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51 Diagnosed T3A Rock Hard Place and Cliff

User
Posted 03 Jun 2014 at 20:47

Hi All

Not happy to be a member of this club but pleased to see how much support is offered.

Having been diagnosed with PC'a PSA 9.8 4+3 T2 I was after discussion with the Urologist and Oncologist all set to go down the brachytherapy route due to an existing heart problem.

Following an MRI scan however I have now been re-classified as a T3a due to diffuse capsular abutment and 

Today I had an appointment with the Onocologist who told me he thought that Surgery might be my best option but that I would almost certainly end up being impotent due to the nerves running around the capsule.

We discussed Radiotherapy with hormone therapy again the chances are that I would end up impotent and he did not think I should follow this course as because of being T3a I would probably need a dose that would possibly effect my bladder and bowel.

Brachytherapy is a possible option though again the chances are because of the capsular abutment the amount of radiation required would probably in his word fry the nerves.

So here I am at 51 happily married with an upset wife trying to think of some positives :-(

Tony

 

User
Posted 03 Jun 2014 at 22:27

Oh Tony so sorry you have to come here. I am by no means the most experienced person on here and I am sure there will be others along in time to offer advice. All I can do is tell you my husband's story and urge you and your wife to remain positive.

This horrible disease can have many twists and turns but I have found the time after diagnosis to be the blackest period when there is so much uncertainly and fear especially when you are faced with what may seem impossible choices. Once the treatment option is decided upon you will find the mist lifts and you move to the next stage.

My husband was diagnosed last year, aged 53, we were only married 2 years and he is the love of my life. It was a real bolt from the blue. He had no symptoms and had never had a day sick in his working life.

We were offered surgery, brachy, RT and HT. His view was just to get rid. I was worried about nerve sparing, but to be honest if it came to it, I would rather have him alive. He had surgery in October, which was pretty tough, followed by additional surgery for stenosis. He has just finished 37 sessions of RT and is on HT for 2 years, mainly due to positive margins after surgery.

Apart from time off after surgery he has continued working. I don't know what has kept him going, but he has kept me going with his positive attitude and focus to get better. Sure he has had all the side effects going, he is taking Viagra and whilst our sex life has now got to be planned in advance..we make up for it in other ways and it has brought us closer

I guess my point is to stay positive and to take every day as it comes, you may or may not get all the side effects, you may or may not have nerve sparing if you opt for surgery. You may have to have RT after surgery. We thought a clean cut would be the end of it

There are many options, do your homework, take your time before you make any decision. Talk to more people on here, look up their profiles and you will see there are many outcomes and it is not always doom and gloom..

(Hope that wasn't too rambling.. good luck,, others will be along soon )

 

User
Posted 03 Jun 2014 at 22:42

Tony

 

You're still in the "curable" camp so concentrate on that - there are no erections in the graveyard http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

 

I'm a G7 with spread (so incurable) but heading for 7 years post diagnosis. I too, was 51 at diagnosis and it has not been easy but there is a lot of support out there and we can help you through this http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

 

Death tends to be permanent and I would advise you to avoid it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 03 Jun 2014 at 23:15
After only 2 years of marriage, I thoroughly understand your concerns. However, treatment now will prolong your lives together. Where would you be in 3/4 years without the diagnosis? Life is precious, and solutions will be found that will enable you to enjoy a meaningful sex life.

I am off to see my GP re ED on Friday following an RP 8 weeks ago. The thought of 20 more years of life rather than what might have been for me makes it all worth while. I'll deal with the incontinence and ED much more readily than not being here!

Stay positive and you will get through this. Treat the negatives as problems to be solved and try not to let them get you down.

Paul

Stay Calm And Carry On.
User
Posted 04 Jun 2014 at 00:49
You don't know that impotence is a certainty with the surgery option until you meet with the surgeon. Your onco can't know whether the surgeon would or would not offer nerve-sparing surgery so my guess is that he was simply running through the worst case scenarios for you. Go see a surgeon before you make your mind up one way or the other.

If you must have non nerve sparing, it is true that you wouldn't be able to get natural erections and viagra wouldn't help. But there are treatments that work without the nerves, and still plenty of ways to have a good sex life without penetration.

RT does not automatically cause impotence and when it does, it is usually many years later rather than immediate. If you have hormone treatment with the RT, this can kill your libido but not all men are affected this way.

My husband was 50 at dx and really struggled with the impotence for a long time afterwards, so much so that he has often said that he wishes he had refused treatment and taken his chances. At 45 I can't say I was too thrilled at the prospect of a lifetime without intimacy but that is just not how it necessarily needs to be. He is fully recovered and doesn't really need the ED tablets & injections any more. The flip side of that is my father-in-law who refused treatment because he was unhappy at the prospect of no sex - he lived for only 4 years.

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

User
Posted 04 Jun 2014 at 18:01

Hi Tony,

 

Firstly, I'd be inclined to clarify if the surgeon could spare the nerves on one side - as you mention T3a which if accurate, is unilateral.

 

You have a chance at full cure as Allister has mentioned. This may entail aggressive treatment though with the 4+3 & T3a at your age. I was also 51 but  deemed incurable. That is the message to consider - that a price may be required for a long life ahead of you.

 

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User
Posted 03 Jun 2014 at 22:27

Oh Tony so sorry you have to come here. I am by no means the most experienced person on here and I am sure there will be others along in time to offer advice. All I can do is tell you my husband's story and urge you and your wife to remain positive.

This horrible disease can have many twists and turns but I have found the time after diagnosis to be the blackest period when there is so much uncertainly and fear especially when you are faced with what may seem impossible choices. Once the treatment option is decided upon you will find the mist lifts and you move to the next stage.

My husband was diagnosed last year, aged 53, we were only married 2 years and he is the love of my life. It was a real bolt from the blue. He had no symptoms and had never had a day sick in his working life.

We were offered surgery, brachy, RT and HT. His view was just to get rid. I was worried about nerve sparing, but to be honest if it came to it, I would rather have him alive. He had surgery in October, which was pretty tough, followed by additional surgery for stenosis. He has just finished 37 sessions of RT and is on HT for 2 years, mainly due to positive margins after surgery.

Apart from time off after surgery he has continued working. I don't know what has kept him going, but he has kept me going with his positive attitude and focus to get better. Sure he has had all the side effects going, he is taking Viagra and whilst our sex life has now got to be planned in advance..we make up for it in other ways and it has brought us closer

I guess my point is to stay positive and to take every day as it comes, you may or may not get all the side effects, you may or may not have nerve sparing if you opt for surgery. You may have to have RT after surgery. We thought a clean cut would be the end of it

There are many options, do your homework, take your time before you make any decision. Talk to more people on here, look up their profiles and you will see there are many outcomes and it is not always doom and gloom..

(Hope that wasn't too rambling.. good luck,, others will be along soon )

 

User
Posted 03 Jun 2014 at 22:42

Tony

 

You're still in the "curable" camp so concentrate on that - there are no erections in the graveyard http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

 

I'm a G7 with spread (so incurable) but heading for 7 years post diagnosis. I too, was 51 at diagnosis and it has not been easy but there is a lot of support out there and we can help you through this http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

 

Death tends to be permanent and I would advise you to avoid it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 03 Jun 2014 at 23:15
After only 2 years of marriage, I thoroughly understand your concerns. However, treatment now will prolong your lives together. Where would you be in 3/4 years without the diagnosis? Life is precious, and solutions will be found that will enable you to enjoy a meaningful sex life.

I am off to see my GP re ED on Friday following an RP 8 weeks ago. The thought of 20 more years of life rather than what might have been for me makes it all worth while. I'll deal with the incontinence and ED much more readily than not being here!

Stay positive and you will get through this. Treat the negatives as problems to be solved and try not to let them get you down.

Paul

Stay Calm And Carry On.
User
Posted 04 Jun 2014 at 00:49
You don't know that impotence is a certainty with the surgery option until you meet with the surgeon. Your onco can't know whether the surgeon would or would not offer nerve-sparing surgery so my guess is that he was simply running through the worst case scenarios for you. Go see a surgeon before you make your mind up one way or the other.

If you must have non nerve sparing, it is true that you wouldn't be able to get natural erections and viagra wouldn't help. But there are treatments that work without the nerves, and still plenty of ways to have a good sex life without penetration.

RT does not automatically cause impotence and when it does, it is usually many years later rather than immediate. If you have hormone treatment with the RT, this can kill your libido but not all men are affected this way.

My husband was 50 at dx and really struggled with the impotence for a long time afterwards, so much so that he has often said that he wishes he had refused treatment and taken his chances. At 45 I can't say I was too thrilled at the prospect of a lifetime without intimacy but that is just not how it necessarily needs to be. He is fully recovered and doesn't really need the ED tablets & injections any more. The flip side of that is my father-in-law who refused treatment because he was unhappy at the prospect of no sex - he lived for only 4 years.

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

User
Posted 04 Jun 2014 at 18:01

Hi Tony,

 

Firstly, I'd be inclined to clarify if the surgeon could spare the nerves on one side - as you mention T3a which if accurate, is unilateral.

 

You have a chance at full cure as Allister has mentioned. This may entail aggressive treatment though with the 4+3 & T3a at your age. I was also 51 but  deemed incurable. That is the message to consider - that a price may be required for a long life ahead of you.

 

User
Posted 04 Jun 2014 at 19:15

Hi Rob

Thanks for the message sorry to hear that you are in the incurable camp.

I think I was just shocked I had got it into my mind that brachytherapy was the way forward for me and that I would sail through it!

Naivety on my part. 

You are totally right there are no erections in the graveyard and now I have had time to calm down and think about things I would much rather be alive then dead. In fact I am starting to realise how lucky I am I have a wife that loves and supports me I have friends and work mates that are routing for me. 

I am of to see the urologist tomorrow and hopefully he might be able to save something however if he can't I will learn to live with it. 

I am lucky in so many ways

All the best 

 

Tony

 

User
Posted 05 Jun 2014 at 18:12

Hi Tony

Both my erection nerves were both removed with the prostate and nearly all of the cancer and I am unlikely to ever have a spontaneous erection again. But I am fit healthy and above all alive and able to see my kids grow up, what is more every undetectable I get brings me closer to getting a long term remission. 

In a way it is lucky I am on ADT as I have lost all interest anyway! It will be interesting to see what happens next year I come off it!

Best wishes and good luck with your cancer journey

Batholith

 

 

User
Posted 05 Jun 2014 at 19:14
Hi Tony,

I had just turned 54 when I was diagnosed with a T4 tumour with spread to seminal vesicles, pelvic wall and floor.

My only real option was Hormone therapy and 37 x Radiotherapy sessions. That was back in 2005 and I've come through OK so far.

I take regular breaks from treatment, only returning when PSA rises too high for my liking.

I was very lucky in that there was no spread to bones or lymph nodes.despite the late diagnosis.

If you click on my Avatar you'll see my full history over the past nine years.

Good luck,

George

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User
Posted 05 Jun 2014 at 19:28

Hi Tony,

 

An MG owner? I have an MGC GT and intend to enjoy it for many years to come. I was told by my Oncologist that nerve sparing surgery was not possible for me. I eventually had my operation performed by a different surgeon who felt that he could spare nerves on one side. Not the full shilling yet but there are definite signs 5 weeks after surgery.

 

Keep your chin up and think positively.

 

Steve

User
Posted 05 Jun 2014 at 21:25
8 weeks on and not a glimmer, despite a lot of encouragement. Hope my GP is in a sympathetic mood in the morning when I ask for a pump and cialis!
Stay Calm And Carry On.
 
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