Time to make a treatment choice

Hello Lonnie88  A warm welcome to the club - we aren't a bad bunch.

Reading your post between the lines I assume you have almost made your mind up as to which way to go - you are checking om personal experiences to back up your thoughts.

I am 26 months down the Hormone / Radiotherapy route, I am on 36 months Hormone Therapy- I didn't have a choice due to an "inconclusive MRI" with a shady area (being a wimp I don't think surgery would have been my choice though). I have had a few complications on my journey - needing a TURP operation and CKD - but having said that life is good - I can cry for England, I have ED and I can put weight on just looking at a pie but I have mastered all the other side effects - and we don't get them all.

You can read my journey by clicking on my name or avatar. Feel free to come back to me with any questions.

I haven't seen your TNM staging or Gleason score - but has that ruled out a third treatment choice - Brachytherapy?

Good luck with your choice - keep us posted.

Best wishes - Brian

Hi Lonnie and welcome from me, so sorry to hear about your big brothers, I can imagine that pays a big part in your decision process' Like Brian "millibob", HT+RT for me, no other option, Had a few side effects which apart from an occasional incontinence issue are all way behind me and was fortunate to have no ED problem, Nearly one year post RT and doing ok, take care.

Eddie

Hi Lonnie, I guess the reason you get two options is that they also find it a very hard call. If you have the money you might want to talk to a private consultant (like I did). I doubt they would make the choice for you but they might help you feel happier about your eventual choice. They tend to charge around £200, and in my experience you can talk to someone within days (e.g. via 'Spire' healthcare)

Hi Lonnie

It's a confusing time wondering which route to go down and everyone has their own thoughts & preferences.  I was diagnosed as Gleason 7 (4 + 3) & was offered surgery or HT / RT, but knew I didn't want an operation if I could help it (must be the wimp in me).  What also helped swing the HT / RT route was that I was told I would only be on HT for 9 months, & was initially going to have only 5 sessions of RT at the higher dose over a much shorter period of time & this was aimed as a cure.  As it happens, following my planning scan the 5 sessions weren't an option so ended up with 20 RT fractions over 4 weeks anyway.

Looking back I'm happy with the choice I made.  If it helps at all you can read my journey by clicking on my avatar, & if you have any questions then please feel free to ask away.

All the best,

Brian

Hi Lonnie. Like Millibob and Buzzers, I'm also a wimp. In fact I cannot imagine a bigger wimp. It is great though that we seem to have our own group in this club :)-. Difference is I chose to have the op. I was Gleeson 4+5, PSA9 and T3a. I chose the op because I wanted to get it in one foul swoop and also I liked the idea of being able to have RT later as a back-up if the op was not totally successful. (You cannot have the op after having RT). I found the 2 month wait, the build up to the op and the worry worse than the actual op. I was really petrified during the leadup. In at 07.00, bit of discomfort, pretty nurses running after me, a few fairly good NHS meals and out at 18.00 the following day. What's not to like?? I wouldn't like to do it again but I would choose the same route. That was 17 months ago. I still suffer from ED pretty bad. Incontinence was very bad and really soul destroying but that is 1000 times better now. Leak a very small amount at times but so do a lot of men and women of 69 years for so many reasons. I had no real pain as such and didn't take pain killers. Quite a bit of discomfort I guess, particularly with the catheter, which I had for a week. Able to desk work a bit and walk a couple of miles after a week. Able to drive after a couple of weeks and really back to doing everything after 6 weeks. There is no one right choice. Everyone makes their own decision and from what I have understood from post, just about everyone has been happy with their choice. The op went well for me and my margins after were zero. However , my PSA is creeping up now and it looks as though I will be heading towards my back-up of RT. I am very positive about the outcome. Best of luck in what is possibly the biggest choice you have had to make in your life. It not a lot of difference to wondering whether to have custard or ice cream on your bread and butter pudding. Both are good assuming the cook knows how to use the ingredients and tools.

Thank you for your response and your very informative journey. I think you have had to face such a lot to get to where you are. I haven’t made my mind up as yet and run hot and cold about both treatments. I still have 2 weeks or so to make a call because I am going to the hematuria clinic first for a inspection of my bladder.

The short term pain & discomfort don’t figure for me. It will pass. It’s the long term potential of ED and incontenance which are my issue and the fact that RT rules out surgery iif PC should return.

Reading all the kind replies on this thread and the various journeys the side affects during the treatments are what I am steeling myself for. The long term ones seems to be a bit of a lottery.

I think I will start a “journey” as reading them makes you realise that life goes on as side effects are manageable. A cancer that is allowed to spread & untreated. would end up with one very undesirable outcome.

i wish you the best going forward. 

Hi Eddie, good to hear you are doing well although reading your “journey” if sounds like anything but plain sailing and you have a lot going on.

Take care of yourself and I wish you all the very best.

regards

L 

Hi Poldark

Thank you for your reply. I must admit to being lucky with my NHS hospital. The service and responses has been excellent in the Urology Department. Not had to wait more that 2 weeks for any follow up and they have made any of the team available within a 24 hour call back window. 

I would not rule out private if needed but so far it’s been top notch.

Regards

L

Thank's Lonnie, As you said to Brian, life goes on, as will yours. Even with all my heath issues i am enjoying life and 100% independent, take care.

Eddie

Good Morning Lonnie88 

Thank you for your reply - you are about to make a choice that will affect the rest of your life - it's something that does require research and I wish you well which ever route you take.

Yes - a diary of your journey on your profile, not only helps others in the future but it serves as a reminder to yourself of where you have been and why you did what you did. To start your profile off, on your home page, click on the chair (top right) then "profile" and then "edit".

Keep us posted and best of luck.

Best wishes - Brian.