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My journey to diagnosis

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User
Posted 06 Mar 2023 at 11:16

Just had a call from GP surgery to book me in to see GP next week to quote ' as a result of my diagnosis'.  Of course I asked what the diagnosis was as I do not see the urologist until this week Wednesday.  I was told cancer but no more details so I expect to get that on Wednesday at the hospital.

I was doing regular PSA due to father having prostate cancer at age of 73.  He survived for 20 years and the cancer wasn't what got him in the end.

My PSA results have been:

Apr 2015 1.9

Jan 2016 2.4

Oct 2018 2.8

Nov 2021 3.4

Referred for MRI with contrast- PIRADS3, prostate volume 60cc, suspicious lesion of 12mm left central node base but no extracapsular or nodal disease but due to size of prostate no further action until PSA above 9.

May 2022 3.2

Nov 2022 9.9

Referred for 3TMRI - PIRADS3, prostate volume 54cc, suspicious lesion of 9mm in right posterior peripheral zone, but due to severe UTI in July we decided to do a repeat PSA in Feb 2023 as rise might be due to UTI.

Feb 2023 8.95

Referred for TP targeted biopsy - carried out on 20th Feb.

I will ask about Gleason score, Stage, number of cores, treatment options.  Any advice on other things I should be asking about please?  I am a bit confused by the different lesion descriptions and locations from the two MRIs.

I am 62, on Tamsulosin for enlarged prostate.

User
Posted 15 Mar 2023 at 12:03
Update : Gleason6(3+3), T1c, one core out of 18 positive (0.5mm), Put on Active surveillance.
User
Posted 05 Mar 2024 at 09:00

Short update. Had my annual MRI on 10 Feb and PSA on 12th. Nurse called yesterday 11 Mar. PSA is down to 6.15 which is good, but the MRI shows a new 'nodule' in the left transition zone (TZ). Apparently this area wasnt sampled in the biopsy last year. No PIRADS score allocated so going for MDT review next week, not sure why that wasnt done between the MRI and yesterday's call. Nurse is suggesting another biopsy, subject to MDT confirmation. Not looking forward to that again.

Edited by member 05 Mar 2024 at 09:01  | Reason: Not specified

User
Posted 06 Mar 2023 at 14:10

Sorry you found out that way. Hospitals are usually quite careful with a flag in records to say if the patient has been told or not yet, but I guess they wrote to your GP without said flag. My hospital didn't write to my GP until after I'd been told.

Depending on your diagnosis so far (but in most cases anyway) they will probably do a bone scan at least, and possibly some other scans. Until you reach the end of the diagnosis, you won't know what treatment(s) may be appropriate, so there's likely still be some things to be done after your next appointment.

User
Posted 04 Jul 2023 at 21:30
Nov 2022 9.9

Feb 2023 8.95

July 2023 9.6

Nice and stable - particularly as the biopsy & mpMRI were done after the PSA had peaked at 9.9 - I wouldn't be concerned if that was my dad.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2024 at 21:01
That's great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2024 at 21:45

Really pleased for you anyuser.

Good luck for the future.

Derek

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User
Posted 06 Mar 2023 at 14:10

Sorry you found out that way. Hospitals are usually quite careful with a flag in records to say if the patient has been told or not yet, but I guess they wrote to your GP without said flag. My hospital didn't write to my GP until after I'd been told.

Depending on your diagnosis so far (but in most cases anyway) they will probably do a bone scan at least, and possibly some other scans. Until you reach the end of the diagnosis, you won't know what treatment(s) may be appropriate, so there's likely still be some things to be done after your next appointment.

User
Posted 06 Mar 2023 at 15:06
Thanks Andy,

I will make sure not to mention I know already on Wednesday, I dont want anyone to get into trouble.

User
Posted 15 Mar 2023 at 12:03
Update : Gleason6(3+3), T1c, one core out of 18 positive (0.5mm), Put on Active surveillance.
User
Posted 15 Mar 2023 at 19:33
Sounds very similar to me, 21 samples taken at biopsy, only 1 sample with cancer and only 1mm of the sample with 30% pattern 4, been on AS for a year just had my year 2 MRI and feedback from consultant, staying on AS. Make sure you have a clear AS plan, how often you have PSA checked, 3 monthly in year 1 is good, also make sure the AS is being managed by a urologist and expect to have another MRI in a year, good luck
User
Posted 15 Mar 2023 at 20:45
Thanks Juddy

Getting my appointments set up for PSA and MRI now and also have a CNS for any queries.

User
Posted 04 Jul 2023 at 19:38
Latest PSA 9.6 so fairly stable I think. Getting pressure from partner/friends/family to get second opinion from BUPA but not sure myself.
User
Posted 04 Jul 2023 at 21:09

Hi anyuser,

As far as I'm aware, a PSA of 9.6 seems quite high for someone on Active Surveillance, but perhaps other members of this forum who are more knowledgeable than I will offer their opinion.

Take good care of yourself.

Best wishes,

JedSee.

User
Posted 04 Jul 2023 at 21:30
Nov 2022 9.9

Feb 2023 8.95

July 2023 9.6

Nice and stable - particularly as the biopsy & mpMRI were done after the PSA had peaked at 9.9 - I wouldn't be concerned if that was my dad.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jul 2023 at 07:42
Thanks both, next appt is in Sept so will also see what they say then.
User
Posted 05 Jul 2023 at 10:11

PSA is not a very good measure of the severity of prostate cancer as I discovered over 12 years ago. My  PSA was 24 and Gleason score 3+4, 4+3. My tumour hadn't spread, I had prostatectomy over 12 years ago. I am afraid consultants don't always explain which lives patients to search for information as you are doing now. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 05 Jul 2023 at 11:14
I believe that the stable PSA is a good sign. In my case it went from 6.8 (08/21) to 9.6 (investigations started) to 10.3 to 12.1 (05/23) just before the RARP. The 13 core biopsy suggested Gleason 3+4=7 PiRads 4 but after the histology lab did their bit it was 4+5=9 PiRads 5 so it was definitely actively growing and the PSA sort of backs that up.

Keep up the tests to keep an eye on it and here's wishing you the best of luck.

User
Posted 05 Jul 2023 at 12:35

Yes, thanks all.  In Sept I need to find out what a worrying rise in PSA would be.  Its not clear to me if there would be an absolute threshold of say 10 or 15 etc vs a certain rise over time to trigger anything more.

User
Posted 16 Aug 2023 at 19:15
3 monthly test today came back at 6.9 so down from 9.6 in May. So looking good for now, next test and MRI in Feb next year.
User
Posted 05 Mar 2024 at 09:00

Short update. Had my annual MRI on 10 Feb and PSA on 12th. Nurse called yesterday 11 Mar. PSA is down to 6.15 which is good, but the MRI shows a new 'nodule' in the left transition zone (TZ). Apparently this area wasnt sampled in the biopsy last year. No PIRADS score allocated so going for MDT review next week, not sure why that wasnt done between the MRI and yesterday's call. Nurse is suggesting another biopsy, subject to MDT confirmation. Not looking forward to that again.

Edited by member 05 Mar 2024 at 09:01  | Reason: Not specified

User
Posted 14 Mar 2024 at 16:24
No concerns from last MRI after MDT review so just on 6 monthly PSA tests now. No MRIs needed in future unless PSA changes.
User
Posted 14 Mar 2024 at 21:01
That's great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2024 at 21:45

Really pleased for you anyuser.

Good luck for the future.

Derek

User
Posted 15 Mar 2024 at 18:11
Thank you all.
 
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