For those that chose radiation therapy...

HI Tatami

I was on AS for 4 years before going down the RT route so I had plenty of time to think about either surgery or RT.

Major negatives for me on surgery was that it's a major op and arguably potentially more long term side effects afterwards such as ED and urinary issues .

I was still concerned about the RT though but when I look back now don't know what I was worrying about. 5 years on and I am not suffering with any major issues regards the RT.

Only thing to bear in mind: with surgery u can still have RT if the cancer returns but very tricky the other way round.

hope this helps a little, any more questions please ask

Regards

Steve

Steve, thank you for taking the time to respond. 

May I ask what your status was (PSA) at the time you decided to get RT? 4 years on AS is a long time. 

Yes, that was my other concern. I thought it was RT, and then surgery, but you're saying one can have the surgery and RT if needed in the future, but not the other way around? But when you say "if the cancer returns" -- but of course if you've had the surgery, it's not returning to the prostate, right? It's returning to surrounding tissues/organs? 

Thank you , and I indeed may have more questions. I greatly appreciate your response. 

-Dee

When treatment started PSA was about 12, Gleeson 6, reason I started was because tumour getting near edge of gland.

If there were a few cells left in the prostate margins after surgery then it can get things going again at a later stage, don't think that is too common though.

Grundo that is a similar story to mine.  PSA 13 Gleason 7 (3+4) T2 (possibly 3) N0M0.  At MRI Scan it was seen that the tumour was close to the edge of the prostate and bulging into the rectum and therefore T3 disease could not be ruled out as it was feared that microscopic cancer cells could already have escaped from the prostate.  I had HT for 9 months and 20 sessions of RT back in January 2017 and so far PSA is undetectable.  It was explained that the RT would "mop up" any cancer cells that had escaped the prostate. To all intents and purposes it has "cured me".  From the HT I had a little fatigue developed a small midriff bulge and put on a few pounds no more than 5lbs but continued to go to the gym through out all treatment which kept this at a minimal amount and got rid of it all within 9 months of treatment.  I did have hot flushes from the HT but didn't really notice them until I had finished HT and they gradually went away as the HT left my body.  I am pretty sure that by coninuing to exercise as normal helped with all the symptoms and kept them to a minimum and tolerable.  Half way through the RT I had one night where I probably got up to pee a dozen times - it felt like 30 times but that was all during RT and just that one night. Others had varying symptoms from lose bowel movements to constipation as well and a lot more urinary disturbance.  You will be told to report any changes in bowel movements and urinary frequency or difficulties as soon as they occur to your radiologist and the radiologist will medicate you accordingly.  At my cancer centre we had an appointment with the senior radiologist once a week so they could find out if we were having problems we didn't necessarily see as part of the RT.  Most people will find that any side effects - if you get them and not all of us do get them or get them to a lesser degree just got better and went away as the HT and RT worked and left the body.  

You have to remember that not all of us get side effects and of those that do some of us seem to manage better than others - that's an individual thing.  Some get all the side effects possible but only lightly some get a few really bad ones - and so on and so on.  Just tell your nurse, GP, radiotherapist, consultant urologist or oncologist or whoever as soon as any side effect you may get becomes hard to deal with and they can medicate you accordingly.

Hi Tatami 

Like you I found deciding between surgery and RT almost impossible. Also like you I leaned on favour of surgery. Mainly due to not wanting HT & the argument that if surgery fails you can have RT.

My PSA was 39 my Gleason was 3+4=7. I had  32 biopsy samples taken & 100% contained cancer cells. I should also say that one of the reasons I originally went to my GP was besides the usual, I had lost over 2 1/2 stone in a short time without really trying. 

When I saw the surgeon I was all for going ahead with it at the beginning until he said he only did open surgery (he liked to get his hands on it) he wouldn't guarantee nerve saving till he'd got his hands in and finally given my weight loss and my 100% score at the biopsy, despite all scans including a PET not fining anything outside the prostate, he would recommend I had RT after surgery.

I saw two Oncologists the first stressed no matter which of the options I went for I should start HT that day in order to stop the cancer spreading. I later saw the clinical oncologists who convinced me the cancer was curable with RT. So I chose RT. 

I'm now 3/4 way through RT 15 down 5 to go. It's not easy but I have to trust the professionals that they are working on my interest. 

Have I chosen the right option I hope so. If I'd gone for surgery  I would have had it done almost three months ago and all being well would have been well out of post recovery. But if the consultant had his way I'd be pre RT so I think I did the right thing.  One piece of advice if you choose RT don't change your regular diet. I was given a leaflet of things not to eat. As a vegetarian it was everything I eat. I changed my diet and since then have had nothing but bowel problems. Now they are saying I shouldn't have changed my diet. But as it's my only problem it's not too bad I've decided I have to live with it for another week. 

I do think you should be given of things to eat as well not to eat long before you start RT. 

Good luck which ever option. 

Best wishes

Les

Thank you greatly for sharing your story. I deeply appreciate it. 

Hello.

June 18 2018 Had RP, First PSA test after surgery was 0.18 and climbing to 0.22 very quickly. Went on a fast and brought the PSA down to 0.17 then it started to climb again. Started radiation on 20th December 2018 finished on 6th February 2019. After radiation the PSA was about 0.18. then it dropped to under 0.1 and has sat at that till now. Am due my next PSA test in October.

I had just about beaten the incontinence before the radiation treatment, but after the radiation it did get worse, and after various rounds of treatment think I am making headway. I have ED and getting treatment and now showing some improvement. (The Covid scare did delay my post remedial treatment)

Not sure what my pre surgery PSA was!  I was a Gleason 9 TB3 or T3B, one or the other.

While I have minor problems at the moment , they perhaps can be fixed in time and I think the Surgery then Radiation was the correct route for me..

I chose not to take HT before surgery or radiation because of the time involved, you do not get a true reading till the HT wears off, also I was able to get surgery and then radiation quickly without the delay of HT.

The person who had Surgery before me, very same condition as me, I meet him on occasion, and he has had little or no problems. 

All the Best, you are not alone.