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Anxiety and shock as Gleason 7 jumps to 9

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User
Posted 13 Aug 2022 at 23:08

Having come to terms almost with living with a Gleason 7 having been advised low intermediate local I am extremely anxious as I now face a PSMA Scan next week with a sudden advance to Gleason 9 (4+5) following a biopsy in July after HIFU only last December. 

 

I know medicine isn’t a precise science, I work in the field,  but am both shocked and a little annoyed that following 4 mpMRIs and 3 targeted biopsies since 2020 that showing consistently one small Gleason 3+4 (<10% 4) on one side and no positives on a small PIRADS 3 lesion on the other side. With a PSA stable around 5 all along active surveillance was advised as the best option. 

 

Then September 2021 when istated to jump to 6 and by November it was 8 - so they treated the positive lesion with HIFU late December. Pre and a post MRI showed well treated and again the other side no change and still PIRAD 3. 

 

3 months follow up PSA 5 ( I am concerned so high still but no one is alarmed) but 3 months more it’s 6.9! 

I ask again for PSMA scan and told just MRI as probably just inflammation. However MRI does show change in the previous negative side so another biopsy. 

 

Bad news and a somewhat surprised consultant who sats beery unusual but sorry it is now advanced Gleason 9 - so referral to oncologist, repeat PSA 5.9 - immediate daily 150mg bicalutamide and PSMA ordered. 

 

Given my prostate volume was only 28, no BPH or symptoms - I have always thought the PSA was under estimating what was going on. 

 

Of course my fear is that this is an aggressive fast cancer that has spread outside the prostate to nodes or worse small spots of mets elsewhere will be revealed- even if my PSA is around 7 - it’s hard to be reassured when they always under estimated or told it is very unusual. 

User
Posted 14 Aug 2022 at 12:47
J think grit your teeth and read the report - it may be that the G9 is in a different part of your prostate to the PIRADS 3 area that has been biopsied previously?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2022 at 14:15

I have not researched the speed and frequency with which Gleason increases but I know it can happen because my previous biopsies, both TRUS and Transperineal, were all 3+4 whereas this changed following the last Transperineal which preceded my second HIFU to 4+3. I would be surprised, if for example where men had say 5+5, if it had gone straight from there being no cancer to that greatly changed cancer cell without it going through at least some intermediate grade whether found or not by biopsy. Also, previous treatment may have eliminated more of the lower graded cancer cells leaving more of the greater resilient higher graded cells. Additionally, where there is still a Prostate, it is possible for a new tumour(s) to grow which may be more mutated and higher grade gained through heterogeneity.

PSMA scan may help reduce natural concern about spread. It remains then to agree with your consultant how best to deal with the high grade tumour in the Prostate, possibly by radiation (assuming you have not had this previously), to the Prostate with possible HT for a period or Prostatectomy assuming no spread.

Edited by member 14 Aug 2022 at 14:20  | Reason: Not specified

Barry
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User
Posted 14 Aug 2022 at 09:49
Some prostate cancers seem invisible to even the best tracers - that is the risk of opting for focal treatment rather than radical although, with your other medical issues, it was definitely worth a try. Prostate cancer tends not to change Gleason over time so it seems the 4+5 area is completely separate to the 3+4 area that you previously had treated. When you were given the result of the most recent biopsy, did they mention which type of prostate cancer it is?

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

User
Posted 14 Aug 2022 at 10:44

I asked if it was small cell and told no. To be honest I have had a bit of anxiety about asking for a copy of the biopsy report - which is VERY unlike me - but I have always been assured that it wasn’t likely to suddenly change. It just seems odd that 3 biopsies over of the PIRAD3 lesion that is now Gleason 9 were negative and then here we are that lesion is a big problem 

User
Posted 14 Aug 2022 at 12:47
J think grit your teeth and read the report - it may be that the G9 is in a different part of your prostate to the PIRADS 3 area that has been biopsied previously?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2022 at 13:47


yes, I need to grasp the nettle a bit more but I was on top of it all with the advice of here and consultants so I am a little unsure of how accurate things are in my case.

 I hadn’t read the actual report but to quote the letter to my doctor from the consultant urologist

“ it has shown 8mm of Gleason 4 + 5 disease in the right side of the prostate in an area which had previously been biopsied on two occasions. I explained that the MRI scan had shown significant progression on this right side after the HIFU, and the biopsy confirms the pathological change there”

that is the area with no positive biopsies from several cores in two occasions. 

User
Posted 14 Aug 2022 at 14:15

I have not researched the speed and frequency with which Gleason increases but I know it can happen because my previous biopsies, both TRUS and Transperineal, were all 3+4 whereas this changed following the last Transperineal which preceded my second HIFU to 4+3. I would be surprised, if for example where men had say 5+5, if it had gone straight from there being no cancer to that greatly changed cancer cell without it going through at least some intermediate grade whether found or not by biopsy. Also, previous treatment may have eliminated more of the lower graded cancer cells leaving more of the greater resilient higher graded cells. Additionally, where there is still a Prostate, it is possible for a new tumour(s) to grow which may be more mutated and higher grade gained through heterogeneity.

PSMA scan may help reduce natural concern about spread. It remains then to agree with your consultant how best to deal with the high grade tumour in the Prostate, possibly by radiation (assuming you have not had this previously), to the Prostate with possible HT for a period or Prostatectomy assuming no spread.

Edited by member 14 Aug 2022 at 14:20  | Reason: Not specified

Barry
User
Posted 14 Aug 2022 at 15:38

Thanks Barry, indeed the idea that the HIFU did knock out the lower grade tumour was my exact though I expressed when my 3 month post HIFU was still 5 and at research showed at worst it should have been less than 2 at 3 months but they didn’t buy that.  But hey that’s the past I have to move on.

 

 

With my other polio related health conditions with muscle weakness and part time wheelchair user, living with a night breathing machine,  a prostatectomy is out of the question- as my new oncologist put it bluntly - you would die on the table . I know that but I’m pretty tough and am not life limited so sometimes doctors look rather superficially at me at 71 and don’t know, as they are largely ignorant of polio - a long gone (almost!) past pandemic disease. 

 

So yes I’m on HT but only bicalutamide as a mono-therapy as adding the LHRH like Zoladex might impact my muscles too much - and then radiotherapy if when PSA below 1. 

 

That’s the current plan but of course it may change if the PSMA shows nodal involvement or worse more distant spots. 

Edited by member 18 Aug 2022 at 00:28  | Reason: Grammar

 
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