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User
Posted 01 Aug 2016 at 11:41

Hi to everyone

Just to introduce myself. Real name Howard (67yo), and diagnosed with PCa on Friday 29 Aug. Obviously this is a new experience for me just like everyone else, so apologies if I repeat things that others have posted before me.

Gleeson score was 7 (3+4) and the consultant was first class in explaining my options. He said I've got 3 options. 1) Do nothing and watch, 2) Radiotherapy everyday for 7 weeks, 3) Radical Prostatectomy. Obviously I had a lot to take on that day, but reading the Guide book it seems I have T2.

After having read up a bit more it seems after Radio, surgery is not usually an option, plus other organs can be damaged if you are unlucky. This happened to a friend of mine some years ago, so I suppose my question is to try and get a feeling for other sufferers opinions on the surgery/removal option. My feelings are that if after radio at some later stage the cancer (sorry to use that word) returns, the whole process undertaken till now, starts all over again, with the option for surgery out of the equation. Like everyone else I suspect, I did NOT enjoy the biopsy....! I would very much appreciate any members/wives who have taken the surgery route and their experiences during and since.

I have other friends who have had this as well as some who are still being treated and have had bad experiences, although I'm not sure why on that point till I summon the courage to call them. Feeling a bit emotional at the moment as I'm sure others understand.

Sincere thanks to all for reading and any responses are very welcome indeed.

May the Force be with you, always.

Howard

Edited by member 01 Aug 2016 at 14:02  | Reason: Not specified

User
Posted 01 Aug 2016 at 13:58

Hiya,

I had surgery earlier this year - click on my profile for more information.

I have also sent you a private message.

Hope all goes well for you

KRO..

User
Posted 01 Aug 2016 at 14:37

Hi Howard

A few points for you.

Call your friends and get the full picture such as erectile dysfunction and incontenance which is far more common via surgery than RT ( Radio Therapy).

Some surgery guys need RT afterwards.

Salvage RT is coming on line more nowadays.

I had Radio Therapy and Hormone Therapy.

Ray

User
Posted 01 Aug 2016 at 15:51

Howard welcome to this site and now the hard bit starts as it is only you that can decide which way to go for treatment.

My scores were exactly the same as yours Gleason 3+4=7, T2, with PSA 63. My options were only HT for twenty four months and RT after three months(ended up being seven months due to unforeseen emergency op) I could not have a RP as prostate was too close to rectum wall. Finished RT Nov last year and for the last three blood tests my PSA has been undetectable at 0.01.

With hind sight and if RP had been offered to me I would still have gone down the route that I had no other option on. My reasons being that I did not want to risk the incontinence issue or the ED ones either, I know there are ed problems with HT but they are treatable with drugs and mechanical aides and also my labido will return after ending HT.

I also would have been prepared to take a chance on PCa returning eventually(as it does sometimes even if you have a RP)

This is my view only and I am sure there are others on here that would say going down the RP route was a good thing for them. I would talk with the people that you know that have already been there themselves to get "their take on it" but don't forget that it is your choice so get as much information as you can before making it.

I wish you well, regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 01 Aug 2016 at 15:52  | Reason: Not specified

User
Posted 01 Aug 2016 at 17:35

Hi welcome to our group I have had RP open surgery followed with adjuvant RT my PSA was undetectable after RP but had positive margins
and was offered wait and see go on trial or RT. .18 months on my PSA is still undetectable I do not have any incontinence issues but do have ED , my gleason score was the same as yours with a psa of 5.7 . I do feel fit and well and life is pretty good .
all the best Andy

Edited by member 01 Aug 2016 at 17:36  | Reason: Not specified

User
Posted 01 Aug 2016 at 18:26
Hi and welcome to the site.Click on my picture and read my profile for my experience. I am afraid that it will be September before I get my latest results. All I can say is that I have no regrets about any of the treatment decisions so far but I await my next results with interest. There have been difficult days along the way but I am over them and just crack on. I have found that by facing things square on armed with the experiences of the great people on this site I feel good and just had to adjust things a bit. Everyone deals with things differently but for me the cancer was not a shock so I have not had to deal with any trauma related to it. I wish you well whatever you choose to do but take in the varying experiences on this site and virtually nothing will then take you by surprise as you will be prepared for most eventualities.

Kevan

User
Posted 01 Aug 2016 at 19:29
Hi and welcome from me,

You've been diagnosed and you have to make a decision as which route to take , surgery or radiotherapy? Conflicting advice abounds and we each have our opinions and experiences to offer to confuse you further !

So here goes for me, T3a , Psa 33.5 , Gleason 5+4+3 . Local spread to lymph nodes and seminal vesicle - Age 57 upon diagnosis.

I could not have surgery but I am on HT and had 37 sessions of RT. I have not had any Incontinence problems, nor had to wear any pads nor bags during or post treatment but have had hot flushes, no libido, fatigue and teariness , which should cease after I finish HT. There were very short lived bowel and urinary issues during RT treatment. Again there are current ED issues which are being addressed ( which affects most men in some form or another whichever treatment choice they make) and should rectify after HT ceases. Like many on this site I have had some very difficult days to contend with, but I'm sure I'm through the worst now.

My 18 month post RT Psa reading as of last week, showed as completely undetectable, and can only be recorded as <0.1. It took some time achieve this result but I am delighted with the treatment I received and this latest result obtained . My oncologist made me aware though that there is still the risk of recurrence and I must not become complacent.

I have a friend who had RP and is now awaiting confirmation of salvage treatment, following upward Psa levels over the past 2 years following surgery. He is now asking me what's it like to have HT and RT. As he says, he's lucky to have this further option.

Good luck with your decision and travels with this disease,

John

User
Posted 01 Aug 2016 at 20:21

Hi Howard,

Yes there are risks to all treatments but there can also be risks doing nothing. For some men, where their PCa is discovered at an early stage, there is the option of taking no immediate action but just being monitored. This can be an option if you have nerves of steel and timely active treatment is given if required. On diagnosis, I had the same Gleason score as you with lower PSA score of17.6 (the least accurate indicator). However, my staging was T3A indicating that some cancer cells were in the process of breaking out of the capsule. This meant my urologist considered it rather too late for surgery to remove all the cancer so, I was recommended the HT/RT option. If only my cancer had been discovered when it T2 and contained!!

Remember, a few friends and acquaintances will relate their experiences which may not be truly representative of those generally but in any case your experience may be towards the end of the spectrum.

If you have not done so already, I suggest you might find it helpful to obtain the 'Toolkit' from publications section on the main part of this charity.

Barry
User
Posted 03 Aug 2016 at 15:23
Hi Howard,

I opted for open rp, 5 months ago now, and have no regrets. Feeling quite good at the moment although can get tired some afternoons if I do too much. Incontinence only lasted a couple of days but ED is still an ongoing issue although improving week by week ( I am under no illusions that it may take some time). Please take a look at my profile for a bit more info. Any questions please feel free to ask. Best wishes for whichever route you decide on.

Cheers

AL

Show Most Thanked Posts
User
Posted 01 Aug 2016 at 13:58

Hiya,

I had surgery earlier this year - click on my profile for more information.

I have also sent you a private message.

Hope all goes well for you

KRO..

User
Posted 01 Aug 2016 at 14:07

Thank you KRO. Don't seem to have received the PM yet? Maybe it takes time to arrive?

User
Posted 01 Aug 2016 at 14:37

Hi Howard

A few points for you.

Call your friends and get the full picture such as erectile dysfunction and incontenance which is far more common via surgery than RT ( Radio Therapy).

Some surgery guys need RT afterwards.

Salvage RT is coming on line more nowadays.

I had Radio Therapy and Hormone Therapy.

Ray

User
Posted 01 Aug 2016 at 15:07

Thank you Ray. I will take that on board. I just need a crystal ball.

User
Posted 01 Aug 2016 at 15:51

Howard welcome to this site and now the hard bit starts as it is only you that can decide which way to go for treatment.

My scores were exactly the same as yours Gleason 3+4=7, T2, with PSA 63. My options were only HT for twenty four months and RT after three months(ended up being seven months due to unforeseen emergency op) I could not have a RP as prostate was too close to rectum wall. Finished RT Nov last year and for the last three blood tests my PSA has been undetectable at 0.01.

With hind sight and if RP had been offered to me I would still have gone down the route that I had no other option on. My reasons being that I did not want to risk the incontinence issue or the ED ones either, I know there are ed problems with HT but they are treatable with drugs and mechanical aides and also my labido will return after ending HT.

I also would have been prepared to take a chance on PCa returning eventually(as it does sometimes even if you have a RP)

This is my view only and I am sure there are others on here that would say going down the RP route was a good thing for them. I would talk with the people that you know that have already been there themselves to get "their take on it" but don't forget that it is your choice so get as much information as you can before making it.

I wish you well, regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 01 Aug 2016 at 15:52  | Reason: Not specified

User
Posted 01 Aug 2016 at 17:35

Hi welcome to our group I have had RP open surgery followed with adjuvant RT my PSA was undetectable after RP but had positive margins
and was offered wait and see go on trial or RT. .18 months on my PSA is still undetectable I do not have any incontinence issues but do have ED , my gleason score was the same as yours with a psa of 5.7 . I do feel fit and well and life is pretty good .
all the best Andy

Edited by member 01 Aug 2016 at 17:36  | Reason: Not specified

User
Posted 01 Aug 2016 at 18:11

Sincere thanks Chris/Woody and Teddy for your replies and kind support. They are much appreciated. I am about to start the 'journey' and any advice or comments are very welcome. There do seem to be risks and side effects with most of the treatments. Thanks to all once again. I'm sure I'll be back for more....

User
Posted 01 Aug 2016 at 18:26
Hi and welcome to the site.Click on my picture and read my profile for my experience. I am afraid that it will be September before I get my latest results. All I can say is that I have no regrets about any of the treatment decisions so far but I await my next results with interest. There have been difficult days along the way but I am over them and just crack on. I have found that by facing things square on armed with the experiences of the great people on this site I feel good and just had to adjust things a bit. Everyone deals with things differently but for me the cancer was not a shock so I have not had to deal with any trauma related to it. I wish you well whatever you choose to do but take in the varying experiences on this site and virtually nothing will then take you by surprise as you will be prepared for most eventualities.

Kevan

User
Posted 01 Aug 2016 at 19:29
Hi and welcome from me,

You've been diagnosed and you have to make a decision as which route to take , surgery or radiotherapy? Conflicting advice abounds and we each have our opinions and experiences to offer to confuse you further !

So here goes for me, T3a , Psa 33.5 , Gleason 5+4+3 . Local spread to lymph nodes and seminal vesicle - Age 57 upon diagnosis.

I could not have surgery but I am on HT and had 37 sessions of RT. I have not had any Incontinence problems, nor had to wear any pads nor bags during or post treatment but have had hot flushes, no libido, fatigue and teariness , which should cease after I finish HT. There were very short lived bowel and urinary issues during RT treatment. Again there are current ED issues which are being addressed ( which affects most men in some form or another whichever treatment choice they make) and should rectify after HT ceases. Like many on this site I have had some very difficult days to contend with, but I'm sure I'm through the worst now.

My 18 month post RT Psa reading as of last week, showed as completely undetectable, and can only be recorded as <0.1. It took some time achieve this result but I am delighted with the treatment I received and this latest result obtained . My oncologist made me aware though that there is still the risk of recurrence and I must not become complacent.

I have a friend who had RP and is now awaiting confirmation of salvage treatment, following upward Psa levels over the past 2 years following surgery. He is now asking me what's it like to have HT and RT. As he says, he's lucky to have this further option.

Good luck with your decision and travels with this disease,

John

User
Posted 01 Aug 2016 at 20:21

Hi Howard,

Yes there are risks to all treatments but there can also be risks doing nothing. For some men, where their PCa is discovered at an early stage, there is the option of taking no immediate action but just being monitored. This can be an option if you have nerves of steel and timely active treatment is given if required. On diagnosis, I had the same Gleason score as you with lower PSA score of17.6 (the least accurate indicator). However, my staging was T3A indicating that some cancer cells were in the process of breaking out of the capsule. This meant my urologist considered it rather too late for surgery to remove all the cancer so, I was recommended the HT/RT option. If only my cancer had been discovered when it T2 and contained!!

Remember, a few friends and acquaintances will relate their experiences which may not be truly representative of those generally but in any case your experience may be towards the end of the spectrum.

If you have not done so already, I suggest you might find it helpful to obtain the 'Toolkit' from publications section on the main part of this charity.

Barry
User
Posted 02 Aug 2016 at 13:29

Thank you John. Much appreciated. Still trying to absorb it all and weigh up the odds. I'm still leaning towards RP while everything is contained.

User
Posted 02 Aug 2016 at 13:31

Thanks Barry. Have ordered Toolkit and made donation. I get the odd moment when I think, 'Is this a bad dream?' I'm sure I'm not the first.

Thanks again for your post and advice.

User
Posted 03 Aug 2016 at 15:23
Hi Howard,

I opted for open rp, 5 months ago now, and have no regrets. Feeling quite good at the moment although can get tired some afternoons if I do too much. Incontinence only lasted a couple of days but ED is still an ongoing issue although improving week by week ( I am under no illusions that it may take some time). Please take a look at my profile for a bit more info. Any questions please feel free to ask. Best wishes for whichever route you decide on.

Cheers

AL

User
Posted 03 Aug 2016 at 15:35

Thank you AL. Pleased to hear you are coping well and satisfied. All comments help and I've tended to stay away from posts that have produced problems for some chaps. I expect I'll get round to them in due course. Only had diagnosis 6 days ago, so still trying to adjust. We all think we're invincible don't we till something like this crops up?

 
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