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Prostate Cancer Network

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New here and need recommendations

IGwt profile image

Hello, new here, I am 68 years old in otherwise very good health and live in North East Florida. I was diagnosed last July with Gleason 6, Stage T1c, Grade 1. An MRI guided biopsy showed 8 of 16 cores positive, with 65% involvement of 2 of the cores on one side. All indications are it is still just in the Prostate. Other stats are 33cc volume, Oncotype DX genomic prostate score of 19 or low risk. PSA density at diagnosis was .09 and PSA was 3.0. Next PSA in September was 3.77 and in December it dropped to 1.49. This PSA drop was after a complete diet change, doctor was not to impressed, but I took it as a win. It may have also lulled me into inaction for awhile. I have spent considerable time reading studies at PubMed, Jama and other websites devoted to our issue. In any event I am coming up on my next PSA, MRI and biopsy. I have spoken to an RO at Terk Oncology in Jacksonville and a surgeon at Adventist Health in Orlando who has done thousands of RP surgeries.

AT this point, both radiation and surgery are still on the table for me. My question involves the fact that I have regrettably not yet talked to any other specialists for second opinions and was hoping some experience here could help with recommendations. I did search old posts, but did not see much about this area. Moffitt in Tampa is the only center recommended by PCF in Florida, although here in Jax we also have Mayo and a branch of MD Anderson. Any experience with these or other centers and doctor recommendations would be greatly appreciated. I like my current Urologist and he has been great to work with, but it is now time to talk to other specialists.

I know that my diagnosis is problematic enough that I won’t be on surveillance for to long and need to be ready when decision day comes. Although I just joined, this group has already been helpful. Thanks for any assistance you can provide.

15 Replies

I don't see what's problematic about your Dx. You are an excellent candidate for staying on AS.

I can recommend Vipul Patel in Orlando for RP, Debra Freeman in Tampa for SBRT and Matthew Biagioli in Orlando for HDR brachy.

IGwt profile image
IGwt in reply to Tall_Allen

Thanks, Dr. Patel is the one I saw in Orlando so that is comforting. Definitely hope to stay on AS awhile.

Suggest you research Dr. Laurence Klotz. Pretty sure many here and around the World would prefer to be where you are -- r.e. your diagnosis.

Good LUCK 👍👍

Will follow your suggestion on Klotz. Thanks for the good wishes.

At 68 you're entitled to a little AS. I don't see anything to get overly excited about. Enjoy a few years of treatment free life.

IGwt profile image
IGwt in reply to Magnus1964

Thanks for the reply, it is comforting to get reinforcement of my plan to stay on AS assuming things stay similar to now on my next biopsy.

AS, and study Scholz's book on prostate cancer. Good guidance there. It seems to me in following this forum for four years that men on AS succumb to advice from friends to "get that out of you" or succumb to their anxiety over watchful waiting. Why rush into incontinence and impotence??

IGwt profile image
IGwt in reply to dadzone43

Thanks for the advice and book recommendation.

Most welcome. It was the book that rescued me from crazy-lans when I was first diagnosed and had to process so much new information

Active Surveillance............. as if you were watching your wife's extra activities with the pool boy Zapata.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/01/2022 2:11 PM DST

IGwt profile image
IGwt in reply to j-o-h-n

Good way to create perspective with that suggestion. I will be sharp eyed.

Wish I could have been so well at 68 as you are. Now 4 years later, I would probably still be on AS if that were the case... May you have a long and prosperous retirement and enjoy it to the fullest....

If I may ask, what prompted the biopsy with the low PSA?

IGwt profile image
IGwt in reply to dentaltwin

My PSA was steadily around 1.5 and increased to 3.21 in two years. So Dr ordered an MRI which showed lesions on both sides, then the biopsy based on that. I was pushing him also since my brother-in-law had recently had a RP. His PSA at diagnosis was about 2 but his doc felt something and ordered an MRI. He was a 3+4=7. My numbers were not very high but I do have some urination issues that had me going to the Urologist regularly so my PSA was checked regularly.

Darryl profile image
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