I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Diagnosed yesterday 31.5.2016

Email this conversation Print this conversation
User
Posted 01 Jun 2016 at 21:56
Hi,

Im typing on behalf of my husband, he's not much of a typist! He was diagnosed with prostate cancer yesterday, it's a shock. It's a Gleason 6 (3+3) which I know is good, for want of a better word, because I've been reading this forum and trawling the net. He's Afro/Caribbean and I have heard this cancer is more prolific in black men. Is it more aggressive? Does anyone know? He's already decided on op to remove as it's contained although the image on the MRI isn't clear so that was a bit worrying, the consultant said it was blurry and difficult to pinpoint the site of the cancer but he was confident it was contained. David will read this so please feel free to talk directly to him, he's 55 and he's being very strong about it all, as I am...so far but it's still very surreal. Anyone who has had the op offer any advice. We live in London so are fortunate that he will be treated at Guys by the UKs top surgeon apparently, he does 6-7 ops a week so that's reassuring. Any advice or questions we should be asking.

Thank you so much in anticipation of your response.

Carmel & David x

User
Posted 02 Jun 2016 at 07:52

Hello Carmel and David and welcome to the site.

3+3 is GOOD as you say so be encouraged by that.

If he has already made up his mind for the op, having weighed up the pros and cons of all treatments then at least he won'rt be agonising as to what you want to do. Your chosen surgeon does 6-7 ops week which is good. Have you asked about his success rate?

Is he going to save nerve bundles (as he is convinced the cancer is contained). Please ask the question.  If it's contained and not anywhere near then he should be able to do it and it makes a difference later for ED.

Have you downloaded or looked at the Toolkit available from the site's publication section? Lots of info there re: ops, effects etc

That initial diagnosis of Prostate cancer is grim and frightening and has been for all of us because, whatever stage cancer we have, we've all been where you are now.

You will find help and support as well as information on here so please ask away anything you want to know, no matter how personal.

Look at Trevor Boothes profile as another Afro/Caribbean. Not the same situation as yours by any stretch of the imagination but perhaps you could ask Julie if you want information regarding ethnicity and aggression of prostate cancer. I am sure she will answer questions for you if you ask, but please remember Trevor's situation is completely different and was from the start

Best Wishes in the meantime and I'm sure others will be along soon

Sandra

Edited by member 02 Jun 2016 at 07:57  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2016 at 15:27

Hi,

The psychological side is tough. Copying strategies are needed. These are mine.

1. I have three types of emotion: fear, anger and sadness. My strategy is simple to acknowledge which box I am  (it may be more than one). I spend most time in the sadness box. It helps to tell  your partner eg  "I feel angry this morning".

2. The other part of the strategy is to tell myself its not my fault its the Zoladex or whatever. Zoladex is famous for causing sadness/depression. But saying its the Zoladex opens a escape route from the dark place.

Courage to you both

 

Otto

 

 

  

 

 

 

 

 

User
Posted 02 Jun 2016 at 21:26

My OH is 55 this year, Gleason (3+3)6, just had his MRI scan in Tuesday, awaiting results before he decides what treatment to have, will follow your posts with interest, best wishes to you both

User
Posted 02 Jun 2016 at 23:23
Hello Carmel and David

Firstly I am 67 and so older and I had a radical prostectomy last August. I was warned about the possibility of post op incontinence and once the catheter was removed I had very little bladder control. I was prepared for this and so just dealt with it day to day and by January was back in control. It is major surgery and it will take a few weeks to recover from it. You need to be sure that you understand and can handle the risk of ED, particularly at your age. The other risk is that with the best surgeon in the world there is still a risk that post op there could be cells left. This may be less likely with a low Gleason score but it is possible. This has happened to me but I am now half way through RT to try to finish them off. No point in getting upsetabout any of this as it is just life and you need to be pragmatic about it. There is plenty of help and advice but post op you have to develop a new normal for as long as it takes. Easier for me as I am retired but it has not stopped me continuing to do everything that I have been doing before. It has not always been easy but there has always been a way.

All the best

Kevan

User
Posted 03 Jun 2016 at 00:28
Hi Carmel and David,

Welcome to the club that no wants to join, Trevor is afro Caribbean and yes the incidence is higher I have never heard that it can be more aggressive. 1 in 3 Afro Caribbean men will get PCa and around 1 in 8 Caucasian men. Trevor has 3 brothers that have also had it they are half brothers and all had very different upbringings one lived in Jamaica and 2 in Switzerland so all having different diets and lifestyles.

Trevor was terminal on diagnosis it had already spread to his bones having said that it was 3 years ago and he is still here and feeling well, he went last weekend with our 2 sons and his nephew to Santa pod. (see my thread to get the full story).

If you click on individual people's avatars there bio will come up and you can get there full history of diagnosis and treatments.

I know you are probably terrified at the moment ( been there got the T shirt) 3+3 Gleason is very treatable and curable on the forum it is affectionately termed being in the cure camp.

OK so some of the treatments are quite invasive and yes there are side affects ,with a 3+3 Gleason you should have most if not all options open to you.

It is early days for you both to get your heads around this , it takes time to find your new normal it certainly did for us and then there is the whole new learning the lingo experience.

The word Cancer is I think one of the most terrifying words that anyone can hear, keep posting if it helps .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
Show Most Thanked Posts
User
Posted 02 Jun 2016 at 07:52

Hello Carmel and David and welcome to the site.

3+3 is GOOD as you say so be encouraged by that.

If he has already made up his mind for the op, having weighed up the pros and cons of all treatments then at least he won'rt be agonising as to what you want to do. Your chosen surgeon does 6-7 ops week which is good. Have you asked about his success rate?

Is he going to save nerve bundles (as he is convinced the cancer is contained). Please ask the question.  If it's contained and not anywhere near then he should be able to do it and it makes a difference later for ED.

Have you downloaded or looked at the Toolkit available from the site's publication section? Lots of info there re: ops, effects etc

That initial diagnosis of Prostate cancer is grim and frightening and has been for all of us because, whatever stage cancer we have, we've all been where you are now.

You will find help and support as well as information on here so please ask away anything you want to know, no matter how personal.

Look at Trevor Boothes profile as another Afro/Caribbean. Not the same situation as yours by any stretch of the imagination but perhaps you could ask Julie if you want information regarding ethnicity and aggression of prostate cancer. I am sure she will answer questions for you if you ask, but please remember Trevor's situation is completely different and was from the start

Best Wishes in the meantime and I'm sure others will be along soon

Sandra

Edited by member 02 Jun 2016 at 07:57  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2016 at 15:27

Hi,

The psychological side is tough. Copying strategies are needed. These are mine.

1. I have three types of emotion: fear, anger and sadness. My strategy is simple to acknowledge which box I am  (it may be more than one). I spend most time in the sadness box. It helps to tell  your partner eg  "I feel angry this morning".

2. The other part of the strategy is to tell myself its not my fault its the Zoladex or whatever. Zoladex is famous for causing sadness/depression. But saying its the Zoladex opens a escape route from the dark place.

Courage to you both

 

Otto

 

 

  

 

 

 

 

 

User
Posted 02 Jun 2016 at 21:26

My OH is 55 this year, Gleason (3+3)6, just had his MRI scan in Tuesday, awaiting results before he decides what treatment to have, will follow your posts with interest, best wishes to you both

User
Posted 02 Jun 2016 at 22:00
Hi all,

Thanks so much for your help and for taking the time to respond. We will take your advice, it's helpful to hear people who are really experiencing this and who take the time to be so supportive. I'm already tired of people telling me about a friend of a friend who lived for 30 years without treatment etc, it makes me a bit cross and I don't know why because I'm sure they mean well. I feel like they are not acknowledging the impact this will have on my husbands future life, his sense of self - they just aren't informed or aware of the possible consequences of this disease post op even with a cure for the cancer itself. We are mainly being really positive but I may be in danger of misdirecting my anger...I didn't think I was angry until I re read this!

Carmel x

User
Posted 02 Jun 2016 at 23:23
Hello Carmel and David

Firstly I am 67 and so older and I had a radical prostectomy last August. I was warned about the possibility of post op incontinence and once the catheter was removed I had very little bladder control. I was prepared for this and so just dealt with it day to day and by January was back in control. It is major surgery and it will take a few weeks to recover from it. You need to be sure that you understand and can handle the risk of ED, particularly at your age. The other risk is that with the best surgeon in the world there is still a risk that post op there could be cells left. This may be less likely with a low Gleason score but it is possible. This has happened to me but I am now half way through RT to try to finish them off. No point in getting upsetabout any of this as it is just life and you need to be pragmatic about it. There is plenty of help and advice but post op you have to develop a new normal for as long as it takes. Easier for me as I am retired but it has not stopped me continuing to do everything that I have been doing before. It has not always been easy but there has always been a way.

All the best

Kevan

User
Posted 03 Jun 2016 at 00:28
Hi Carmel and David,

Welcome to the club that no wants to join, Trevor is afro Caribbean and yes the incidence is higher I have never heard that it can be more aggressive. 1 in 3 Afro Caribbean men will get PCa and around 1 in 8 Caucasian men. Trevor has 3 brothers that have also had it they are half brothers and all had very different upbringings one lived in Jamaica and 2 in Switzerland so all having different diets and lifestyles.

Trevor was terminal on diagnosis it had already spread to his bones having said that it was 3 years ago and he is still here and feeling well, he went last weekend with our 2 sons and his nephew to Santa pod. (see my thread to get the full story).

If you click on individual people's avatars there bio will come up and you can get there full history of diagnosis and treatments.

I know you are probably terrified at the moment ( been there got the T shirt) 3+3 Gleason is very treatable and curable on the forum it is affectionately termed being in the cure camp.

OK so some of the treatments are quite invasive and yes there are side affects ,with a 3+3 Gleason you should have most if not all options open to you.

It is early days for you both to get your heads around this , it takes time to find your new normal it certainly did for us and then there is the whole new learning the lingo experience.

The word Cancer is I think one of the most terrifying words that anyone can hear, keep posting if it helps .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jun 2016 at 10:33

Whapon,

Carmel and David,

Gutted your in the same boat as us chappies on here, but welcome all the same.

I was 47 Last year and diagnosed with PC Gleason 7, had it removed and still going strong.

Iv posted some of my experience on here, but it is also quite an journey, this is defiantly the right place for advice.

Good luck, keep strong

Johny

User
Posted 19 Jun 2016 at 18:24

Hi Kevan,

I'm about the same age as you and also retired. Went to the hospital last Thursday for biopsy result and and the news was not good. Stage 2 Intermediate cancer whatever that means, lol.  Anyway, it was all explained to me and my wife.  I'm to have an MRI scan as soon as the damage from the biopsy has cleared up.  Apparently, the cancer is impinging on a nerve or something so surgery has been recommended.  I don't really fancy six months of hormone treatment anyway.

I was told that the MRI scan will probably be within a couple of weeks with the op about  four weeks after that.

So, I'm looking for information from anyone who can help me.  I'm not exactly "scared" but I'm not exactly looking forward to what's going to happen and would be grateful for any support for myself and my wife.

My Gleason score was 3+4 and PSA of 8.5 so it looks like "goodbye prostate", lol.

Glad everything is going well for you and I hope it's the same for me.

Kind regards

 

Dave

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK