IRE - Gleason 4+4 retuned as 4+5

Hi Billy

Sorry the Nano didn't work out.

I agree with your reluctance for surgery but what about going back to NHS and having Radiotherapy.

regards

Steve

Thanks for the suggestion Steve, I'm seeing a consultant today to discuss that,  my cancer abutts the sphincter and a major concern is to mitigate any damage there, do you have any experience/tips you can pass on?

Cheers

Billy

Ok Billy, hope that all goes well today, let us know.

I had RT by the way and now 15 months on the side effects are mainly all gone.

regards

Steve

Hello,

I had 9 months of hormone treatment and after 6 months 20 rounds of RT using fiducial markers to ensure that the RT was targeted better and avoid collateral damage to bowel and bladder as I already had damage from previous problems to both.  18 months on I am back to normal as far as erectile function and urinary  and bowel function although I have had some slight bowel and bladder problems post RT but these could have been caused by other problems being aggravated by the RT.  I am not and never have been incontinent which was my worst fear as I had lost part of my sphincter muscle due to an infection.  To avoid collateral damage to my bowel, bladder and rectum I first investigated proton beam therapy in Prague.  The difference between this and RT is that the proton beam stops where it is targeted and does not go on to cause damage to surrounding tissue.  Unfortunately I could not have the proton beam therapy because i have a prosthetic hip.  It would have been quite expensive because apart from paying for the treatment you also have to stay in Prague for a month to have the treatment and make a couple of trips before and after - Ryan Air and Easy Jet are quite cheap though. 

Good Luck with whatever you decide to do.

Hi Steve,

Didn’t go that well Steve, went into detail about the downside and recommended prostatectomy at this stage. Said that the prostate is more difficult to remove after radiotherapy so best get it done first.

Glad to hear that you’re on the up and your experience wasn’t that bad. Did you have andro too? If so how was that?

Thanks for your info Freefaller,

How did you manage with the andro?Unfortunately I cant have markers, aopparently they may fall down the hole left by the IRE (where the previous cancer was) so would need an MRI every time I had the RT and its not as precise I don’t think.

Thinking about Prague too but one piece of advice was that the problem with focal therapy on a Gleason is that its too precise and cells can escape too easily, I don’t know if that’s right but everyone here seems to be saying there is no benefit over traditional RT.

Its all bit information overload at the moment.

Good luck to you too mate and let me know about the Ando if you have a mo, I guess it means little or no sex for the period? And does the muscle mass return after?

Cheers

Billy

Hi Billy

No I didn't have Andro.

As far a you are concerned though it could be time for a second opinion. When did you have the Mri that showed the tumour was near the sphincter, did you see the Mri report yourself?

If you have the prostate removed because of the proximity   to the sphincter you will probably have to have RT as well which will increase the possibility of more side effects. If you go down the NHS route you would get another Mri to get a true picture of what is going on now and of course another consultant's view/opinion. Regards Steve

Coped pretty well during the time I was on HT but about 6 months after stopping also had heart problems and was unable to exercise for months so lost more muscle mass.  I managed to exercise right up to and straight after RT (stayed away from home to have my RT as the hospital was 2 + hours drive away) but once the heart problems kicked in although I could do light execise it was like a double whammy to my muscles.  You just can't bulk back up to what you were but you can , even when you have lost muscle exercise to keep what you have left and, depending on age maybe put a little back.  At my age I don't think that is going to happen but it is better than the alternative.  As I always say there are plenty of my ex colleagues who would love to be here now complaining about having prostate cancer.  I went to a memorial service recently for some of my colleagues who died in an air crash 52 years ago just after finishing our training so that was a big reality check for me.  As for having a prostatectomy that was put to me too but my MRI showed that the tumour was pushing out - actually bulging into the rectum so they said if the prostate was removed it was likely that I would be more likely to have bowel and rectum problems - especially as I had pre existing problems. 

All the best

Des

Everyones prostate is near the colon. Get it out fast. It maybe contained within the capsule but cancer cells can still enter the blood stream and embed somwhere else. I had an rp with the robot at the freeman newcastle. It is uncomfortable for a bit. That was five years ago. Very low psa then rt still very low im now on ht. O. O2. When its out you will  get a clear idea of cell migration. 

I had modulated radio therapy at the freeman newcastle. Very accurate computer images used. I was told only 1in 10 men are given it. Ask and you shall recieve. Not many side effects. Just a bit of stress incontinence. After 6years psa undectable.