Hello Newbie here

Hello Mike (Mickey (93394beb6645456c8aa8def1b8aa4557)) 

A warm welcome to the club you didn't want to join (and the Gleason 9 club too!!).

Reading your posts you look to be very organised and know just where you are on your personal journey. I still have my prostate but there are plenty of Community members who have been through surgery and if you have any specific questions do ask - you will get answers.

I understand the most important part of the recovery to be the "Pelvic Floor Exercises" and there is a great app I have used (I had a TURP operation) called the "squeezy app" which can help with these.

It will help us to help you if you add your details to your profile. To do this on your home page click on the chair - to right, then "profile" then "edit". Once you have written something don't forget to save it. Lot's of us have a journey profile and you can read them by clicking on the user name or avatar.

I wish you well on 6 January - do keep us updated with your progress.

Best wishes - Brian.

Thanks Brian 

I've had the squeezy app for some time since I've been on 3 months hormone treatment but now I have the date confirmed, I'd best make sure I'm more continuous about doing it.

Best wishes

Mike

Hi Mike,

I had the operation in August this year and to be honest I didn't find it too bad at all. Yes you do come out with a catheter and in my case I had it in for a month as my Surgeon nicked my bladder during the op so was more comfortable leaving it in a bit longer.

Once it was removed I thankfully passed the wee test and onto the incontinence bit, which again for me wasn't too bad. The odd leak but with doing the pelvic floor exercises regularly every day I soon was leak free. I know that's not the case for everybody but hopefully that will be your outcome too.

I had a funny moment when my Surgeon called me after about a month to ask how things were getting on, re the leaking and then he asked if I had had Sex yet!! In other words was it till working. It made me laugh as that was the last thing on mine and my partners minds considering what I had just gone through. I told him I didn't have a clue!

Hope that helps Mike and wish you all the best for the upcoming op

Kind regards

Lee

Good luck with the op  but interesting  how different hospitals seem to have different treatment options. Did they rule out HT/radiotherapy or give you the choice?

I ask that because I also 62 and have a very similar diagnosis : TB3b (early seminal vesicle involvement) Gleeson 9 but they ruled out surgery from the start - I do have indications of  capsule extension and extensive intraductal element which adds to the risk but otherwise staging is the same . 

No choice but to accept 2 years HT plus radiotherapy in Feb.

Thanks Lee 

It's good to hear people's experiences.  My tumour is quite close to my bladder so I'll be prepared for potential nicks!

Glad things are going well for you. 

Best wishes 

Mike

Hi Patrick

That is interesting.  Surgery has always been on the table and was the route suggested from early on in my diagnosis even pre-biopsy.  For some reason I received an appointment with a Consultant after my MRI.  He didn't know why I was there as they don't usually see patients until after the biopsy!  However he told me what the scan had shown advising me that in all liklihood it would be cancer and therefore an operation was the probable solution. 

After my biopsy I met another Consultant who said the operation was probably the best option for me but referred me to both the RT consultant and surgeon so I could hear from them both to make a decision as to how I wanted to proceed.

I'm not sure whether the capsule extension and extensive intraductal element would affect the options but I suspect it may have done.  I had another MRI last week just to make sure the cancer hasn't spread since my first MRI, if it had, then RT would have been the only option available to me.

The way RT was described to me by the consultant sounded like a much less intrusive option and I was very tempted to go down that route but as three of the four consultants I met suggested the surgery would be best for me, I took that advice.

I hope everything works out for you.

Best wishes 

Mike

I’m sure you know that after surgery you will still have the option of radiotherapy later on if it’s needed, to kill off any microscopic spread found growing later in the seminal vesicles and other local tissue. I don’t think most surgeons will remove the prostate if it has broken out. It was described to me as trying to completely remove a soft-boiled egg, piece by piece. So, although G9, it sounds like your urologist / MDT is confident surgery is an option. But T3b seems to indicate local involvement too? Maybe that’s why likely further intervention later was mentioned?  I was G9 T3a and surgery was ruled out early in the diagnosis, so the only option was the HT / RT route. I found hormone therapy before surgery interesting too, as it doesn’t appear to be a common treatment, so just looked that up…!

Good luck with the op in January Mike and hope your recovery goes well.

Thanks for your message.  My initial MRI showed that the cancer has spread to the surface of my prostate but not into the seminal vesicles or elsewhere which was a relief.  As you suggest, the surgeon said that the idea of surgery was to "debulk" it.  He's assuming there will be microscopic spread due to my high gleason score which will necessitate RT later down the line.  Not sure how long that might take to surface though. 

I've been on HT for 3 months now due to the delay in seeing the Consultant.  I also found the side effects to be interesting!  Hot flushes, particularly at night being one.  I won't be having anymore HT now though due to the close proximity of the date of my surgery. 

I think I was slightly confused by your staging as according to a trusted online source (Macmillian)

T3a – the tumour has spread through the capsule surrounding the prostate.
T3b – the tumour has spread to the seminal vesicles that produce the fluid for semen.

You initially mentioned  you were a T3b, but later that you had no spread to SV which would downstage you to T3a  (probably making surgery more viable).

Anyway that is better for you, good luck with the op!

www.macmillan.org.uk/.../staging-and-grading-of-prostate-cancer