Treatment Options & A Mayo 2nd Opinion Questions

Posted by frazer @frazer, Nov 27, 2022

Radical Prostatectomy in 1998 - Gleason 6 - 2000 PSA was rising slowly & prostate bed radiation was performed. PSA dropped to 0.1 and remained there for ~ 10 years, then began to rise .1 every year for ~ 6 yrs. Then PSA rose 0.1 every 6 mos. At 1.24 about 16 mos. ago. Then to 2.18 in September. Recent PET Scan found Pelvis Lymph Nodes: Multiple PSMA avid perirectal and left external iliac lymph node metastases.
Index Lesions: Right perirectal lymph node 6 mm maximum SUV 7.2 & Left superior perirectal node 4 mm maximum SUV 3.2
PET/CT
1. Pelvic lymph node PSMA avid metastases are seen.
2. Osseous metastatic disease in the right sacral ala anteriorly.
Q 1 - Any comments relative to my history and the PET Scan?
Q 2- My Austin Urology Group is having me evaluated as to treatment plan by Radiation Urologist and Urologist who deals with metastatic prostate cancer. I assume I should wait for their TR Plan before getting the second opinion? But, perhaps schedule now?
Q 3 - I will seek a second opinion and am strongly considering Mayo. My urologist keeps telling me this has been a very slow growing cancer. I'm a health centered dentist no longer in practice, and believe diet can play an important part in healing along with the best conventional therapy. Currently reading and modifying diet based on the book How Not to Die by Michael Greger, M.D., FACLM. Also, seeking a consultation with a PhD Clinical nutritionist. Also, looking for a trainer to improve my three times per week exercise. Wondering about the role of genes in therapy.
Q 4 - Is Mayo a good choice for this 2nd opinion and do they take an integrative approach?
Q 5 - Then does it matter whether I go to Mayo Rochester or Mayo Scottsdale? Given the time of year weather-wise from Texas I'd prefer Scottsdale.
Q 6 - Is there a question I should have asked but did not?
Thanks, Bob F - 78 YO in otherwise good health

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

Helen, Volunteer Mentor | @naturegirl5 | Nov 27, 2022

@frazer I can provide an answer to Q4.

Mayo does have Integrative Health although I don't know if they participate in the treatment plan you have outlined. I am a cancer survivor and asked for a referral to Integrative Health at Mayo in Rochester during my radiation treatments. I have been working with Dr. Stacy D'Andre. I know there is an Integrative Health department at the Phoenix clinic also. This is a good question to ask if you decide to pursue a second opinion at Mayo Clinic.

Here is the link to start the process:

http://mayocl.in/1mtmR63

The Prostate Cancer is very active and I'm certain you will receive answers to your questions as well as support.

spryguy | @spryguy | Nov 28, 2022

What journey!
I'm 75, good health, good diet and relatively active.
Oct of 2021 PSA was 11.6. Biopsy in Feb 2022 returned Gleason 4÷3=7
( why did it take so long ?). PSA at this point was 80. After local scans and IMRT I knew I was being under treated . Long story short I requested an appointment at Mayo (Phoenix/Scottsdale) (2hrs drive) . It took some time but saw Dr Bryce and team in July 2022. Biopsy slides were re-read resulting in a diagnosis of "aggressive high risk" PCa. I now have an effective treatment plan w a good prognosis. PSA is currently 0.1 .
Mayo Phoenix is highly recommended by this patient. You questions are welcome. Good luck.

melcanada | @melcanada | Nov 29, 2022

What got your PSA down to 0,1

spryguy | @spryguy | Nov 29, 2022

My (Spryguy) PSA declined to 0.1 due to successful IMRT, LUPRON for 9 mos.(continuing) and most importantly ZYTIGA. My highest PSA was 83.4 (Mar 2022).
After IMRT and LUPRON PSA dropped to 1.2. With the addition of ZYTIGA It went down to .8 (month 1), ..4 (month 2), and .1 (month 3).
I am expecting (hoping) that my blood test in Dec. will be below 0.05. And then <0.01 (undetectable). I view this as just one battle not the war.
I am not brgging but rather promoting these newer therapies to provide a better outlook to all of you guys.
Best of Luck and HAPPY HOLIDAYS.