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Opinions please ?

User
Posted 16 Oct 2015 at 23:45

Hello all,

Ive been reading the posts and following stories on here for a couple of months now, been a bit reluctant to post as i,m a bit of a private

person in some respects, yet completely out going in others :)

I,ll just say to start, i think there some fantastically courageous people on this site, and some etremely wise ones too (ie lyn) who although

i,m sure she wouldnt admit it is (in my view) very much an expert on PCA..

Not really sure how i should do this but my stats are..... diagnosed july after about a year of peeing problems, 3rd visit to urology dept in

Leeds a nodule was found, went for mri scan and then biopsy . the biopsy (which i only got one anti biotic tablet for which i didnt think was not enough) caused severe prostatitis 2 days later... i presented to A+E  in Leeds after almost collapsing and was kept in for 5 days with a temp of 40 degrees...anyway the results of the biopsy showed a T2a Gleason 3+4 tumour..

Iwas told by the very experienced Consultant at my age 58, surgery would be the best option, as if that did fail, then r/t was still an option.

this was the option i decided upon , i,m fit , ex gym instructor, go to gym 3/4 times a week and also frequent outings on my mountain bike.

August 17th had Da vinci surgery, no op probs, surgeon came into ward day after and said everything went ok, i felt ok, hated the bloody catheter from waking up tho :) came home after 2 days in hosp...got a uti due to catheter which was very painful and got a course of anti biotics from my gp...catheter remained in for 11 days.... fantastic relief to have it out AND surprisingly painless (although a weird feeling)

From this point on (and i am still now, incontinent) 3/4 pads a day and the only time i,m not leaking is, when i sit down for a while, or laying in bed, i,m grateful i havent had any heavy voids during the night, i usually have to get up 3/4 times though, but i was like that before surgery so its nothing new ...

So... this week, 13th Oct i went for 1st opa , .. good news and bad news... Bad = capsule had been just broken so my tumour was upgraded to a T3a :( but good news was ... no positive margins, lymph nodes (4) were all clear and psa was 00.5 so my results were (i think similar to Alanb ,s ) NOW heres where i need the wisdom and experience of Lyn and others... the consultant said to me.. weve got

trials at the mo for people with T3,s which involve 5 weeks, 5 days a week of r/t . you dont have to do this, its entirely up to you..

so i said what if i didnt do this? he said well we,ll just get you back in 3 months and see what your psa level is, then if its gone up look at our options.... because i,d already researched r/t and other other options i said no thanks... i,ll just come back in 3 months and see where we are... basing MY opinion on the fact that all the other results were i think pretty good ?

Anyway sorry if ive gone about puttiing my stats etc on here the wrong way and for the war n peace post :) but if any of you wise and caring people could maybe give me some opinions that would be great...

Cheers Keith...

 

User
Posted 17 Oct 2015 at 05:26

hi keith

as you say the ones who know will be along with some suggestions and help, all I can tell you is a old friend of mine went down the RT route suggested and so far so good for him

 

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 17 Oct 2015 at 09:27

I am not an expert Keef, far from it. I just had to learn a lot about the different aspects because 3 of the 4 most important men in my life had PCa. I read all the research papers but I am still only putting my interpretation on things so please don't think I know better than anyone else - I can get it wrong.

As far as your post-op results go, John decided to wait and even when his PSA started to rise he delayed RT because he was still struggling with side effects from the op. Two years after the surgery, it became clear that something had been left behind and he began RT/HT - he has been undetectable ever since.

The trial at Leeds is to see a) whether high risk men do better with adjuvant RT than waiting to see if they need salvage RT later and b) to see what the impact is of giving higher than usual doses of RT over a shorter time. It is a national project of which Leeds is only one participant.

In the end it comes down to your personality - will you be happier having the RT just in case or waiting to see if you need it?

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

User
Posted 17 Oct 2015 at 09:42

Keep. ..I had very similar results to you. Upgraded to T3a after surgery, small focal breech, nodes clear...PSA 0.06. Although I'm not sure if yours were 0.005, 0.05 or 0.5. I think it's interesting that the surgeon mentioned the trial.
I went to talk to the oncologist about the trial and initially decided against it....she kept an eye on my PSA which started to creep up over a 3-4 month period so went in for RT.
That was 2 years ago and my latest PSA was 0.02. You can read my profile by clicking on my name.

Bri

User
Posted 17 Oct 2015 at 12:07

Hi Keith
I would think the continence thing is because obviously the RT can cause urinary problems for some men.

Adjuvent RT usually has to take place within 6 months of the previous treatment.

Bri

User
Posted 17 Oct 2015 at 20:00

Hi Keith,

My local support group had a recent talk from an onco who had been in at the start of the Stampede trials fifteen years ago. Apparantly they had concluded RT was most useful where PCa had only spread to the pelvic lymph nodes, they had been trying to determine what treatments were most useful bearing in mind the spread of the disease . However as other posters have suggested, it's a question of getting as much info as possible and weighing up the options for your individual case. Very best of luck,

 

Fiona.

User
Posted 18 Oct 2015 at 01:23

Hi Keef,

I would just add one note of caution, the mountain bike.

I am far from an expert in this field, and mostly physical exercise is supposed to be very good for us, both at warding off the cancer and at minimising the side effects of treatment, but somewhere in the back of my mind there have been posts on here in the past warning of the dangers of cycling, the saddle putting physical pressure on the prostate etc.

Indeed I had a friend, who was a very keen cyclist, not mountain bikes but time trials on the roads etc, and he died young from PCa.

I suggest it might be something you could research, because I am far from sure of my facts, but in the back of my mind I have read of links between racing saddles and prostate cancer. 

:)

Dave

User
Posted 18 Oct 2015 at 10:04

Hi Keith I have had adjuvant RT and had very small side effects going back on incontinence slightly which is back to normal know, my PSA has been undetectable since op last Dec I could not decide my wife & daughter decided they said prevention is better than cure and consultant thought at the moment this had the edge but the jury was still out, good luck with your decision all the best Andy

User
Posted 18 Oct 2015 at 20:10

There are two separate issues around cycling.

1) Competitive and very keen cyclists have a raised PSA but seem to have no increased risk of getting prostate cancer so it is advised that if a man has raised PSA and is a regular cyclist, he should advise the specialist before deciding whether or not to go ahead with a biopsy as the (bit) higher than average PSA is likely to be to do with the bike rather than a medical problem.

2) Men that have had surgery should avoid cycling for a time after the op as it is thought riding a bike could slow down or even prevent the nerve bundles from repairing and therefore making ED more likely to be permanent.

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

User
Posted 18 Oct 2015 at 20:13

Adjuvant treatment is usually an additional treatment that was either planned beforehand (as it was thought two treatments together would be more effective than one treatment on its own) OR where it is realised straight after the first treatment that something else is probably needed.

Salvage treatment is used where the first treatment was hoped to have worked but it later becomes clear that it hadn't done the job.

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

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User
Posted 17 Oct 2015 at 05:26

hi keith

as you say the ones who know will be along with some suggestions and help, all I can tell you is a old friend of mine went down the RT route suggested and so far so good for him

 

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 17 Oct 2015 at 09:27

I am not an expert Keef, far from it. I just had to learn a lot about the different aspects because 3 of the 4 most important men in my life had PCa. I read all the research papers but I am still only putting my interpretation on things so please don't think I know better than anyone else - I can get it wrong.

As far as your post-op results go, John decided to wait and even when his PSA started to rise he delayed RT because he was still struggling with side effects from the op. Two years after the surgery, it became clear that something had been left behind and he began RT/HT - he has been undetectable ever since.

The trial at Leeds is to see a) whether high risk men do better with adjuvant RT than waiting to see if they need salvage RT later and b) to see what the impact is of giving higher than usual doses of RT over a shorter time. It is a national project of which Leeds is only one participant.

In the end it comes down to your personality - will you be happier having the RT just in case or waiting to see if you need it?

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

User
Posted 17 Oct 2015 at 09:36

Thanks very much for your reply Lyn, i think i made the right personal choice by opting to wait, its just nice to see what people
like yourself and others who are extremely knowledgable on the subject think :) i,ll post again when i,ve had my next PSA check..
Thanks again : )

User
Posted 17 Oct 2015 at 09:42

Keep. ..I had very similar results to you. Upgraded to T3a after surgery, small focal breech, nodes clear...PSA 0.06. Although I'm not sure if yours were 0.005, 0.05 or 0.5. I think it's interesting that the surgeon mentioned the trial.
I went to talk to the oncologist about the trial and initially decided against it....she kept an eye on my PSA which started to creep up over a 3-4 month period so went in for RT.
That was 2 years ago and my latest PSA was 0.02. You can read my profile by clicking on my name.

Bri

User
Posted 17 Oct 2015 at 11:18

Hi Bri , thanks for reply, yes sorry i confused the PSA issue there, my level was 0.05 which i think is not too far from undetectable (depending on who you ask ) :) just looked at your stats mate,, wow youve had it a bit rough !!! but at least now you seem to be getting there.... re - the trial my onco suggested ? i,ve also seen somewhere that adjuvant r/t (i think its called) isnt usually started until the patient is fully continent ? and after 7 weeks i,m nowhere near that yet but realise thats just time, and it seems the majority of men show improvement 3 to 6 months in (but i realise its all person specific) has anybody any
comments on the being continent for r/t issue ? i,d be glad to hear them...
Cheers Keith...

User
Posted 17 Oct 2015 at 12:07

Hi Keith
I would think the continence thing is because obviously the RT can cause urinary problems for some men.

Adjuvent RT usually has to take place within 6 months of the previous treatment.

Bri

User
Posted 17 Oct 2015 at 20:00

Hi Keith,

My local support group had a recent talk from an onco who had been in at the start of the Stampede trials fifteen years ago. Apparantly they had concluded RT was most useful where PCa had only spread to the pelvic lymph nodes, they had been trying to determine what treatments were most useful bearing in mind the spread of the disease . However as other posters have suggested, it's a question of getting as much info as possible and weighing up the options for your individual case. Very best of luck,

 

Fiona.

User
Posted 18 Oct 2015 at 01:23

Hi Keef,

I would just add one note of caution, the mountain bike.

I am far from an expert in this field, and mostly physical exercise is supposed to be very good for us, both at warding off the cancer and at minimising the side effects of treatment, but somewhere in the back of my mind there have been posts on here in the past warning of the dangers of cycling, the saddle putting physical pressure on the prostate etc.

Indeed I had a friend, who was a very keen cyclist, not mountain bikes but time trials on the roads etc, and he died young from PCa.

I suggest it might be something you could research, because I am far from sure of my facts, but in the back of my mind I have read of links between racing saddles and prostate cancer. 

:)

Dave

User
Posted 18 Oct 2015 at 10:04

Hi Keith I have had adjuvant RT and had very small side effects going back on incontinence slightly which is back to normal know, my PSA has been undetectable since op last Dec I could not decide my wife & daughter decided they said prevention is better than cure and consultant thought at the moment this had the edge but the jury was still out, good luck with your decision all the best Andy

User
Posted 18 Oct 2015 at 20:10

There are two separate issues around cycling.

1) Competitive and very keen cyclists have a raised PSA but seem to have no increased risk of getting prostate cancer so it is advised that if a man has raised PSA and is a regular cyclist, he should advise the specialist before deciding whether or not to go ahead with a biopsy as the (bit) higher than average PSA is likely to be to do with the bike rather than a medical problem.

2) Men that have had surgery should avoid cycling for a time after the op as it is thought riding a bike could slow down or even prevent the nerve bundles from repairing and therefore making ED more likely to be permanent.

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

User
Posted 18 Oct 2015 at 20:13

Adjuvant treatment is usually an additional treatment that was either planned beforehand (as it was thought two treatments together would be more effective than one treatment on its own) OR where it is realised straight after the first treatment that something else is probably needed.

Salvage treatment is used where the first treatment was hoped to have worked but it later becomes clear that it hadn't done the job.

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

User
Posted 18 Oct 2015 at 20:19

I wish I'd known the bit about riding a bike after the op !! Obvious I suppose as it was a tad sore. Little did I know :-/

 
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