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Panicking - advice appreciated

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User
Posted 06 Oct 2023 at 16:30

My husband had PSA 3 June 22

PSA 20.15 July 23

bone scan clear

we had a phone call after MDT only information was the MRI showed a suspicious area and biopsy recommended, no pirads or detail given on the suspicious area. I asked if area contained Dr said yes, I asked if enlarged he said moderately 54g

 

at biopsy told PSA was 2!

 

DRE done, dr didn’t say what he found, and husband didn’t ask unfortunately ( not the same Dr that called to suggest biopsy) 

 

prescribed Tamsulosin 

 

today we revived a letter dated 15/9

 

says that PIRADS 5 changes in bilateral peripheral zones.

provisionally T2c No/ T3 N0

I am really worried about this now, I was hoping that it could be BPH or infection albeit no real symptoms but seeing it is suspected T3 and bilateral everything seems much worse and more likely not benign. 

 

I guess I’m looking for hope that all will be well and my husband will have  many more good years. 

Would surgery be available if biopsy shows T3? 

we await the biopsy results for discussion at MDT and the subsequent appointment- which I really hope is face to face. This has been dragging on for almost 2 months now. 

 

User
Posted 07 Oct 2023 at 17:19

I think, under the same circumstances, I would be making the assumption that it is prostate cancer. After all, it affects 12% of men and is one of the most common cancers next to skin cancer. It also one of the most treatable and curable cancers.
Don't get me wrong, I was in exactly the same position as you both were, a year ago. I wanted to hope that it wasn't but knew deep down that it was - the techs might get it wrong on the exact grade, but they are unlikely to be wrong on the cancer/no cancer.
Now, 4 months after my RARP, I can look back on it and understand that my worry level was 100 but the reality was about 25. Yes I had surgery which wasn't nice but wasn't half as bad as I expected and yes I have permanent ED and mild incontinence (which improves week by week) but I can still have a very pleasurable (and non messy) orgasm and we still enjoy the bedroom - just in different ways.
It's no good me saying 'don't panic' because I know you will but please try and be reassured that there are plenty of us who have walked, are walking and will walk the same path and there are plenty of success stories.

And yes, the waiting is the worst part of the whole thing.

Edited by member 07 Oct 2023 at 17:21  | Reason: Not specified

User
Posted 06 Oct 2023 at 23:03
Hi. I was offered surgery with T3N0M0 (Gleason 8 (4/4) so there's every likelihood this will be an available option and to be curative treatment.

Good luck

John

User
Posted 07 Oct 2023 at 07:32

Hi,

I get the impression  it depends on your surgeon whether you will be offered surgery, and in Scotland if there is any sign of spread (eg T3b like myself) you won’t be offered it because they believe there is too much chance of requiring SRT after it.

all the best with your journey.

Derek

User
Posted 07 Oct 2023 at 08:39

With a T3 or even a T3b "curative" treatment is certainly possible. As Derek says, it could be a prostatectomy or RT/HT but either way you've caught it at a stage where treatment can give your husband every chance of living for close to a normal lifespan.

The next bit is going to be mentally tough but weigh up all the advice you're given in relation to what matters most to you and don't hesitate to ask questions of the Drs and specialists.

It's worth having two people present at any consultations you have, partly to get the different perspectives and also because it's hard to remember the important stuff when so many issues crop up, with so many potential answers.

Jules

User
Posted 07 Oct 2023 at 13:42
Sorry that you are in this awful position but the good news is that it has been found and has a very high chance of being cured with a normal life expectancy. It's just a bit of a bugger to get the treatment all sorted, but when it is you will be able to relax and get on with the rest of your lives.

RP should be possible - but if not then RT is the alternative and both have high success rates.

Remember that most men die with prostate cancer, not because of it, and the fact that you now have the diagnosis and the start of treatment is a very positive step.

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User
Posted 06 Oct 2023 at 23:03
Hi. I was offered surgery with T3N0M0 (Gleason 8 (4/4) so there's every likelihood this will be an available option and to be curative treatment.

Good luck

John

User
Posted 07 Oct 2023 at 07:32

Hi,

I get the impression  it depends on your surgeon whether you will be offered surgery, and in Scotland if there is any sign of spread (eg T3b like myself) you won’t be offered it because they believe there is too much chance of requiring SRT after it.

all the best with your journey.

Derek

User
Posted 07 Oct 2023 at 08:39

With a T3 or even a T3b "curative" treatment is certainly possible. As Derek says, it could be a prostatectomy or RT/HT but either way you've caught it at a stage where treatment can give your husband every chance of living for close to a normal lifespan.

The next bit is going to be mentally tough but weigh up all the advice you're given in relation to what matters most to you and don't hesitate to ask questions of the Drs and specialists.

It's worth having two people present at any consultations you have, partly to get the different perspectives and also because it's hard to remember the important stuff when so many issues crop up, with so many potential answers.

Jules

User
Posted 07 Oct 2023 at 13:42
Sorry that you are in this awful position but the good news is that it has been found and has a very high chance of being cured with a normal life expectancy. It's just a bit of a bugger to get the treatment all sorted, but when it is you will be able to relax and get on with the rest of your lives.

RP should be possible - but if not then RT is the alternative and both have high success rates.

Remember that most men die with prostate cancer, not because of it, and the fact that you now have the diagnosis and the start of treatment is a very positive step.

User
Posted 07 Oct 2023 at 16:32

Thank you for replying.

The waiting is just so stressful, MRI and bone scan were fairly swift but then waiting results then waiting for biopsy and results from that has been very slow, definitely doesn’t comply with the governments targets and the delay makes me fear spread.

Also, communication is very poor. I hope I find I have confidence in doctor once we have a face to face appointment as so far feel just like a number at the bottom of a very long list. 

I would sooner me be going through this than him. 

I will definitely make notes or record the next appointment especially since the letter we received says we were told things by phone which we definitely were not. seeing the staging has shocked me as I mistakenly believed that would come after biopsy, and until then was hopeful it was BPH.

We will compile a list of questions for when we eventually see consultant. 

can we assume it’s definitely cancer, not infection or enlarged given the  MRI stageing? It’s really confusing as the biopsy results are not yet reviewed.

 

Edited by member 07 Oct 2023 at 16:52  | Reason: Not specified

User
Posted 07 Oct 2023 at 17:19

I think, under the same circumstances, I would be making the assumption that it is prostate cancer. After all, it affects 12% of men and is one of the most common cancers next to skin cancer. It also one of the most treatable and curable cancers.
Don't get me wrong, I was in exactly the same position as you both were, a year ago. I wanted to hope that it wasn't but knew deep down that it was - the techs might get it wrong on the exact grade, but they are unlikely to be wrong on the cancer/no cancer.
Now, 4 months after my RARP, I can look back on it and understand that my worry level was 100 but the reality was about 25. Yes I had surgery which wasn't nice but wasn't half as bad as I expected and yes I have permanent ED and mild incontinence (which improves week by week) but I can still have a very pleasurable (and non messy) orgasm and we still enjoy the bedroom - just in different ways.
It's no good me saying 'don't panic' because I know you will but please try and be reassured that there are plenty of us who have walked, are walking and will walk the same path and there are plenty of success stories.

And yes, the waiting is the worst part of the whole thing.

Edited by member 07 Oct 2023 at 17:21  | Reason: Not specified

 
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