Considering Mayo Clinic

Larry, from your signature, it looks like, you def need some expert advice. So I don't see how you can go wrong with Mayo. If y you can get an appointment with Dr Kwon, he's got a great reputation, and seems like he thinks outside the box when he has to.
Some of our members work with him, I am sure they will chime in soon with some first hand experience and comments. Good luck

Dr. Kwon at Mayo would be my first choice. Dr. Oliver Sartor moved from Tulane to Mayo this year and would also be to good choice. Your situation seems to be fairly far along so it definitely will require some out-of-box approach.

I take it you have not had Pluvicto (PSMA seek & destroy infusions). That is probably the latest treatment option of the last few years.

Have you had Zytiga or Xtandi yet? Lupron does not appear to being doing the job now so adding a different type of drug would seem to be warranted. I have no direct experience but many here do and combinations of drugs have helped.

Post Edited (Mumbo) : 10/29/2023 3:34:32 AM (GMT-8)

It seems that men are in one of two camps: those who put PCa in the rear view mirror and move on, and those who continue to monitor every aspect of the disease. No right answer other than the extremes do not seem to yield the best results for mind and body.

Your situation appears to have been difficult from the start. I know from my experience starting in 2018 that while no cure has been found, diagnostic tools and treatment options have been expanding rapidly and all hope that the magic treatment scheme will be found one of these days for the high risk cases.

Hang in there and get your appointments scheduled. Nothing nicer than Rochester in the winter… (allow extra travel time if weather is suspect at all).

Cyclone-ISU,
With one 5mm spot of cancer now visible only on MRI scans - my doctor in Houston does not want to radiate it?
I ask about a PSMA scan and he told me I don't need PSMA scan because we already know cancer is through out my body? I get a complete work up with scans and labs twice a year in Houston.
I watched Dr Kwon's recent video and I have not started any new treatments since 2016.

can't help but wonder,
Larry E

Larry - How does your doctor know it is throughout your body? Have previous scans showed that or is the 5mm spot the only known recurrence and he is assuming from your PSA? The PSMA scan would quickly tell if the PCa was everywhere. It is not practical to radiate a lot of spots but if there are just a couple then radiation can be very useful.

Sorry to hear you have to wait until Feb but that can be pretty typical to see a specific doctor nowadays. My wife and I went there and were offered earlier times to see other BCa oncologist's but she had a specific doctor recommended so we had to wait a couple of extra weeks. Make sure you get on a cancellation list if you have the ability to travel on short notice as sometimes an opening will pop up but you will only have a short period to make a decision.

The weather in Rochester and MN in general can be nasty that time of year so leave plenty of travel time. We and others I know have gone in Feb and there is a good chance of ice/snow on the roads until DOT catches up. It took use 2+ hours to get there vs. less than 1.5 hours normally from Twin Cities and it is all highway driving.

Oncologist at Mayo had her CT/PET scans and biopsy pathology reviewed before meeting so it was an easy meeting with no surprises. Recommendations were exactly the same as University of MN (oncologists all know each other around here) so she chose to go there rather than deal with the longer drive to Rochester.

Mayo is impressive is some ways but not in the same way that MDA in Houston is. It is in a relatively small town near farm country so really tall buildings and city like atmosphere are not there. The Gonda building is where most of the doctor visits take place and it is large for a small town with parking across the street. There are a number of other Mayo related buildings in town also and normal hotels are all over the place.

Good luck with your insurance company.

I am back from Mayo and after psma scan with labs;

From Dr. Kwon:
"PSMA PET scan shows abnormal radiotracer uptake by the prostate gland with SUV max 44.1 with seminal vesicle involvement. No radiotracer avid metastasis identified. PSMA expression score of 3.


The plan is a MRI in 3 weeks..
for consideration of possible

1) salvage radiation treatment in combination with hormone therapy and androgen pathway receptor inhibitor (abiraterone plus prednisone)

2) salvage prostatectomy with hormone therapy

3) salvage prostatectomy followed by salvage radiation treatment with hormone therapy and androgen pathway receptor inhibitor (abiraterone plus prednisone)

Follow-up with Dr. Kwon after consultation with Rad/Onc and Urology."


When we were leaving I told Dr. Kwon please don't snatch my prostate! Everyone in the room laughed.
Larry E

Post Edited (Larry E) : 3/10/2024 2:42:17 PM (GMT-8)

Larry - Interesting meeting results, the upcoming MRI will complete the investigation short of any physical testing like biopsies so you just wait some more, darn.

I am pretty sure that Dr Kwon would not put surgery on the possible treatment list if there was no merit in it. I am sure the surgeon would respect your wishes and carefully remove the prostate without snatching it.

However, the list may be modified after the MRI so little sense in worrying too much now. Look forward to hearing the results in 3 weeks when the final recommendations are made.

I just passed through Rochester for work, stayed downtown. Some nice restaurants and brewpubs, hopefully you were able to take a break and enjoy life a little?

Hi Cyclone,
I remember in 2016 you told me about Dr Kwon and I tried to get an appointment but it was a 7 month wait. I needed treatment as soon as possible so I got into MD Anderson - now I'm at Mayo in the Kwon clinic. I should find out treatment options in the next month.
Thanks for the advice, fellow teacher Larry