New here and need recommendations - Prostate Cancer N...

Prostate Cancer Network

5,230 members3,287 posts

New here and need recommendations

IGwt profile image
IGwt
15 Replies

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.

Written by
IGwt profile image
IGwt
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Tall_Allen profile image
Tall_Allen

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 toTall_Allen

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

addicted2cycling profile image
addicted2cycling in reply toIGwt

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 👍👍

IGwt profile image
IGwt in reply toaddicted2cycling

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

Magnus1964 profile image
Magnus1964

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 toMagnus1964

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.

dadzone43 profile image
dadzone43

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 todadzone43

Thanks for the advice and book recommendation.

dadzone43 profile image
dadzone43

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

j-o-h-n profile image
j-o-h-n

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 toj-o-h-n

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

Shooter1 profile image
Shooter1

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....

dentaltwin profile image
dentaltwin

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

IGwt profile image
IGwt in reply todentaltwin

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
DarrylPartner

Please sign up for our newsletter, too malecare.org/prostate-cance...

Not what you're looking for?

You may also like...

Good outcomes and experience with Eastern US SBRT, LDR, HDR centers?

Thank you for this forum and to all of you that are willing to share and post your journey down...
cdj70 profile image

Active surveillance....trending down

Hello all, I'm a new member to the club and also been a "lurker" since the diagnosis of PCa was...
cmaseo profile image

First Post New Here

hello. 75 year old man with radical prostatectomy in December. I had biopsy in August with 2 or...

Newly diagnosed and looking for advice....

I’m a newly diagnosed 64 year old, very good health, prostate volume of 32 cc, strong family...
Hiker64 profile image

New Guy in the Club--Considering Options

Evening All, I'm 60 years old. I had a physical in July, 2018, which revealed 5.7 PSA. (Only...
daBoomer profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.