What a choice!

It's a truism that the choice between RT or Surgery is very much a personal one. I looked at the potential side effects from surgery and decided I didn't want to live with them so I chose RT.

Unfortunately, having had the treatment in April/May 2016, there is some sign of recurrence as my PSA has risen for 4 months in a row. I am awaiting the results of bone, CT and MRI scans.

Given what I know now, would I have chosen a different treatment path? Well no because recurrence could well have occurred after surgery but that's not really relevant to you Tim.

As far as the RT goes, these were the immediate side effects and they occurred towards the end of the treatment and for a few months afterwards:

1) Rectal urgency. I really didn't feel like leaving the house until I had had at least one bowel movement. This settled down in time.

2) Really intense feelings of fatigue.  I had to have a lie down most days in the afternoon but this got better in time.

As for the longer term effects the main one is a reduction in the amount of ejaculate to little more than a dribble. I still have decent libido, can get erections and orgasms. I think my penis is a bit smaller although when erect I can't tell.

Hope this helps and that somebody who went down the surgical route comes along with their experience. Also the various toolkits available on this site are an invaluable aid.

Edited by member 25 Nov 2019 at 14:47  | Reason: Not specified

My husband  (52) had the nerve sparing robotic.  I was completely not in favor due to the complications that you know of and, of course, the ability of the surgeon.  His gleason was a 7+ also PSA was never high until the last one before the biopsy. His father and uncles (2) all diagnosed with PC in their 60's and all with aggressive form so he opted for the RP.  Doc also told us over and over if you do chemo/radiation/seed therapy, etc they cannot remove the prostate in the future if cancer does return due to scar tissue.  

My husband's surgery went better than I anticipated. The surgeon he has was known to be one of the best in our area.  I was terrified of his incontinence being an issue for him as he is a recovering alcoholic and drinks A LOT of soda/coffee daily.  Indeed it did make it dicey for him for a few weeks.  He is now almost to 6 weeks post op and he has almost no incontinence except for exertions like lifting, etc.  It took 3-4 weeks for him to get to this.  

As we are in the very beginning stages post op that really is all of our story to offer to you.  I understand it is very hard to make a decision as for us because looking at the side effects none of the options seemed like good ones.  Looking back I guess I am thankful he made the decision he did for himself.  Good luck to you, doing research and talking to others is so good at making the proper decision for yourself.

I had my RP (RALP) surgery two weeks ago. I'm feeling better every day and have no regrets. 

All the treatment options terrified me, but I saw nerve sparing surgery as my best way forward. It just so happens that my local hospital has an excellent surgical team.

Best of luck with your decision. 

Edited by member 26 Nov 2019 at 09:47  | Reason: Not specified

If  you have surgery you can have RT  therapy but not the other way round we were told by our surgeon. Worth considering. 

Edited by member 25 Nov 2019 at 19:31  | Reason: Not specified

Hi Tim,

 I have just put a reply under the heading “post opp”.

 I had surgery 4 weeks ago today. I was classified as low risk....Gleason 3 + 4: psa 5.8: MRI and DRE highlighted definite issue. I discussed with surgeon and nursing team “best option” and agreed surgery. Diagnosis confirmed 26/09/19, surgery initially booked for 21/10/19......I moved this back 1 week to 28/10/19.

Presently feeling better than expected but I have already made the mistake of trying to do “too much too soon” and ended up crashed out in bed for a couple of days (not the brightest).

Hindsight.....without question every one I have met providing care has been generous with their time, concern & support. Have I done the right thing? I do not know. At this point feel a strong degree of relief as do my immediate family. However I do feel I entered into a process and I have been “processed”. The outcome is yet to be confirmed. 

I have arrived here in double quick time and I am not yet sure where that is. Looking backwards, I would definitely have taken more time to consider all the options. This would have also helped me reduce my initial panic which was in large part caused by my irrational fear of simply going into hospital. If possible I would discuss how long you are able to take to make your decision i.e. slow the process.

here if needed

Best

   Lynn’s quote above is all too poignant “Life can only be understood looking backwards”

There are very few surgeons who will remove a Prostate that has been radiated because it makes what is already an intricate operation even more difficult and increases the possibility/severity of side effects so only done rarely.

PS Just read further on and found Lyn had covered this too.

Edited by member 26 Nov 2019 at 01:23  | Reason: seen subsequently covered

Thankyou all so much--this sharing helps no end. My problems started in June with urinary frequency and I thought it was a UTI--had a/b s but still had the problem. I suggested to GP that I should have a psa---I knew it was opening a can of worms. psa 6.5. Referred to urology---DRE--'feels benign'. Repeat psa 6.0. I thought 'great'--it's coming down so repeat in ? month--but no straight to biopsy. Gleason 7 [3+4]. Finally saw a surgeon,not a junior registrar--got about 15 minutes to discuss options--decided on active surveillance [ I'm a coward! ]. I was not offered a consultation with an oncologist. 3 month repeat psa 9.6. I will arrange today an appt with oncologist. I feel I have not been given enough information to make an informed decision. Sorry to moan! Tim.

Absolutely Lyn. Indeed I think this should be standard procedure.

Roll on proton beam becoming more mainstream. RT without so much collateral damage. 

Yes I saw those trial results. US and Czech data is more detailed. I know two guys that have been treated at the new facility  in Wales. Both fantastic outcomes but not cheap and rarely covered by insurance. The precision of the pencil beam is impressive and spaceoar protects the bowel if needed. In my view the negative is you still have a prostate with the underlying genetic issues so at best it buys some time I guess otherwise I would have potentially gone down this route.

Oh totally...I should have highlighted I meant pretty much no urinary/potency outages at all. In terms of cancer outcomes, as you said, too early to say thus far. One of the reasons I gave it a miss with five areas. One of the guys had 9 but obviously those are what are termed clinically significant. Long term data just isn’t there yet.

Proton beam is excellent for brain. Friend of mine was given 12 months back in 2008  with deep tumours near the brain stem which were inoperable. She managed to raise the money to have proton beam treatment in Boston and is still about today raising a family

Edited by member 26 Nov 2019 at 22:45  | Reason: Not specified