HT/RT vs surgery?

User

Posted 22 Aug 2016 at 14:50

Hello all,

I am new here, having just recently started this game of snakes and ladders. I have localised cancer diagnosed a couple of days ago, and so now I have to choose a treatment route, either hormones and Xrays or surgery.

I would be interested in any advice and experience of these options. I have read through a thread on HT/RT side effects, and another thread by Toad I think, so I don't ask all of those people to repeat themselves. I don't have to decide right away, but as of today, I would rather avoid the surgery route with its incontinence and other surgical risks. The side effects of the hormone-Xray treatment seem much less severe - am I wrong about this?

I think I can deal with hot flushes and low moods (I have these already...) but I don't fancy catheters, bags, nappies, a different bed, etc etc.

And furthermore, if the radiotherapy is not completely effective, the future always brings improved treatments which can come on line, whereas with surgery you don't benefit from better techniques in a few years time.

I am in London and would have to go from Wimbledon to the Royal Marsden for treatment, which is a 35 minute tube journey. i know the journey well but I do appreciate that loose bowels could be a real challenge, not many loos on the Tube.

I would be most interested to hear any advice and opinions.

User

Posted 22 Aug 2016 at 15:26

Hi,
depends on the size of your prostate and whether you already have bladder problems but why not ask about brachytherapy as well as traditional radiotherapy (which is what I think you mean by x-rays) - with some kinds of brachytherapy you don't have to keep going to the hospital all the time.

One silver lining ... if I got cancer I think I would want to live within the catchment area for the Royal Marsden. Loads of research and trials going on all the time :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Aug 2016 at 15:39

Hello minotaur and welcome to the site.

If you give us your PSA and Gleason scores it may help with advice.

With localised cancer I'm surprised you only have the two options. Was that your choice or all that was offered. Nothing else discussed with you?

My husband had localised and opted for Brachytherapy. You may also be eligible for Active surveillance (at least for a while till you make up your mind).

In the publications section we have a set of leaflets entitled "The Toolkit" which gives information on the various treatments and possible side effects of each.

They are "possible" and not a given that you will have all or any of them on a permanent basis.

Whatever route you choose, think about it carefully before deciding and don't be rushed. We can offer advice and what worked for us but you're the one who lives with the results.

Best Wishes

Sandra

*******

We can't control the winds - but we can adjust our sails

User

Posted 22 Aug 2016 at 15:54

Thanks Sandra, (and Lyn)

PSA is 11, Gleason is 7, Clinical stage is T2, but with Capsular Invasion. I think it is for this reason that they want to start treatment now and not go to active surveillance.
I was given a number of the toolkit leaflets by the Macmillan oncology nurse (St George's Hospital, Tooting) and she took me through them. She checked at the same time about Brachytherapy and advised that it was not possible, maybe because of the location of the cancer up against the outside of the gland.

Waiting for my bone scan appointment next.

Best regards
Paul

User

Posted 22 Aug 2016 at 16:43

Hi Minotaur
This decision is so very very hard and can only be made by you alone . But we're all here to help if we can . We are all different and it seems that EVERY prostate cancer is different foe each person also . Click my picture and read my profile. My experience is slightly biased because I had surgery and it was too late ( they wouldn't have offered it if they had known my spread ),.
At one point I was offered HT with HDR Bracchy and then some RT also. That sounded just as awful to me as surgery , but while I was deciding they removed the offer . Unfortunately there is no way it seems to beat this cancer without quite large personal loss both mentally and physically . I wish I hadn't had the surgery; it has changed me forever and not cured me.
Your results are quite low and caught early , so you could have a full cure with surgery .........
You don't need to rush at the moment. Look through some threads and read everything in the toolkit -- it all becomes clearer I promise . I wish you luck and stay in touch

User

Posted 22 Aug 2016 at 16:59

Hi Mate,

I have localised PC. Gleeson 4+3.

I was initially told that i couldn't have Brachy. But later leaned that I could have HDR Brachy. at a diifferent hospital, which I had 4 weeks ago. I still have to have the follow-ups with the consultant, (on Friday). It was the best decisuion, for me. I have had no side effects at all.

Do question the options offered to you fully. Different consultants only offer what they specialise in, it seems.

Good luck.

dave.

User

Posted 22 Aug 2016 at 17:02

Hiya..

"I think I can deal with hot flushes and low moods (I have these already...) but I don't fancy catheters, bags, nappies, a different bed, etc etc."

I had an operation (open) - read my profile for progress to date.

Re above:

Catheter - in for 9 days... was not a real problem and didn't stop me walking in the hills. Have forgotten about it now.

Bags - you mean catheter bags? - again not a real problem.

Nappies - ?? I used Tena man pads (which are very discrete) whilst my continence was dodgy - but that didn't last long. I know everyone is different but I think more are dry soon (Three - Six months) than not and a lot are dry in days.

Different Beds? - Why on earth would you want a different bed? (I assume you mean different to your partner).

Good luck with whatever treatment you choose...

KRO...

User

Posted 22 Aug 2016 at 18:16

Hi I had RP as the option for RT would be available after, as surgery after RT is rarely done , I did gone on to early RT this was offered as positive margins even though PSA was undetectable . I do not have any incontinence issues but do have ED , but am happy with my choice and would not change my decision with hindsight .all the best Andy

User

Posted 23 Aug 2016 at 11:03

Thank you KRO.

I am here to learn. I had thought that if I am going to wet the bed for 3 - 6 months, then I should have a separate bed from my wife so i can sleep on a rubber sheet and change the bedclothes without disturbing her, Is that not how incontinence works?

It's only Day 4 so I'm a long way yet from making a decision.

I thought Radiotherapy would mean being locked in a dark room and listening to The Archers and Gardeners Question Time for 37 days. That would be grim, I am much more relaxed about high energy Xrays.

Paul

User

Posted 23 Aug 2016 at 12:43

I am possibly the worst advert for having surgery, but given the choice again I would still go down the surgery route. Having had positive margins the only thing I would do differently is have adjunctive RT which until I came on this site I knew nothing about.

As regards the separate beds, I wore a pad inside my briefs and a pair of tenna4 pants over the top. Unless the tenna4 gets soiled keep reusing them. No sweating for me and none for the OH. I did a fair amount of stopping in hotels so tenna4 approach saved using a bed guard. Having spent last night sleeping on the small beds pads in hospital even they made me sweat.

Thanks Chris

User

Posted 23 Aug 2016 at 18:23

Hi Paul

I have sent you a private message.

KRO...

User

Posted 23 Aug 2016 at 21:08

Hi,

I chose surgery. Check out my profile. Incontinence was a pain but not to the extent you seem to imagine. I was dry in bed reasonably quick after the catheter was removed. It took a little longer for me to be fully continent again. It never gushed out it was just a trickle that was easily dealt with by pads.

I wish you well with your decision making. As has been said it has to be your decision and you must decide the path for you. My rational was I have this badness inside of me so whip it out please.

Paul

Edited by member 24 Aug 2016 at 09:05 | Reason: Not specified

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