Very worried not sleeping

Hi all hope your all doing well,

Had my biopsy results 

Gleeson score of 4+3 psa density 0.15 psa 7. 7

Pet scan next Friday which I'm dreading. 

I'm 56 and and reading up on treatments I'd prefer the Beam radiotherapy and hormone treatment as I have a overactive bladder but is it most likely the urology specialists will recommended surgery as I'm under 60 ?

Peter

Edited by member 15 Nov 2024 at 16:32  | Reason: Not specified

Be careful with the vacuum, some blokes have got 'stuck' and ended up in A&E!

Joking apart, I guess most of us, due to anxiety issues, have had difficulty sleeping. It is also common to blame every ache and pain on the cancer. Good luck with your scan on Friday. 👍

Edited by member 17 Nov 2024 at 12:34  | Reason: Typo

To reinforce what someone else said once I got to see the surgeon it seemed things were really moving. Diagnosis can seem to drag on when you know you've got it and want to get on with it. So when I got the operation date I was like a boy going to a cup final, which I did at the age of 15 although they lost after being in the lead, couldn't wait and looking forward to it. So this might be the worst bit before it moves up.

I suspected you'd want RT. The good thing being you can have hormones quickly, if they offer them. I'd want them. You could probably start now even if just to ease your mind and especially if it was to take some time before RT.

Hi all

Just found out yesterday from the clinical prostate nurse that 16 of the 30 cells from the biopsy aren't aggressive so hopefully it hasn't spread fingers crossed 🤞

Peter

Edited by member 20 Nov 2024 at 13:22  | Reason: Not specified

A clear bone scan is certainly good news in itself since it means that no metastatic spread to the bones was detected. In my own case it was the first bit of good news that I had in this process and it meant that all options were "still on the table", to use the words of the nurse who gave me the results.

I think, however, that bone scans will increasingly be superseded by PSMA PET scans, which do the job more thoroughly. Since you are having a PET scan soon I expect that the results from that will be regarded as more definitive than the ones from the bone scan, so let's hope that it gives you the same "all clear" message.

Hi Peter

I think I am getting confused between a bone scan, which is what I had, and a "full bone body blood test" which sounds like it may be something different. If so I apologise for any confusion - I do not know whether the full bone body blood test is relevant or not. It remains true that your PSMA PET scan will be the best test for spread.

Best wishes

Kevin

Hi all 

Had the PET scan yesterday not as long as I thought half an hour wait before drinking water 10 minutes scan time and 10 minutes wait after so the radiotherapy could look at scan,

Just wondering how most urology departments let you know the results by phone or face to face ? Bloody dreading the results  

Peter

Hi Peter, 

I'm waiting for my biopsy results, I had it on Tuesday the 19th so they're due in any time. 

I know they said they ring me, but like you I didn't know whether they would tell me the results over the phone.

I rang the department that arranged my biopsy appointment to ask how they do the results and she said they'd ring to tell me the result was ready and arrange to have either a face to face or a phone consultation.  Obviously I asked if phone was good news and face to face was bad but she said no, it's not like that, it's whatever they can offer really. 

So they won't ring and tell me I've got cancer while I'm up a ladder clearing out the guttering lol  

I'm not at all concerned about the results, well, I don't feel concerned. Worrying won't change what is happening and won't help my state of mind. I'm sleeping well, eating well and whilst I will be glad to get the result I'm not dreading it.

I think the word cancer just blows your mind, so many horror stories out there.  I read a post the other day in response to someone who had convinced themselves they had cancer on the basis of a slightly raised PSA test.  The guy said when he was diagnosed with prostate cancer he was so happy and relieved! He had lost friends to pancreatic and brain cancer and in his view at least he had something that was curable. 

Try not to worry about the result or the time it takes, if you have PCa it's not raging through your body like a tornado, it's slowly growing and can be treated. 

I think a lady earlier said waiting is the worst bit, once you get an idea what you are dealing with it gets easier. 

Stay strong and be ready for what may or may not come next.

Mick