Treatment for Gleason 9 Localised

User

Posted 22 May 2024 at 15:33

Originally Posted by: Online Community Member

With regards to HT, it's not usual in the UK for men to be given HT if RP is planned, Surgeons say that the HT "fuzzies" the cancer and makes it harder to clearly identify.

Hello mate

Covid restrictions had finished when they put me on Bical for a couple of months prior to my op. I only just avoided a Prostap injection because my cardiologist gave an earlier than expected thumbs up to surgery.

Edited by member 22 May 2024 at 15:40 | Reason: Typo

User

Posted 22 May 2024 at 16:12

I wasn't aware they'd put you on Bical, but you did have a very long wait from diagnosis to surgery, maybe they were still ploughing through the Covid Backlog and continued the policy?

I did specifically ask about HT when I met the Surgeon and he confirmed CT and Bone scan results and he ruled it out if I was considering RP and I don't think there are many on here who had HT prior to RP. I dare say it might mess up PSMA scan results too.

I did start a thread asking about the criteria for starting HT upon diagnosis rather than waiting for all the scan results and the patients decision on treatment as it does seem to vary regionally.

Edited by member 22 May 2024 at 16:20 | Reason: Not specified

User

Posted 22 May 2024 at 17:09

Originally Posted by: Online Community Member

I wasn't aware they'd put you on Bical, but you did have a very long wait from diagnosis to surgery, maybe they were still ploughing through the Covid Backlog and continued the policy?

I was first diagnosed in Dec 2020, Gleason 6 (3+3), only two out of 15 cores, T2a, with reasonable safety margins. I was advised to have AS, and that made sense to me. However, due to a strong family history, the consultant, even during Covid restrictions, recommended a 6 month follow up. I was never informed of this follow up recommendation, otherwise I'd have pushed for it when it was due.

They just left me on 3 month PSA check ups which didn't significantly change, always between 5 and 7. They forgot about the 6 month follow up MRI.

22 months later they realised the follow up had been missed and put me in for a follow up MRI which revealed significant disease progression, T3a. This lead to a follow up biopsy. Gleason 8 (4+4) capsule breached!

It was only then, that I sought my medical records, which revealed a comedy of errors. Including that my disease, although low grade and low volume was always in both lobes, yet was never recorded as T2c, and that that follow MRI had been accidentally not been booked.

Knowing what I know now, I believe the first TRUS biopsy didn't reveal the true aggressive nature of my disease, and it was allowed to progress virtually unmonitored.

I was just lucky, that by badgering them, it made them realise I needed a follow up MRI. If I'd not had that, I suspect I may have now been incurable.

It's frightening, really frightening.

Weirdly, despite my AS being one big c*ck up, I still believe it is a very good option, so long as those chosing it, are probably monitored. I wasn't.

In relation to them prescribing HT, I believe that was to stem disease progression, whilst they deemed whether surgery was suitable for me. The only other reference to HT was that it may have been the reason why my Gleason was raised to 9 (4+5) post op. I've never understood the reasoning behind that one?

Edited by member 22 May 2024 at 17:46 | Reason: Additional text

User

Posted 22 May 2024 at 18:23

Hi Richard

We saw specialist nurse at Christie last Friday who discussed Brachy v RP but given some urinary issues said RP was the route.
She told us to ring our nurse at Stepping Hill Hospital (I believe is a very good hospital for Urology) and get ball rolling and she would also write to them to say RP is way forward! no mention of HT or a PSMA

I rang secretary today who looked at my husbands details and said surgery not til at least JuLy due to holidays etc but when I said give the consultants letters to Christie and our GP saying Very High Risk not just high risk I argued he should not have to wait. She said she may be able to cancel someone off Junes list but only if he passes the pre med and that he has a higher BMI and sleep apnea and she didnt know if he would!
SURELY he should NOT of been referred to Christie to give him choice of therapy IF they deem him not suitable and why only after me chasing was his G9 status only looked at as I said I’m not waiting until JULY as it majorly breaches guidelines and I want to look at other hospitals/private etc! If we had left it we would not of been listed until July
I feel like I am doing the work of the hospital informing the people listing of his aggressive disease and also WHY are they now questioning his fitness!
we have been told to go Friday for pre op and see if they then need a meeting to discuss anaesthesia?
All the time this hopefully T2 G9 could worsen!
just gutted at it all 😞

Is it standard to get a PSMA scan before RP for G9?

thanks

User

Posted 22 May 2024 at 19:28

Originally Posted by: Online Community Member

nowhere near outer prostate

No inditcation of SV or node invasion

Margot,

These are the positive things to concentrate on.

My cancer, although ultimately as aggressive as your husbands, was never as well contained within the prostate as his, yet it still took nearly three years to breach the capsule. I know how frustrated and anxious you must be feeling but it would appear that a delay shouldn't be a problem.

In the meantime, although you shouldn't have to, keep pushing for the necessary steps to be taken to ensure surgery. Unbelievably, as the patient I had to organise liaison between anaesthetists, cardiology, urology and oncology to finally get approval for my operation.

Edited by member 22 May 2024 at 19:32 | Reason: Typo

User

Posted 22 May 2024 at 19:41

Thank you Adrian

it is reassuring to hear what you are saying.
I don’t like the feeling that I’m having to check that the hospital is upto speed and pushing but if I have to I will

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