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Surgery or Radiotherapy? Re side effects

User
Posted 26 Sep 2021 at 23:08

Yet another question: My doctor said I would have to either have radical prostatectomy without nerve sparing due to the position of the cancerous cells or radiotherapy. In the research I've been doing, it sounds like after after non nerve-sparing surgery, ED medications like Cialis and Viagra do not work. Does anyone know about this? Am I better to opt for radiotherapy in terms of ED issues?

User
Posted 27 Sep 2021 at 01:21

Hi Mark,

You have a similar choice that I was faced with, prostatectomy which would probably not be nerve sparing, or radiotherapy. In my case, they thought it likely that if I had a prostatectomy, I'd have to have radiotherapy afterwards too.

You are correct that the PDE5 inhibitor pills (Cialis, Viagra, etc) will not work if you don't have working nerves. These drugs effectively amplify the nerve signal in the penis, but amplifying a zero signal will still give zero. They help if the signal arriving is weak due to partial nerve sparing, or only partial nerve recovery so far, or low signal due to low libido/arousal.

So two things swayed it for me.

1. Sexual function was important, and radiotherapy offered a much better chance of that still working afterwards when nerve sparing unlikely.

2. If I had a prostatectomy, I'd likely end up with both treatments and both sets of side effects, so why not just go with radiotherapy? (May not apply to you - I don't know your precise diagnosis.)

If you go the radiotherapy route, things to consider:

You will probably be on hormone therapy for a time, and for 80% of men, that switches off libido and sexual function. That's temporary just while you're on hormone therapy (plus a recovery time afterwards). However, if you don't put in regular effort with penile physio, you will likely get to the end of the hormone therapy, get your libido back, but find your penis doesn't work anymore. 80% of men on hormone therapy can't get erections, so need to use a pump daily or at least every other day to have an erection. There is some weak evidence that taking 5mg daily Tadalafil will also help by improving blood circulation in the penis when flaccid (and if you're one of the 20% who can get erections on hormone therapy, it might help with that too).

There is still a chance of radiotherapy damaging erections, but this is lower than with nerve sparing prostatectomy (and much lower than with non-nerve sparing prostatectomy). If this is going to happen, it happens slowly with the first signs by 2 years after radiotherapy and a gradual deterioration continuing for years. The main cause of this is fibrosis of the blood vessels feeding the penis.

I am now over 2 years past the radiotherapy, and hormone therapy is wearing off. I am lucky to be in the 20% who could get erections on hormone therapy, and that all still seems to work although I should have used the pump more than I did earlier on. If you have any questions, do ask.

User
Posted 27 Sep 2021 at 02:49

I had surgery three and a half years ago by one of the top surgeons in Europe.

I was completely continent about three weeks after, but have had total erectile dysfunction ever since.

Moreover, the surgeon or his pet robot nicked two inches off what was a perfectly adequate and functioning penis, now only useful for pissing through!

Still, cancer-free as of now.😀

There are no easy choices, and you might need to sacrifice your sex life to save your life.

Best of luck, whichever path you choose.

Cheers, John.

Edited by member 27 Sep 2021 at 02:50  | Reason: Not specified

User
Posted 29 Sep 2021 at 13:11
I had RT in Feb/Mar 2019, Mark, and have no "functional" issues with ED. However, as I'm sure you're aware, HT does take away the desire, and in my case, despite having been off HT for over a year now, the libido has never recovered.

Best wishes,

Chris

User
Posted 15 Oct 2021 at 21:50

Mark, if you haven't  made your decision by now this might be a useful read:

Prof. Shakespeare

I'm sorry it's only a newspaper article but I can give you more details if you're interested.

With a Gleeson score of 9, I opted for RT in a situation where there was concern that my cancer had spread to several nearby glands.

The PET scan guided RT being used by Shakespeare is very, very precise and has a high success rate.

Post RT therapy I've been on Zoladex nearly a year now and while it's not a heap of fun, it would seem to do far less damage than prostatectomy. 

 

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User
Posted 27 Sep 2021 at 01:21

Hi Mark,

You have a similar choice that I was faced with, prostatectomy which would probably not be nerve sparing, or radiotherapy. In my case, they thought it likely that if I had a prostatectomy, I'd have to have radiotherapy afterwards too.

You are correct that the PDE5 inhibitor pills (Cialis, Viagra, etc) will not work if you don't have working nerves. These drugs effectively amplify the nerve signal in the penis, but amplifying a zero signal will still give zero. They help if the signal arriving is weak due to partial nerve sparing, or only partial nerve recovery so far, or low signal due to low libido/arousal.

So two things swayed it for me.

1. Sexual function was important, and radiotherapy offered a much better chance of that still working afterwards when nerve sparing unlikely.

2. If I had a prostatectomy, I'd likely end up with both treatments and both sets of side effects, so why not just go with radiotherapy? (May not apply to you - I don't know your precise diagnosis.)

If you go the radiotherapy route, things to consider:

You will probably be on hormone therapy for a time, and for 80% of men, that switches off libido and sexual function. That's temporary just while you're on hormone therapy (plus a recovery time afterwards). However, if you don't put in regular effort with penile physio, you will likely get to the end of the hormone therapy, get your libido back, but find your penis doesn't work anymore. 80% of men on hormone therapy can't get erections, so need to use a pump daily or at least every other day to have an erection. There is some weak evidence that taking 5mg daily Tadalafil will also help by improving blood circulation in the penis when flaccid (and if you're one of the 20% who can get erections on hormone therapy, it might help with that too).

There is still a chance of radiotherapy damaging erections, but this is lower than with nerve sparing prostatectomy (and much lower than with non-nerve sparing prostatectomy). If this is going to happen, it happens slowly with the first signs by 2 years after radiotherapy and a gradual deterioration continuing for years. The main cause of this is fibrosis of the blood vessels feeding the penis.

I am now over 2 years past the radiotherapy, and hormone therapy is wearing off. I am lucky to be in the 20% who could get erections on hormone therapy, and that all still seems to work although I should have used the pump more than I did earlier on. If you have any questions, do ask.

User
Posted 27 Sep 2021 at 02:49

I had surgery three and a half years ago by one of the top surgeons in Europe.

I was completely continent about three weeks after, but have had total erectile dysfunction ever since.

Moreover, the surgeon or his pet robot nicked two inches off what was a perfectly adequate and functioning penis, now only useful for pissing through!

Still, cancer-free as of now.😀

There are no easy choices, and you might need to sacrifice your sex life to save your life.

Best of luck, whichever path you choose.

Cheers, John.

Edited by member 27 Sep 2021 at 02:50  | Reason: Not specified

User
Posted 27 Sep 2021 at 09:52
Thank you so much guys. That's really helped inform me, and it's greatly appreciated.
User
Posted 29 Sep 2021 at 13:11
I had RT in Feb/Mar 2019, Mark, and have no "functional" issues with ED. However, as I'm sure you're aware, HT does take away the desire, and in my case, despite having been off HT for over a year now, the libido has never recovered.

Best wishes,

Chris

User
Posted 15 Oct 2021 at 21:50

Mark, if you haven't  made your decision by now this might be a useful read:

Prof. Shakespeare

I'm sorry it's only a newspaper article but I can give you more details if you're interested.

With a Gleeson score of 9, I opted for RT in a situation where there was concern that my cancer had spread to several nearby glands.

The PET scan guided RT being used by Shakespeare is very, very precise and has a high success rate.

Post RT therapy I've been on Zoladex nearly a year now and while it's not a heap of fun, it would seem to do far less damage than prostatectomy. 

 

User
Posted 16 Oct 2021 at 00:19
Thanks Microcolei.

I actually live on the Mid North Coast of NSW just outside Port Macquarie, which is mentioned in the article, so it's very relevant. Greatly appreciated.

User
Posted 16 Oct 2021 at 04:37

Right time, right place I'd say Mark!

I was treated in Port Macquarie at the hospital, which is where the Shakespeare team operates from. I think you should be able to get a referral from your GP.

If you want any more information please contact me.

Jules

 

User
Posted 16 Oct 2021 at 08:46
Thanks Jules. Will do.
 
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