Conflicting messages

User

Posted 12 Jun 2025 at 11:05

Morning all, it is a shame that we are all here but what a fantastic source this is for sharing information.

I was given the results of my biopsy 2 days ago, lovely lady who talked me through the results, told me I had positive cancer in 6 of the 17 samples on right side of prostate, all 6 were from the targeted area defined by the MRI.

She said that it was contained within the prostate but had reached the edge of the membrane. She also said that I was at low risk of it spreading quickly, all good I thought (if there is such a thing as all good). When I got home and looked at all the paperwork it shows my MRI results as T3a with a Pirads 5. My Gleason is 3+4 and my CPG is 4. This is where my confusion comes in CPG4 is categorised as High Risk of spreading quickly and could limit my treatment options as far as I can tell.

Today I have had a call to say that the team has decided that I need a PET scan, nothing to worry about, just to give them a clearer view of the situation? I discussed my concerns with the nurse this morning and was told that they didnt believe the cancer had breached the membrane and that I was not at immediate risk of it spreading.

Hasn't exactly put my mind at risk and wondered if others have had the same scan in similar circumstances.

68 in a couple of weeks and otherwise pretty healthy. Thanks for taking the time to read and good luck all.

User

Posted 13 Jun 2025 at 11:55

Many thanks for the replies everyone, all useful info.

Made me feel better about the need for additional scan.

Had a call this morning to arrange meeting for next Monday with the Oncologist, less than a week since given my biopsy results and told then that it would be 6 to 8 weeks to get an appointment so certainly cant complain about the speed the team are working at.

Hope you all continue to complete recovery.

Cheers

Dave

User

Posted 12 Jun 2025 at 22:10

Hi covers

I had a similar diagnosis ,T3a and Gleason 8,my PSA was similar to yours .I had to have a Pet scan and CT scan to confirm that the cancer had not breached the membrane .I think that they tend to err on the cautious side in this area,which is no bad thing.It had not breached and I ended up choosing the surgery route.I am now 20+ plus weeks post op ,The pathology report after the operation downgraded me to Gleason 3+4 and my PSA was <0.025 which was all good news.I remember how difficult it was in the period after the scans ,waiting for the results and praying that the cancer had not spread outside the prostate,many of us on this site know exactly how you must feel.My only advice would be to stay as positive as you can (I know it’s not easy) I hope that you get your scan quickly ,mine was within 1 week , the results took a further 2 weeks and I hope you get a good result so you get some choice in your subsequent treatment .

Good Luck

Swannie

User

Posted 12 Jun 2025 at 22:14

Hi Covers,

The dates have now been corrected 🤦‍♂️😂 thank you 🙏.

Tbh surgery was really taken out of my hands. The surgeon said he’d do it if I insisted but thought the route I’ve gone down was the best option. Effectively I would need RT down the line to be sure there was no micro spread and they didn’t want to do adjuvant RT and RP. What swung it was the option of brachytherapy in my case but not all trusts do this. Not saying I’m loving HT, far from it but overall it hasn’t been as bad as I thought but there are others on here that may/will disagree. For me I’ve had moderate hot flushes, fatigue, some low days and lost a lot of weight /muscle. The worst part for me is a lack of concentration and brain fog which has kept me off work longer than I’d hoped. My wife says she’s used to me not listening anyway 🤷‍♂️.There is a reduced desire but so far ED hasn’t been a problem but am taking 5mg of Tadalafil daily to keep things working.

All the best in your journey. Take care

Stuart

User

Posted 13 Jun 2025 at 05:41

Hi Covers.

I had non nerve sparing RARP over 2 years ago when I was 66 years old. I was T3a, had extraprostatic extension was Gleason 9(4+5), my PSA was 7. Prior to the op I had a couple of scans to check for spread, it is a normal safeguard procedure.

Since the op my PSA has remained undetectable. I had incontinence problems for a few months and still can't get a natural erection but can get one with penile injections.

Apart from the ED issue, I'm pretty much the same as I was before being diagnosed.

Good luck, mate, with whatever treatment you decide to have. 👍

If you are considering surgery I suggest that you view this very informative video.

https://drive.google.com/file/d/1fyYTLZpxnB9HaR7O4xQ5Ff58Pj4Cn6ZB/view

Edited by member 13 Jun 2025 at 06:14 | Reason: Add link

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User

Posted 12 Jun 2025 at 15:05

Hi covers

Sorry you find yourself here but welcome to the group no one wants to be in. Your diagnosis ie reaching the edge of the membrane is quite similar to mine. In terms of Gleason you are lower risk but as it’s t3a (again sounds like only just t3a) it puts you into that group. So probably the lower end of cpg 4.But good news is your Gleason is relatively low so less likely to spread quickly. I’m not sure what the PSA was which again can influence matters.

Wish you all the best going fwd on this journey.

Stuart

User

Posted 12 Jun 2025 at 20:06

Hi Spmcr, thanks for the re.ply

Yes my PSA was 5.3 so also relatively low.

Checked out your profile and seen your journey,(are the dates right or are some of them from 2025?)

How have you found the side effects from the HT? Reading about them has made me think that RP will be my preferred route but interested in others thoughts on HT.

Hope all continues well for you, and thanks again.

User

Posted 12 Jun 2025 at 22:10

Hi covers

Good Luck

Swannie

User

Posted 12 Jun 2025 at 22:14

Hi Covers,

The dates have now been corrected 🤦‍♂️😂 thank you 🙏.

All the best in your journey. Take care

Stuart

User

Posted 13 Jun 2025 at 05:41

Hi Covers.

Since the op my PSA has remained undetectable. I had incontinence problems for a few months and still can't get a natural erection but can get one with penile injections.

Apart from the ED issue, I'm pretty much the same as I was before being diagnosed.

Good luck, mate, with whatever treatment you decide to have. 👍

If you are considering surgery I suggest that you view this very informative video.

https://drive.google.com/file/d/1fyYTLZpxnB9HaR7O4xQ5Ff58Pj4Cn6ZB/view

Edited by member 13 Jun 2025 at 06:14 | Reason: Add link

User

Posted 13 Jun 2025 at 11:55

Many thanks for the replies everyone, all useful info.

Made me feel better about the need for additional scan.

Hope you all continue to complete recovery.

Cheers

Dave

User

Posted 14 Jun 2025 at 15:09

Hi Covers,

My journey may or may not help but here we go.I am beginning to feel like the old man of the club having my Brachytherapy in 2016 after a private medical that the doctor found microscopic blood in my urine sample and sent me for further tests.

I had a psa 2.19 and Gleason 3+4=7 T2 no mo and 5 samples out of 20 positive.I had the choice of robotic surgery or Brachytherapy and took the Brachytherapy route as i felt it was less invasive.

The Brachytherapy operation was swift in and out of hospital in two days no great problems at all, just a hand full of pain killers. I am 9 years on in September and was 79 on the 12 June. If you click on my Avatar and scroll down a lot you can see my journey so far.If you need any other questions answered please ask.

John.

User

Posted 15 Jun 2025 at 13:34

Hi John

Thanks for the input, I have considered this course of treatment but not sure that it will available if it has breached the membrane, shall wait for result of the PET scan for that info.

Did you have to have any hormone therapy with or before your treatment?

I think it is great that you are 'the old man' as it shows the success of the treatment 9 years on.

Thanks again

Dave

User

Posted 15 Jun 2025 at 13:51

Hi Dave,

I had no other treatments just the various MRI scans and radioactive scan to check for spread in the rest of the body. Very Little apart from the standard check ups and i was very lucky to have had no other problems over the last 9 years. Good luck with whatever treatment you choose .

John.

User

Posted 15 Jun 2025 at 22:22

Hi again Dave,

I’m sure each case is different. My case went to a multi disciplinary team and basically they decided that was the best course for me. The brachytherapy was instead of the RP with the EBRT to basically mop up outside the prostate. I couldn’t have the brachytherapy on its own. The HT was again to try and cover any possible spread away from the area. A lot of factors came into it inc age, the need to have RT in the future, Gleason, staging, potential side effects and margins but I was very similar to you, just with a higher Gleason, so I don’t think it’ll rule it out but each of us is different. For me I was on HT 3 months before brachytherapy and EBRT to shrink it as much as possible which makes the RT more effective. I then carry on the HT for a total of 2 years. But you will speak to your urologist and oncologist. There are many who went down the RP route. I did read on here possibly the best advice I’ve heard.Take someone in and let them make notes. Then decide what you feel is the best course for you. As clear as we think our heads may be when we are in this situation everything merges into one and we can hear what we want to hear or here what our brain is telling us (usually worst case). Then talk it over and make the decision.

Wish you best of luck.

Stuart

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