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 live in the Bay area. When I was diagnosed with prostate cancer, I sought many opinions-Stanford, Cal Pacific, Johns Hopkins, Massachusetts General. To quote a Mass General doctor: "We have excellent surgeons but there's no point in traveling to Boston when you have UCSF so close." He was right--UCSF is a center of excellence for prostate cancer if any place deserves that designation. I had an RP with Dr. Peter Carroll and return there regularly for follow up. I strongly suggest you go there for a consultation.

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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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I was diagnosed gleason 3+4 =7 PSA 4.1. At age 60. I decided to wait to do anything after doing much research. As my PSA increased over the next 5 years to 10, Idecided to have the Robotic Prostatectomy. I chose to use Dr. Ahlering at U C Irvine. I did have to pay more by using him, but my health was worth it. Here is a little bit about him:
Dr. Thomas Ahlering is a highly regarded surgeon in Urologic cancers. He received his medical degree at St. Louis University School of Medicine, followed by a residency in urology at the University of Southern California in Los Angeles and a two-year fellowship in urologic oncology under the clinical training of Dr. Donald G. Skinner. Following his training he was the Chief of the Division of Urologic Oncology at the City of Hope (1986-1992) when he was recruited as Chief of the Division of Urology at UC Irvine in 1992-2002. His years of experience in treatment of prostate, bladder, kidney, and testicular cancers has placed him as one of the original America’s Best Doctors since his selection in 1994. He has received local, national, and international recognition for his expertise in urologic oncology, particularly in the development of Robotic radical prostatectomy with the da Vinci robot. He has performed more than 2500 such surgeries, including the first robotic prostatectomy surgeries in Southern California, Denmark, Australia, and Canada.

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Thank you for an excellent recommendation. https://thomasahleringmd.com/meet-dr-ahlering/#:~:text=Specialty%3A%20Urological%20Cancers-,Dr.,the%20clinical%20training%20of%20Dr.
How are you doing post surgery?

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@gently

Thank you for an excellent recommendation. https://thomasahleringmd.com/meet-dr-ahlering/#:~:text=Specialty%3A%20Urological%20Cancers-,Dr.,the%20clinical%20training%20of%20Dr.
How are you doing post surgery?

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To add some additional thoughts for the OP:
-There are many excellent, experienced surgeons who perform robotic prostatectomies...many are at University teaching hospitals .
-You might consider robotic surgery over open surgery. Robotic surgery generally requires a shorter hospital stay, results in lower blood loss and smaller incisions with reduced pain and with equally good or better outcomes.
-You can travel to Mayo, Hopkins, LA, or other areas of California and I'm sure you'll find excellent care. But you are fortunate to have one of the very best institutions for prostate cancer treatment nearby and , all else being equal, it's advantageous to be close to your surgeon for follow up. You really should at least visit UCSF. They are at the cutting edge (pun intended)in this area. They have pioneered new drugs for PC, the PSMA test (an imaging test to pinpoint prostate cancer), the CAPRA score to evaluate prostate cancer risk, and many other discoveries which now have been adopted by other institutions.
-I have met prostate cancer patients at UCSF who traveled thousands of miles just to be treated there.
-UCSF also has a peer support program for patients (any patients-not just UCSF patients) or prospective patients (415-885-3693). You can be referred to an experienced patient who had a similar diagnosis and similar treatment to learn about their experience. I am a counselor in this program and have spoken to many patients about my own experience. There are also support groups where men get together either in person or virtually to exchange information. There are several in the Bay area.
-Just my additional 2 cents!
Good luck!

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I also endorse UCSF as a center of excellence.

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@brownsf

I live in the Bay area. When I was diagnosed with prostate cancer, I sought many opinions-Stanford, Cal Pacific, Johns Hopkins, Massachusetts General. To quote a Mass General doctor: "We have excellent surgeons but there's no point in traveling to Boston when you have UCSF so close." He was right--UCSF is a center of excellence for prostate cancer if any place deserves that designation. I had an RP with Dr. Peter Carroll and return there regularly for follow up. I strongly suggest you go there for a consultation.

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Hi, My husband had Dr. Peter Carroll do his surgery as well. Just wondering about your 'regular follow up'. Since the removal of his catheter there have been no follow up appts. Only PSA tests. They have never suggested he come in for anything. TYIA

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I assume it's actually good news...that your husband's PSA remains undetectable and there was no need for further treatment. My PSA began a slow increase after surgery and eventually reached the detectable level (0.2) . This happens about 30% of the time. I had additional testing followed by hormones and 37 radiation treatments. I had multiple consultations with Dr. Carroll during this time to discuss treatment options, referrals to Radiologists, Oncologists and other issues.

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@tom86

Hi, My husband had Dr. Peter Carroll do his surgery as well. Just wondering about your 'regular follow up'. Since the removal of his catheter there have been no follow up appts. Only PSA tests. They have never suggested he come in for anything. TYIA

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Follow ups wouldn't be with the surgical oncologist unless there were a need for retreatment. You might want to follow with an oncologist for help with any side effects. I have heard that physical therapy and/or medications can be helpful. Echoing brownsf good news that your husband's PSA hasn't alerted the need for appointments.

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Anyone have there cancer treated at university, California San Francisco? UCSF

I met with a radiation oncologist at UCSF and he is recommending SBRT with a total of 38 Gy radiation over just for treatments

I am Gleason 3+4. Localized prostate cancer. So he is not recommending any additional treatment. No brachytherapy boost or hormone treatment

Total dose radiation seems low to me. I hear that something closer to 50 Gy is more curative

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@jarjlb2

Anyone have there cancer treated at university, California San Francisco? UCSF

I met with a radiation oncologist at UCSF and he is recommending SBRT with a total of 38 Gy radiation over just for treatments

I am Gleason 3+4. Localized prostate cancer. So he is not recommending any additional treatment. No brachytherapy boost or hormone treatment

Total dose radiation seems low to me. I hear that something closer to 50 Gy is more curative

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50 GY and over are more likely to damage the urethera. ADT would sensitize the tumor cells to the radiation. Protocol with MRI guided SBRT is 40GY in five treatments. It sounds like you are in very good hands at UCSF. If you haven't had genetic testing for the tumor, that could add guidance. Most are using decipher. But, I think it is good to get second opinions satisfied or not. It is fairly easy with zoom and with the prevalence of Epic and its
access to your records. I can recommend Hoag, City of Hope Lennar, and UCLA for second opinions.
Best wishes

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