HT/RT or Surgery ?

Hi Ray,

I guess you have hit on an important point, guys don't like to admit being incontinent let alone impotent!

In my case, first time around with the standard EBRT and 3 year HT, it took a good 12 months to recover sexually, and even then sex was a struggle, would I stay hard long enough etc.  But when I was asked at follow up appointments had I regained sexual function I replied yes, because without going into graphic detail I had regained sexual functions of sorts.  So I guess I count as one of the 60%, or whatever my oncologists batting average is, of those who have regained sexual function after RT.

Same with the salvage HDR Brachytherapy, 9 months on and I am continent, in the sense that I don't wet the bed or need to wear pads.  However, I daren't wear light coloured trousers if I am going out for the day, because chances are despite Tamsulosin I will end up dribbling if I am not careful.

So I think all of these treatment averages dividing blokes into continent or incontinent, virile or impotent, miss the point, because while I am still technically virile and continent I am no where near as virile and continent as I was before treatment.

:)

Dave 

For anyone surprised by DK's post, the definitions of 'continent' and 'potent' (as in 'not impotent') after treatment for PCa as far as NHS data is concerned:-
Continent - using one pad or less per day at 12 months post-treatment
Potent - able to get an erection either naturally or with chemical / mechanical means (ie with tablets, injections or a vacuum pump) 12 months post-treatment

'Potent' therefore has nothing to do with whether or not the man can get sufficiently erect for penetration, or whether he has regained enough length/girth for penetration. And a man who has urinary urgency or who dribbles a little will be considered 'continent'.

I have posted this before but perhaps worth telling the story again of the first time we met Mr P and he spelt out the implications of surgery with John. He talked about the national stats for side effects and his own data but made it very clear that he believed many of his patients lie to him and say everything is working properly even if it isn't. Mr P uses the lifestyle questionnaire at every review appointment with patients - he told us that when he is asking about continence and ED, he asks the man but watches the partner's face because that gives him a truer picture of how well it is going.

Even though it was spelt out very clearly to us, John still believed that the side effects wouldn't happen to him because that must be about old men, mustn't it? It was therefore a huge shock to him to find that being young is not a magical protection.

Informative as ever Lyn :-)

I also take your point on new normal. Now when I was on HT which brought out my feminine side I would have agreed. However, and this took a number of years after HT ended my mind returned to my previous Virgo black or white mode. Thus now there is only one normal which was as it was before treatment.

Like John I was well informed on possible future long term side effects. However at 58, fit and healing unbelievable quickly after everday knocks and wounds I dismissed them as thanks but I'll be fine - you got that one wrong Ray :-)

To all those considering which treatment control or cure is the main aim and I wouldn't disagree with that but do take on board side effects can be life long.

Kind regards as always

Ray

Yes treatment side effects. RT by itself can come with long term side effects but going on the decade here those guys have suffered far less than RT/longer term HT guys. One explanation on the ED front is with HT you can lose the desire so the use it or lose it is more difficult but not impossible to achieve. Again with HT as well fatigue is more of a longer term issue than RT alone. As regards longer term bowel issues all my screening tests to-date have been fine but others do suffer.

As no doubts mentioned before to you there is a need if matters do go pear shaped for you to be able to look back and be content you made the right decision at the time. You can help achieve that by gathering as much differing info as you can. A word of caution on your meet. Some guys here have researched to source the best surgeon with excellent track records yet are 100% long term incontinent and impotent. Please do not read that as being biased against surgery just be aware. Ideally you could do with meeting the Urologist and have access to him for a few days so you can ask more questions when the info you gained starts sinking in.

You were very unlucky to be on this path but you could also be very lucky and get away with at worst just short term issues.

Good luck

Ray

Hi Sandy,

Your last post says it all '...Everything just seems to be starting to move fast now.'

For your own peace of mind, you need to take as much time as you want, to gather all of the information that you feel you need, to allow you to make an informed choice.

I am not recommending RP or RT thats not my role and its not wise.  I remember some years ago trying top decide whether to buy a Ford or a Vauxhall, all my mates who had Fords reckoned they were great, all my mates who drove Vauxhalls reckoned they were fantastic, it was only after I had bought a car that my mates started asking if it had the same faults and foibles as theirs.

I guess it is the same with PCa?

If you are worried and feel that you must do something to stop the cancer progressing, but can't make your mind up what treatment to go for, then HT is a good stop gap, in that 1 shot should stop the cancer in its tracks, the side effects are minimal in comparison to what you will get from long term HT and/or radical treatment.

The important thing is to make your decision in your own time and not feel rushed into anything.

:)

Dave

Sanders going private for a 2nd opinion will be quicker but you are entitled to a 2nd opinion on the NHS. I saw three urologists and the oncologist twice

Bri