Newbie - recently diagnosed - waiting - Start here! - Prostate Cancer UK Online Community

User

Posted 05 Feb 2025 at 10:45

Hello All

Have had a high PSA (8.5), MRI and Biopsy done already

6 out of the 7 areas biopsied (is that a word!) found Adenocarcinoma.

Waiting on "top to toe" PSMA PET Scan (no date yet)

Lots of new words to learn and understand

I'm sure everyone has been through similar, TBH I'm crapping myself and the waiting is the worst.

There was talk of Surgery and/or Radiotherapy

Any advice greatly appreciated

User

Posted 05 Feb 2025 at 12:59

Hi Splodge,

Welcome to the forum, you'll find plenty of good advice and support on this site.

Without doubt diagnosis is a difficult time. Do you have any information from your biopsy such as staging and Gleason score? (Mine was T2C 4+3=7) This may help others offer their thoughts.

As for advice, try to avoid googling stuff on the Internet, it can take you to some dark depressing places. Instead, this site has a massive resource of information to read, I'd start there by clicking at the top of the page. Also, you can phone the number and speak to one of the nurses.

By way of reassurance, I was diagnosed over five years ago, I had surgery and radiotherapy and my PSA is now undetectable.

Good luck,

Kev.

Edited by member 05 Feb 2025 at 13:01 | Reason: Added note

User

Posted 05 Feb 2025 at 13:25

Thanks Kev that's good advice, and I'm so pleased you are doing great.

If I'm reading the letter correctly, 5 of the areas are 3+4 and 1 is 3+5

T3b N0 Mx - Involvement in the left seminal vesical

How did you find the surgery, any side effects/issues?

User

Posted 05 Feb 2025 at 13:54

Hi Splodge,

Surgery isn't too bad, I didn't have any real incontinence issues but ED wise, I had a long recovery, several months passed before anything even started working again, it's pretty good now though.

As you're T3b, is surgery still an option? I don't know, so it's worth getting advice on that, maybe from calling the number at the top of the page, or perhaps someone better informed can advise you. I think the PSMA PET scan could decide the next step.

Good luck,

Kev.

User

Posted 05 Feb 2025 at 14:52

Hello Splodge,

I got a similar diagnosis to you at the beginning of 2024, T3b N0 M0 3+4, very early seminal vesical involvement. I was offered the choice of surgery or radiotherapy with hormone therapy. One surgeon recommended surgery, then a second I saw after the first was unavailable after a family emergency said RT! I opted for RT in the end after agonising over the choice lots. Mainly because the second surgeon said he could do surgery, but it wouldn't be nerve sparing and I'd most likely need salvage RT.

I'm happy with my choice so far, completed RT and a session of HDR brachytherapy at the end of 2024.

Just another 18 months to go on hormone therapy! I've faired ok on that luckily, though others have suffered more with the side effects.

I'd say don't rush any decision once all your results are back, prostate cancer is generally slow in progressing. Speak to both surgeons and radiologists. You should also get a recommended route from your MDT. The specialist nurses on the above number are great too.

All the best with what ever route you choose, you're right all the waiting is the worst! I felt much better once I'd made my choice and a plan was in place.

John

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