA at Westwood CA. I am not delighted that I have Gl 9 CR. Stage 3C cancer but I am pleased with my care at UCLA, Nick Donin, MD. I am sure that there is an excellent facility in the San Fran area but I am not aware of an excellent facility between these 2 great cities. I live at channel island beach and I drove 1.5 hours each way for my pre surgery and surgery and follow up care. The traveling is a pain but the quality of care is worth it. I take this cancer very seriously. You might consider the surgery and pre surgery at one place and the standard follow up appointments closer to your home ( still get an excellent physician wherever you get care). Good luck.

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Great advice. I chose a local doctor here in the Tulsa area. He claimed to have done hundreds of these operations. I did NOT verify this. My bad.
Today, about 2 years after this operation I am almost a total cripple. Even had a spinal stimulator installed. No real relief.
Good luck. And stay skeptical

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@gently

Greg52, nice question about Centers of Excellence. There is no national standard. The designation comes from various sources. It can come from insurance companies as a cost saving measure, which I find frightening.

More importantly, it sounds as though you've spoken with an oncological surgeon. If you haven't yet you might want to consult with a radiation oncologist and a chemical oncologist. The skilled usually recommend their speciality because they are doing what they believe in. On the other hand you may be thinking what many people think with a cancer diagnosis--get it out of me. If you've decided on surgery then find the best surgeon. I wouldn't risk this surgery with someone less experienced because the area is so sensitive to damage
For the same reason I'd check out radiation before deciding on surgery.
If you can manage, don't consider distance as an obstacle. You can get initial appointments by zoom. UCLA is only several hours from the central valley --Kishan has such a reputation that other ROs recommend him. Percy Lee at Lennar Irvine Cancer Center is another great choice for radiation. Rossi at CA Proton in La Jolla has the most experience with prostate cancer--no surgeries there.
Avoiding surgery, I've no information on surgeons.
Anyone out there with an excellent surgeon in California? We could use some names.

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Dr Lee at UCI claims he has done 6300 RP surgeries. Please check it out. He is doing my Biopsy on March 5th.

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@ava11

Dr Lee at UCI claims he has done 6300 RP surgeries. Please check it out. He is doing my Biopsy on March 5th.

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I should add that I will not be going through surgery. There are several other options now compared to 10 or 15 years ago when surgery was the main option from what I read!

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My surgical result and recovery were excellent at Johns Hopkins Baltimore MD, which is a recognized COE.
You have COEs available in CA and elsewhere as noted.
Surgery reserves radiation treatment for the future if you have recurrence. And unfortunately that can be the result at some time, which may be many years after RP.
Also, I have two friends who are more than 10 yrs postop and doing great.
Please note that many men are also very satisfied with Radiation as primary treatment for PCa.
I have had recurrence and required Salvage Radiation treatment. And I would choose the surgery again.
Personal opinion.
Best to you.

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@michaelcharles

My surgical result and recovery were excellent at Johns Hopkins Baltimore MD, which is a recognized COE.
You have COEs available in CA and elsewhere as noted.
Surgery reserves radiation treatment for the future if you have recurrence. And unfortunately that can be the result at some time, which may be many years after RP.
Also, I have two friends who are more than 10 yrs postop and doing great.
Please note that many men are also very satisfied with Radiation as primary treatment for PCa.
I have had recurrence and required Salvage Radiation treatment. And I would choose the surgery again.
Personal opinion.
Best to you.

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Get a second opinion for sure, maybe even a third or fourth. This is a huge decision and education is key. My husband has been recently diagnosed and we are seeking a third opinion (really the first was not really an opinion) at Mayo in Arizona. We also frequently visit PCRI (prostate cancer research institute - non profit) on line. They seem to be a wealth of information. I agree tho, a surgeon with only 150 surgeries under his belt I would probably steer clear of. Just my opinion. Good luck to you!

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Shop around and meet with surgeon's and get a sense of their bedside manner. There are many professionals out there with experience, but you need to go with someone that you trust from a gut instinct.

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