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The news get worse with each hospital visit

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User
Posted 04 Jan 2017 at 21:09
Dear friends

Lots of you know my story. A 46 year old who took part by chance in a PSA screening event organised by the local Lions Club.

Today, I had my first post prostatectomy meeting with my urologist. I've been upgraded. From T3a to T3b. From Gleason 7 to Gleason 9. I think I've been positive and strong thus far. But this evening, I'm devastated. I feel like I've been handed a death sentence.

I see the oncologist next week.

W
User
Posted 06 Jan 2017 at 06:13

"I see in your eyes the same fear that would take the heart of me. A day may come when the courage of men fails, when we forsake our friends and break all bonds of fellowship, but it is not this day. An hour of wolves and shattered shields, when the age of men comes crashing down, but it is not this day! This day we fight!! By all that you hold dear on this good Earth, I bid you stand."


King Aragorn: Battle speech at the Black Gate.

User
Posted 05 Jan 2017 at 21:47
Hi hope you don't mind a wife replying !! OH still quiet and in denial I think , Gary was diagnosed Gleason 9(4+5) everything was a whilrl wind from start to finish ,every app was worse than the previous.no symptoms apart from 2 weeks before wee problems ,after Mri / bone scan / ct scan was told had spread to lymph nodes and para aorta nodes . Advised chemo was best option and also excepted for stampede trial arm j . 1 year on having gone through chemo and 6 months on trial Gary is still actively working a manual job (a bit slower than before ) but life goes on . We strongly believe positive thinking helps , i hope everything works out well for you ,
Best wishes ,keep positive
Debby
User
Posted 04 Jan 2017 at 22:02

Ulsterman, from one Gleason 9 to another, it just ain't so. My diagnosis was over nine years ago and I shall see lots more Christmases. You have your youth on your side and the fast developing pace of new treatments. Get yourself a positive mindset keep fit and make the most of the many years you have ahead of you.

AC in Leics (recently moved from Northants!)

User
Posted 04 Jan 2017 at 23:13

Hi Walter,


I can only echo AC's post, I too was Gleason 9 when first diagnosed in 2007.


The most astounding thing is the pace with which medical science is progressing, I have subsequently had treatment that was unheard of when I was first diagnosed.


Like all of us I still worry, my next PSA test is due on Friday, but 6 months ago, 9 years after a G9, T3a + T3b, N? diagnosis my PSA was a mere 0.2, not bad for someone who still has the remnants of a twice radiated prostate within him.  


So chin up and look forward to the future, lots of new treatments becoming available.


:)


Dave  

User
Posted 05 Jan 2017 at 02:40

Hi Walter,


Sorry to hear your news, it has come as a bit of the shock but try to stay calm.  


Hopefully you will have a clearer picture of what your situation is very soon when you get to see an oncologist.  You have been lucky that the cancer was discovered by the PSA test, as it's given you the best chance of dealing with it.  You may not feel that way just now but it's true.  I felt sorry for myself when I had a heart attack only two weeks after finishing Radiotherapy.  I felt so unlucky at that point and thought "why me" but then when I was told that I may have died within 12 months if my heart problems hadn't have been discovered, I felt very lucky indeed.


It's ok to feel sad, you've had to deal with a lot in recent months.  Remember, I'm not too far away if you want to chat.


Take care.


Steve


  


 


 


 

User
Posted 05 Jan 2017 at 06:53
Another G9, now 2 years on from diagnosis and still fine. PSA result yesterday 0.17 after chemo, RT and currently Abirateone.

You said in your post that it feels like a death sentence, that is exactly how I felt for a few months to be honest and then I read a post here ( apologies to the author but I don't remember who) who said for them it became a "live sentence". That resonated with me and stopped me seeing my time as one to be endured and made me instead live for every day. I would be lying if I didn't say I have a wobble now and again but 98% of the time I live and love life to the full.

In business there is a change process that we use, "storming, norming and performing,", you understandably right now are in the "storm", it will become the "norm "in your head when you know where you are and what is happening and then you will "perform " better than ever with the clarity of purpose that your situation (hopeless as you think it is right now) gives you. The last 12 months of my life have bizarrely been the best ever, please don't dispair even though right now I understand that you will be.

We are all rooting for you.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 Jan 2017 at 08:38

Good morning Walter,

Some wise words above, and I can not add anything new, only further reassurance.

Irun's analogy is succinct and relevant. Your "normal" is being adjusted. And you will get used to, and deal with your new "normal" wherever that settles.

My stats, my predicament is not as bad as many here, frankly it's not a competition I want to be winning. But for each of us who get unwelcome news it is our own abyss. Yours is worse than some, better than others. It is still your personal abyss so I can understand the dismay. But, you will deal with this news, and you will plan to give yourself the best chances.

Hope you are feeling a bit better this morning?

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 05 Jan 2017 at 12:38

Hi Ulsterman
I remember when my husband was first diagnosed a few months ago when we first saw the oncologist he said 'has it just been a series of appointments with each one giving worse news than the one before?'

And that's exactly what it was. It's all a bit of a bugger really (understatement !) but it does get easier to accept once you have a clear treatment path.

There are so many positive messages here to take hope from so soothe yourself with those - but I also think its important to allow yourself the time for the information to settle with you so don't beat yourself up about feeling knocked for six.

I hope you have a better day today x

User
Posted 05 Jan 2017 at 14:39
Barry

I shall book another trip - that always makes the world look like a better place.

Walter
User
Posted 06 Jan 2017 at 00:26
Dear Walter,
My OH is also G9 he was diagnosed last year. It has been one of the hardest years of our lives. He's had his treatments and is now on hormone therapy for three years, now about half way through. We have laughed cried and still do sometimes.
Although he's older than you, we are both young at heart types, love travelling, we've back packed around SE Asia, Greek islands and other places too.
Both of us have lived in different countries.

Our lives have changed, and we are adjusting our nom, I say 'we' as it has been a journey shared one we had no intention of taking.

We are beginning to look forward, we still have times of anger dispair and fear, but they are getting less.
David is beginning to work again, he's a musician, and he's looking at a new project... singing and playing every day.

We are planning our veg garden, we grow all our own veg. I'm beginning to do some more work I'm self employed too, and I've started some art projects.

Hey, we none of us know how long we have, this blasted illness has kicked our arses big time, and made us think.

This forum has give us great support hope and vision.... so many here have given us comfort and knowledge.

Book your trip, dear man, we are going away next week.

This blasted disease can't stop all our fun now can it.

Leila x


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User
Posted 04 Jan 2017 at 22:02

Ulsterman, from one Gleason 9 to another, it just ain't so. My diagnosis was over nine years ago and I shall see lots more Christmases. You have your youth on your side and the fast developing pace of new treatments. Get yourself a positive mindset keep fit and make the most of the many years you have ahead of you.

AC in Leics (recently moved from Northants!)

User
Posted 04 Jan 2017 at 22:05
Thanks AC. I just wasn't expecting that news today. I feel crushed tonight, but I will get my fight back. But not tonight.

Your story has helped me. Thank you.

W
User
Posted 04 Jan 2017 at 22:08

A referral to the oncologist sounds like a belt and braces approach. They may discuss the possibility of adjuvant RT.

Did you have a PSA test result?

Easy to say but try not to fret. T3b,as far as I am aware, can still be in the cure camp.

Bri

User
Posted 04 Jan 2017 at 22:12
Too soon after the op for a PSA test, Bri. I get that in two weeks. They've been pretty speedy here and did tell me because I'm young they would treat pretty aggressively.

W
User
Posted 04 Jan 2017 at 23:13

Hi Walter,


I can only echo AC's post, I too was Gleason 9 when first diagnosed in 2007.


The most astounding thing is the pace with which medical science is progressing, I have subsequently had treatment that was unheard of when I was first diagnosed.


Like all of us I still worry, my next PSA test is due on Friday, but 6 months ago, 9 years after a G9, T3a + T3b, N? diagnosis my PSA was a mere 0.2, not bad for someone who still has the remnants of a twice radiated prostate within him.  


So chin up and look forward to the future, lots of new treatments becoming available.


:)


Dave  

User
Posted 04 Jan 2017 at 23:35

Hi Walter


Sorry to hear the news but they are on it quickly and there are options. Stay positive, as the other G9ers have said.


Chris

User
Posted 05 Jan 2017 at 02:40

Hi Walter,


Sorry to hear your news, it has come as a bit of the shock but try to stay calm.  


Hopefully you will have a clearer picture of what your situation is very soon when you get to see an oncologist.  You have been lucky that the cancer was discovered by the PSA test, as it's given you the best chance of dealing with it.  You may not feel that way just now but it's true.  I felt sorry for myself when I had a heart attack only two weeks after finishing Radiotherapy.  I felt so unlucky at that point and thought "why me" but then when I was told that I may have died within 12 months if my heart problems hadn't have been discovered, I felt very lucky indeed.


It's ok to feel sad, you've had to deal with a lot in recent months.  Remember, I'm not too far away if you want to chat.


Take care.


Steve


  


 


 


 

User
Posted 05 Jan 2017 at 06:17

And from another G9; I'm still bouncing around 3.5 years after being diagnosed. When I was first diagnosed I thought I'd be dead by Christmas. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


As one of your Norn Iron colleagues, who is no longer with us, used to say:


"Nil desperandum".


If you want a bit of inspiration, have a look at his profile, name alathays, he was quite a guy.

User
Posted 05 Jan 2017 at 06:53
Another G9, now 2 years on from diagnosis and still fine. PSA result yesterday 0.17 after chemo, RT and currently Abirateone.

You said in your post that it feels like a death sentence, that is exactly how I felt for a few months to be honest and then I read a post here ( apologies to the author but I don't remember who) who said for them it became a "live sentence". That resonated with me and stopped me seeing my time as one to be endured and made me instead live for every day. I would be lying if I didn't say I have a wobble now and again but 98% of the time I live and love life to the full.

In business there is a change process that we use, "storming, norming and performing,", you understandably right now are in the "storm", it will become the "norm "in your head when you know where you are and what is happening and then you will "perform " better than ever with the clarity of purpose that your situation (hopeless as you think it is right now) gives you. The last 12 months of my life have bizarrely been the best ever, please don't dispair even though right now I understand that you will be.

We are all rooting for you.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 Jan 2017 at 07:11

And I'm 49 diagnosed Sep 2014 with. G9T4 N1 , locally advanced. It's likely I'm incurable and that is why I have twice rejected RT.
You've not told us whether there were surgical margins or lymph nodes removed etc. Breath in !!
All the support you need is here. My post op psa was the worst they had in 2 years. I so hope yours comes back ok
Chris

User
Posted 05 Jan 2017 at 07:32
Walter, I wrote the book on panic. Just look at my previous posts. Although not a G9 I am both incurable and very young so know exactly how you feel. It would be useful to have a full set of stats. Do not fear the word oncologist. They are not grim reapers but some are magicians whose knowledge of the disease is such that they can skilfully keep it at bay for many years and as another member said, new treatments and combination treatments are coming out all the time.

For you, now is the time to plan a new albeit unexpected treatment course. It is also the time to grab life by the balls and do everything you wanted to do before but never got around to. In some ways, although news of incurabilty or higher staging is devastating, it can also be life affirming once the initial shock has subsided. You WILL deal with this meeting, because quite frankly you have no choice but to deal with it. It is this courage that is hidden within us all and even surprises ourselves sometimes when faced with news we just weren't expecting or didn't want to hear.

Please do commit your thoughts, however dark, on here. There will be people with the knowledge and experience who know exactly what you're going through to help pick you up and offer a level of support you just cannot find elsewhere.

Good luck my friend. Stay strong.

Barry

Bazza

User
Posted 05 Jan 2017 at 08:38

Good morning Walter,

Some wise words above, and I can not add anything new, only further reassurance.

Irun's analogy is succinct and relevant. Your "normal" is being adjusted. And you will get used to, and deal with your new "normal" wherever that settles.

My stats, my predicament is not as bad as many here, frankly it's not a competition I want to be winning. But for each of us who get unwelcome news it is our own abyss. Yours is worse than some, better than others. It is still your personal abyss so I can understand the dismay. But, you will deal with this news, and you will plan to give yourself the best chances.

Hope you are feeling a bit better this morning?

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 05 Jan 2017 at 12:38

Hi Ulsterman
I remember when my husband was first diagnosed a few months ago when we first saw the oncologist he said 'has it just been a series of appointments with each one giving worse news than the one before?'

And that's exactly what it was. It's all a bit of a bugger really (understatement !) but it does get easier to accept once you have a clear treatment path.

There are so many positive messages here to take hope from so soothe yourself with those - but I also think its important to allow yourself the time for the information to settle with you so don't beat yourself up about feeling knocked for six.

I hope you have a better day today x

User
Posted 05 Jan 2017 at 13:30
Thank you all for your words of encouragement. Forgive my self-indulgence - I felt entitled to be angry, frustrated, sad etc last night. And then I think of the children and teenagers who get cancer, or those who live with chronic medical conditions or those who die in war and famine. I'm also more logical than I am emotional, so I know I can fight this thing and make the most of life. The daft thing is I don't feel ill. This disease plays with your mind, messes with your head.

I'll adjust to my new normal pretty soon. In the meantime, thank you all for your support.

Walter
User
Posted 05 Jan 2017 at 13:43
Walter, cancer in the early stages is 90% in the head. Get a hold on that and you will more easily deal further down the line, the line in your case being much longer than you presently think.

I do genuinely wish you well my friend. This is a horrible part of the, forgive the over used expression, "journey."

See that onco, know what will be happening then grab that life with both hands! My mantra had always been "all you need is now" for now is all we ever own.

Go well

Bazza
Barry


User
Posted 05 Jan 2017 at 14:39
Barry

I shall book another trip - that always makes the world look like a better place.

Walter
User
Posted 05 Jan 2017 at 15:17
Originally Posted by: Online Community Member
Barry

I shall book another trip - that always makes the world look like a better place.

Walter


Right on brother. I always find short city breaks are more easily affordable and less hassle on the insurance.
User
Posted 05 Jan 2017 at 21:47
Hi hope you don't mind a wife replying !! OH still quiet and in denial I think , Gary was diagnosed Gleason 9(4+5) everything was a whilrl wind from start to finish ,every app was worse than the previous.no symptoms apart from 2 weeks before wee problems ,after Mri / bone scan / ct scan was told had spread to lymph nodes and para aorta nodes . Advised chemo was best option and also excepted for stampede trial arm j . 1 year on having gone through chemo and 6 months on trial Gary is still actively working a manual job (a bit slower than before ) but life goes on . We strongly believe positive thinking helps , i hope everything works out well for you ,
Best wishes ,keep positive
Debby
User
Posted 05 Jan 2017 at 23:51
Dear Debby

The one thing that has lifted my spirits over the past 24 hours are the stories of the Gleason 9s who have taken the time to reply. I genuinely did see Gleason 9 as a death sentence. Tonight, I realise that isn't true. Nonetheless, it is a club I didn't ask to join.

Thanks for your post. It, along with the others, has restored my hope.

Walter
User
Posted 06 Jan 2017 at 00:26
Dear Walter,
My OH is also G9 he was diagnosed last year. It has been one of the hardest years of our lives. He's had his treatments and is now on hormone therapy for three years, now about half way through. We have laughed cried and still do sometimes.
Although he's older than you, we are both young at heart types, love travelling, we've back packed around SE Asia, Greek islands and other places too.
Both of us have lived in different countries.

Our lives have changed, and we are adjusting our nom, I say 'we' as it has been a journey shared one we had no intention of taking.

We are beginning to look forward, we still have times of anger dispair and fear, but they are getting less.
David is beginning to work again, he's a musician, and he's looking at a new project... singing and playing every day.

We are planning our veg garden, we grow all our own veg. I'm beginning to do some more work I'm self employed too, and I've started some art projects.

Hey, we none of us know how long we have, this blasted illness has kicked our arses big time, and made us think.

This forum has give us great support hope and vision.... so many here have given us comfort and knowledge.

Book your trip, dear man, we are going away next week.

This blasted disease can't stop all our fun now can it.

Leila x


User
Posted 06 Jan 2017 at 06:13

"I see in your eyes the same fear that would take the heart of me. A day may come when the courage of men fails, when we forsake our friends and break all bonds of fellowship, but it is not this day. An hour of wolves and shattered shields, when the age of men comes crashing down, but it is not this day! This day we fight!! By all that you hold dear on this good Earth, I bid you stand."


King Aragorn: Battle speech at the Black Gate.

User
Posted 01 Feb 2017 at 21:35

Walter I know how you are felling,


Have a look at my profile


I am from your neck of the woods


left in 72

User
Posted 02 Feb 2017 at 16:50

Dont know if i qualify for this conversation, but it is only my second posting,when i was diagnosed in 2013 with a G7 3+4=7 PT2B psa was 7.4 prostate confined,surgery failed as pathology post op pt3a G9, Joined Radical trial, raidiotherapy 2014, psa post radiotherapy 3.9-6.0-8.2 then almost 10.0, still no sign of spread after scans, started hormone therapy 2015 quickly brought psa down to 0.07 , 0.06 next one 7th Feb, question to anyone out there is would i maybe have had better success with hormone therapy as well as radiotherapy in 2014, i am still very positive but the side effects from the three treatments do not seem to be lessening and now am getting pain twinges in small of back and ribs ,thanks for listening.

User
Posted 03 Feb 2017 at 14:44

Wando


 


we are very similar.  Just before surgery, my PSA was 7.8.  After surgery, I was upgraded tp pT3b and Gleason 9.


I'm currently trying to weigh up my follow on treatments.  My onco is suggesting radiotherapy without hormone therapy.  We'll decide after my April PSA test.


Walter

User
Posted 03 Feb 2017 at 16:38

Hello Wando,

Wondering now whether you would have been better adding HT to the radiotherapy can't turn the clock back so since you are positive maybe let those thoughts go.

There are any number of men on here that say choose your treatment carefully and be happy with what you decided, without looking back.

If you want to get more replies it might be best to re-post your questions under a separate heading, in your own name.

There isn't anything wrong with posting on somebody else's page it's just that sometimes it might get missed and you may wonder whether you are being ignored. You're not - it just might not have been seen

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 05 Feb 2017 at 12:50

Ulsterman i too have a gleeson score of 9 and t 4 i'm 57 got diagnosed about 5 weeks ago, stay strong mate, i have just had my first chemo it went better than i thought,  I,m sure that we will have good days and bad days but stay strong and you will be fine.


 


Pete 


 


 

User
Posted 05 Feb 2017 at 12:55

Hiya both


 I'm  a new comer to this 58 yrs old   diagnosed 5 weeks ago already had first chemo, gleeson score 9  T4  240 PSA ?  ive got a good family around me and thats important  to me your comments will also help to keep going with the fight, stay strong 


 


 baldyman

 
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