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The Balancing Act

User
Posted 08 Sep 2024 at 16:05

Hi folks,


Although I'm fit and healthy with no symtoms or health issues, I had a blood test in late 2022. It was the first in many years but it came back with a PSA of 7.97ng/ml. There then followed a a quick MRi which detected "something" and subsequently a biopsy which discovered a small prostrate adenocarcinoma. There is no known problems in my family who generally live to their mid to late 90's. I'm 74, so I voted to continue active surveillance as I am very busy work-wise. A year later I had another PSA test showing an increase to 12ng/ml followed by a MRi and biopsy. To date I have a MRI (T2 N0 M0); Gleason 3+4=7 with 4 in 12 cores and slightly increased PSA at 13ng/mg which is diagnosed as low to intermediate risk.


It is being suggested to begin a short / high intensity radiation treatment (x5). I am interested to learn what the side effects of this could be and whether to hang on for longer if it is slow growing and likely to outlive me??


Any advice?


     


 

User
Posted 08 Sep 2024 at 21:02
To be honest, it is only you who can make the decision, but for many Gleason 7 is the level they feel it is better to take action rather than wait.

The five fraction radiotherapy is a fairly new approach, so there won't be many here who can talk about side effects from personal experience. However if your oncologists don't think you need hormone therapy as well, that stops you suffering some of the most frustrating side effects.

Any radiotherapy is likely to leave you feeling tired, and treating the prostate area is likely to have some impact on urinary continence, erectile function and lower bowel function. (The urinary sphincters and nerves to the penis are attached to the prostate, and the rectum is right next door). Most people find they recover significantly over a few months.
User
Posted 08 Sep 2024 at 22:48

Has surgery option been ruled out?

 '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 09 Sep 2024 at 09:14

You may find some of the points in this (American) video to be of interest


https://www.youtube.com/watch?v=YoTiwJMYqc8&t=6s


In this video Dr Scholz argues that , in addition to factors such as age and the potential effect of treatment on quality of life, another crucial factor is the proportion of Gleason 4 involved. This makes sense because the Gleason Grade is a very crude measure and, in the case of a 3+4, if the grade 4 percentage was 5% then this is pretty close to a 3+3 making active surveillance more attractive. On the other hand, AS would seem much more risky if the grade 4 percentage was 49%.


The problem with this is that I'm not sure whether information on the percentage of the different grades is measured or recorded in the UK. I certainly have no idea what the relative percentages were in my case. Would it be worth asking ?

User
Posted 09 Sep 2024 at 10:15

Originally Posted by: Online Community Member
The problem with this is that I'm not sure whether information on the percentage of the different grades is measured or recorded in the UK. I certainly have no idea what the relative percentages were in my case. Would it be worth asking ?


It's in the biopsy report, and reported for each core analysed.


You can make a subject access request for your medical records from the hospital. This is usually done through the PALS department (or if not, they will know where to ask). They will have a form to fill in.


You could try asking your consultant who might be prepared to print it and give you a copy, even though most hospitals forbid this.

User
Posted 09 Sep 2024 at 11:20

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
The problem with this is that I'm not sure whether information on the percentage of the different grades is measured or recorded in the UK. I certainly have no idea what the relative percentages were in my case. Would it be worth asking ?


It's in the biopsy report, and reported for each core analysed.



I have a full history of my medical records including two pre op and 1 post op biopsy reports. The pre op reports give the number of cores taken from a specified area. The number of those cores containing tumour. The Gleason score and the total percentage of cancer of that group of particular cores. I have no idea what the total percentage of cancer means?


There is no break down of individual cores. 


In the post op histology, it just gives a Gleason score, in my case, 9 (4+5). Plus a Grade group, in my case 5. It then goes on to give an approximate total proportion of prostate infiltrated by tumour, in my case 25%.


None of it makes particularly good reading. 😁

Edited by member 09 Sep 2024 at 11:39  | Reason: Additional text

User
Posted 09 Sep 2024 at 19:55
I can only address part of your original questions.
At age 69, I had the 5-blast RT, on an MR Linac machine- the latter point is significant, as the machine is ( purportedly) more precise in its targeting, so there is less risk of unintended peripheral damage. Given the higher dosage rate, that seems (to me) to be a worthwhile benefit.
In the event, I had an easy run of it- no radiation burn, no tiredness, no urinary issues; in fact no significant side effects other than bowel looseness for a ( very) few days.
It is still a relatively unusual treatment path, (although my onco guy thought it was the future) so there is no large base of statistical data to help you, I'm afraid.

As for the 'treat or wait' part of your question: it's 30% data driven and 70% emotion driven......
Good luck with whatever you decide.
User
Posted 10 Sep 2024 at 17:12

Thanks for that information. I'm having 4 weeks (20 fractions) of Radiotherapy in late October, so it's good to hear from someone who seems to have had relatively few side effects. Good luck with the future and well done. 👍 

User
Posted 15 Sep 2024 at 16:29
Thanks KS25. This info is available in UK. I asked and they sent me pages of the pathology report in which the overall report states,

Overalall malignacy is demonstrated within 7/16 of submitted cores and the tumour is best regarded as Gleason 3+4=7 (est 5-10% pattern , Grade Group 2). Targeted right anterior targeted left and left prostatic biopsies - adenocarcinoma. Right prostatic biopsies - no evidence on neoplasia.

Ardenocarcinoma present: yes,
Type: Aciar,
Gleason 3+4=7 (est 5-10% pattern 4, Grade Group 2)
Percentage of total tissue 5% (5-10% targeted right apical,
<5% targeted right anterior, 0% right, 15% targeted left, <5% left).
User
Posted 15 Sep 2024 at 17:32

Hi Saracen11


In terms of Gleason score alone that sounds like good news when you consider that you could be Gleason 3+4 with say 45% grade 4, which would be a different story. (As it happens neither my biopsy report nor my post-operative pathology report commented on the percentage of Grade 4 – maybe there are more detailed versions which I have not seen).


Gleason score is, of course, not the only factor to consider but this does suggest that there is no need to rush your decision.


Here is another video from Dr Scholz which considers a couple of case studies, the second of which is not a million miles away from your situation. This raises further points such as whether your highish PSA could be partly due to a large prostate or prostatitis, and whether it would be worth having a PSMA PET scan to be more confident that there is no spread outside the prostate area. These may be matters to discuss with your medical team.


https://www.youtube.com/watch?v=lHVQmhQE0qA


 

Edited by member 15 Sep 2024 at 17:33  | Reason: Not specified

User
Posted 25 Sep 2024 at 16:46
What about lazer treatment?
I notice that nothing seems to be mentioned about it on the forum.
Anyone had any experience of this?

I've been offered 5 blast radiotherapy, after 3 months hormone pills but it is likely to be CT directed as opposed to MRi directed.
Anyway my main concern is the after effects of radiotherapy.
 
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