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Radiotherapy / hormone surgery advice

User
Posted 09 Jul 2019 at 20:50

Options are radiotherapy and hormone treatment versus non nerve sparing surgery. Currently 65% in favour or radiotherapy / hormone treatment. Any stories or advice appreciated. Thanks 

User
Posted 09 Jul 2019 at 20:50

Options are radiotherapy and hormone treatment versus non nerve sparing surgery. Currently 65% in favour or radiotherapy / hormone treatment. Any stories or advice appreciated. Thanks 

User
Posted 10 Jul 2019 at 06:31
This is far from a scentific survey, but myself and two friends have had radical prostatectomies within the last year by three of the top surgeons in Britain.

Both my pals have had recurrence already, and are now undergoing hormone therapy and or radio therapy, which they could have had in the first place, thus avoiding surgery.

My PSA is currently undetectable, as are my erections☹️.

Best of luck whatever you choose, and it will be your choice, so seek as much advice as you can.

Cheers, John.
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User
Posted 09 Jul 2019 at 22:31

Hello John,


Sorry you find yourself here, but it's a great forum which can give you excellent support.


First thing you should do is to order a copy of the Toolkit - it's packed with leaflets about all the treatment types.


It really helps if you can fill in your profile Bio, so we know what your diagnosis is. This way, we can give you advice tailored to your situation, rather than general handwaving. Click on my avatar to see an example.


You might look at a recent post I did which discussed options, but note it's tailored to that person's situation, which probably isn't the same as yours. The whole thread is interesting, but many parts may not apply to your diagnosis, since it's tailored to the diagnosis of the original poster.


https://community.prostatecanceruk.org/posts/t21432-First-post---time-to-choose#post218948


But whilst doing general handwaving, broadly, the survival outcomes from the two types of treatment are similar. There are some specific situations which can make one better than the other.


However, the side effects of the two are different, particularly if you don't have the option of nerve sparing. This is a matter of considering which side effects are more important for you personally. If you aren't being offered nerve sparing surgery, that might also suggest the cancer is on the rear or lower surface of the prostate possibly with perineural invasion, and that might favour radiotherapy, as surgery might have to be followed by radiotherapy anyway. Radiotherapy alone would also give you a chance of keeping erections in the short term, and perhaps 50% chance in longer term.

User
Posted 10 Jul 2019 at 06:31
This is far from a scentific survey, but myself and two friends have had radical prostatectomies within the last year by three of the top surgeons in Britain.

Both my pals have had recurrence already, and are now undergoing hormone therapy and or radio therapy, which they could have had in the first place, thus avoiding surgery.

My PSA is currently undetectable, as are my erections☹️.

Best of luck whatever you choose, and it will be your choice, so seek as much advice as you can.

Cheers, John.
User
Posted 10 Jul 2019 at 07:05
John, I went down the HT/RT route and it’s been pretty reasonable, in terms of side-effects. I started HT (bicalutimide) last August, and had the RT in Feb/Mar this year. It’s certainly a gentler treatment than surgery.

Best wishes,

Chris
User
Posted 10 Jul 2019 at 08:39

Thanks that's useful. I have read the leaflets that have been  provided and met with oncologist and surgeon. Now looking for personal comments. I do appreciate everyone is different but just trying to gather as much as possible. Thanks 

User
Posted 10 Jul 2019 at 08:41

Thanks Chris 


That's really it useful. It's a bit of a minefield but hoping we're making the right choice. Cheers 


John

User
Posted 10 Jul 2019 at 08:42

Thank you. Useful to see comments about the surgery. Sorry to hear your pals are now having further treatment 

User
Posted 10 Jul 2019 at 17:26

Hello,


I had surgery, then radiotherapy, waiting on whether I will have hormone treatment, in the meantime I have suffered a Stricture which means I have to use a catheter every week for life to keep my Urethra open.


Difficult decision to make, best wishes in your decision.

User
Posted 10 Jul 2019 at 20:17

As my profile RT and HT still here nigh on 15 yrs. Yes it comes with long term stuff one of them being I'm still breathing 🙂

User
Posted 10 Jul 2019 at 21:36

Thank you. So tough on you. 

User
Posted 10 Jul 2019 at 21:42

Thanks Ray I appreciate it could be a long and tough road ahead but I think your post has given me a little more positivity. 

User
Posted 10 Jul 2019 at 21:59

hi John,


What is/are your Gleason values ?


I had surgery.  non nerve sparing and have no side effects now. ED for 3 plus years.  still improving.


dry immediately. 


Decision depends on , are you working ? closeness of treatment centre etc. overall fitness , health.  Surgery is higher risk, however I believe it is now being performed with no overnight stay.


Who needs a bed I ask  ??? 


see my profile.   My brother decided on RT.


Post PSA 'anxiety' is probably no different.   ie one being specific.  ie  at or near undetectable and the other a 'nadir' . 


Have you been offered other options ?


 


regards Gordon   


 

Edited by member 10 Jul 2019 at 22:01  | Reason: Not specified

User
Posted 11 Jul 2019 at 19:38

Hi, I chose HT with HDBrachy and RT with a PSA of 27 and G9. I was 62 on diagnosis. Difficult decision.


The HT has hit me hard mentally but physically hardly any effects. My PSA is now 0.08 and I have my last injection October. I use 5mg Tadalafil which works pretty well but I’ve been told off by the ED clinic for not using the pump - my bad - I hate it with a vengeance.


The mental side effects of HT vary person to person but I need to see a counsellor once a month to keep me pointing in the right direction and also 30mg of Mirtazapine helps a little.


Just my tuppence worth. Once you have made a decision don’t go wondering what the other options would have been like. They are all grim but we’re in a grim place.


My counsellor tells me I will never be the old me again, but can’t say anymore. I am very sensitive now and maybe that will go, or not, I don’t know.


So lots of din knows but hopefully I have helped in some small way with your decision making.....


Phil

User
Posted 11 Jul 2019 at 21:33

Thank you very much. Very useful insight. It's something else to understand. Sorry you haven't got the old you back. And I won't try to patronise you but wish you well for the future

User
Posted 11 Jul 2019 at 21:57

Thanks John , but I don’t want my old me back. I had got complacent and lazy with my feelings. This has all been a smack round the face. I lost nearly a stone and tackled a 5k Tough Mudder in May. I now show my feelings for my wife a lot more. In fact a bit too much as she’s not used to it 😆.


The sensitivity is partly due to some old stuff nothing to do with PCa. But it’s difficult to deal with and I hope I become more able to deal with it. But I know I’m not the only one with old ‘s***’ to deal with and the HT can end up opening that again. Not sure why it can open up your mind like that but I know I’m not the only one.


No easy path I’m afraid , it’s a bit of a minefield.


Phil

 
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