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Diagnosed 2005 T4 Dire Prognosis, but still here.....

User
Posted 24 March 2017 11:50:36(UTC)

Dear Friends,

 

Today is an anniversary date I never dared hope I'd see, let alone be posting on here about it! 

Another milestone: 12 years and still counting.

 

I'm so grateful I've had all these years to meet so many new friends and enjoy so many new experiences.

THANK YOU ALL

My urologist was obviously a first class muppet, saying I had just 2 or 3 years left back in 2005. 

 

That first PSA test was done on March 24th of that year, just three days before my 54th birthday. And here I am, 66 in a few days time, and knowing that whatever present I get this year will be a thousand times better than that terrifying, unfogettable one then.

Mind you, it did look pretty scary at the time - a PSA of 182, T4 tumour with spread to seminal vesicles and pelvic wall & floor. However, once I'd met my optimistic oncologist, everything changed for the better.

He said I was young enough and fit enough to have the tiger cells blasted by 37 sessions of RT

Since my RT & HT back then, I've been incredibly lucky that Intermittent HT has worked well for me.

And even more lucky that PCa still hasn't spread to bones or lymph nodes

Apparently, when I'm off treatment, and my PSA slowly rises from 1.0 to 20+ it's because I have 'micro mets'.

Those damn cancer cells never leave, but at least Zoladex can be used to hammer them down again.

 

I finished my latest round of HT with a Zoladex injection in October last year, and am hoping like crazy that I get a decent 'hormone holiday'. Two years would do me fine, as I know the length of those breaks shorten over the years. My first one in 2007 lasted 44 months. Man, I enjoyed that one. :P


What can I say but 'JUST BLOODY GLAD TO BE HERE!!

 

And I'm really looking forward to seeing as many of you as possible at The Mill On The Soar on Sat 1st July, the 10th anniversary of 'The Party At The Mill'

You don't know just how much those get-togethers have meant to me.

I know I've said this before, but we've made friendships that I wished had began 50 years ago.

Out of despair came so much happiness. Who'd have thought it? 

But, I can never forget the great friends who've now passed, from our old 'legends' through to our recent losses.

Every one of those men (and their partners) did so much to help us all.

They're now partying in the sky, and we'll meet again for sure.

That has to be true - Vera Lynn said so!

 

 

Very best wishes,

 

 

George

 

Thanked 12 times
User
Posted 24 March 2017 12:39:38(UTC)

Great news and an inspiration to us all
Long may it continue
Best wishes
Debby

Thanked 1 time
User
Posted 24 March 2017 12:46:19(UTC)

Well done George...as always your post will give so much hope to others

Take care

Bri

Thanked 1 time
User
Posted 24 March 2017 13:34:54(UTC)
Encouraging message.
It's so nice to read your positivity and good mood.
You seem to be a great guy, you deserve things going that good.

Congrats on being so and being doing so well.
The best to you,

Lola
Thanked 1 time
User
Posted 24 March 2017 15:22:27(UTC)

So happy for you and such an inspiration to others,😀

Viv
X

The only time you should look back is to see how far you have come
Thanked 1 time
User
Posted 24 March 2017 15:22:44(UTC)

So happy for you and such an inspiration to others,😀

Viv
X

The only time you should look back is to see how far you have come
Thanked 1 time
User
Posted 24 March 2017 16:31:41(UTC)
An inspirational post, well done and thank you
Thanked 1 time
User
Posted 24 March 2017 16:44:50(UTC)

I am just bloody glad you are still here too, George xxx

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


Thanked 1 time
User
Posted 24 March 2017 16:57:19(UTC)
Congratulations, George.

Well deserved.

You help so many people by bringing them together, twice a year and I'm sure that without you I expect many of us would never meet.

Thank you.

Steve
Thanked 2 times
User
Posted 24 March 2017 17:29:34(UTC)

Many congrats.. amazing... I read from your profile you had a complete diet change after diagnosis.. did you keep it up.

My husbands PSA was 3.56 ( twice )in Nov 2016 leading up to his diagnosis... This week (pre FLA test) was 2.90

He cut out dairy etc on 1st January 2017 ( also started low dose aspirin with Vitamin D3 per the ADDaspirin trial)

Nochange in plan - 3 consults agree he has a large 3+3 tumour and will need treatment in the next 5 years ..so Monday he is having it treated. 2.90 however would not have had him sent to the urologist...

With a 27 year old son and a family history ( FIL died in June 2016 of PCa) I am super interested in your success story.

Thank you for sharing

Thanked 1 time
User
Posted 24 March 2017 17:50:24(UTC)

An inspiration!  Whatever you're doing, keep doing it!

Flexi

Thanked 1 time
User
Posted 24 March 2017 19:41:33(UTC)

Hia Marra,

Just thought I'd let you know that I'm still around, and bloody glad to be here as well. I had my first meeting today with an Oncolgist, having only consulted Urologists for the past 11 years. Unlike you I haven't yet reached a hormone holiday status, so pressing on with the HT. Last PSA of 2.97 sent them all into a spin, cosequently the meeting with the Onco, even my GP sent me for a PET scan. I've at long last been offered the removal of my man boobs, which will be next week.

All the best and long may you celebrate the 24th March.

Stu

Thanked 1 time
User
Posted 24 March 2017 20:32:35(UTC)

Hi George,

Very glad the regime you are following is working well for you.

Barry
Thanked 1 time
User
Posted 24 March 2017 20:32:57(UTC)

Stuc that's great news but a horrible operation I think ... take good care and don't overdo it when you get back home.

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


Thanked 1 time
User
Posted 24 March 2017 23:04:10(UTC)

Lovely cheering (and moving) post. Thanks George.

Thanked 1 time
User
Posted 25 March 2017 10:49:23(UTC)
WOW George what an achievement, I love to hear stories like yours, you give us all hope and long may you continue to do so.

Thank you

Roy
Thanked 1 time
User
Posted 25 March 2017 14:16:09(UTC)

Thank you all for your kind messages.

I hope I'll still be around for many more years of the battle, then I can look forward to more of your greetings.
They really cheer me up!

Two personal replies needed here:

1) Clare (Claret), Yes I am still on the Jane Plant programme. In 12 years I've had absolutely no dairy produce or red meat.
Looking at your husband's story, I can only say 'Great decision to go for Active Surveillance for a while'.

That's my own personal view, and I know it wouldn't do for everybody, however low the PSA at diagnosis.
I just think that urologists hurry too many guys into surgery before all options are considered.


2) Stu in Italy: Hey back at ya, me old marrer!' I hope your'e still loving life in Lunigiana.
It has to have the edge (just a little) on Geordieland! ; )

Like me you were diagosed in 2005, and although you had an RP, you've been on a roller coaster ride at times.
It's unbelievable that you've only just had an oncologist appointment. It just shows how well you've coped over almost 12 years.

May I wish you all the luck in the world in any forthcoming treatment. I feel that you'll do really well.
Mind you, I agree with Lyn about the boob op (rather you than me), please take it easy and rest up.

Now, just a footnote to my 12yrs on the PCa battlefield:

The last two years have been annoying to say the least. In fact in the last17 months, I've had only one month where I was totally clear of illness (infections, throat, chest etc). Absolutely none of the illnesses were PCa related, thank God.

But it's obvious that my immune system is totally compromised after so much treatment.

Even trying to boost it with Echinaea, big doses of Vit C and other supplements didn't work
Although I got through pneumonia OK between December and early February, within weeks I was hit again by infections needing more antibiotis and steroids.

Frankly, I was beating myself up about it, gettying totally pi$$ed off with feeling like a wuss, but now I've realised it's a small price to pay when I'm seeing PCa under control.

Now that spring is here, and very soon the sun will be blazing hot over Tyneside (yeah, right!), I intend to astound my cynical self by becoming as fit as a fiddle again. Being off HT will help a lot too.


See you at The Mill on 1st July, and if you haven't yet booked, please email me on:

georgehardy51@msn.com


Stay well my friends,

And once again, THANK YOU ALL,


George


Thanked 4 times
User
Posted 25 March 2017 15:49:03(UTC)

Hi George,

I'm still loving it here in Italy, even Brexit won't drive me away. If I have to I'll become an Italian citizen. Just because it's my first visit to an Onclogist doesn't mean that I haven't been through the trend mill with my Urologists over the past years. Getting a bit fed up with all these injections and pills. The Oncolgist gives me the willies, not much confidence in the guy.

Lyn, I guess I don't know what I'm letting myself in for, but it's a bit embarrassing lying by the swimming pool and I have boobs bigger than most of the ladies lying around the pool. I understand it can be quite painful, in for a penny in for a pound. But I'm actually looking forward to the op.

Stu

User
Posted 25 March 2017 16:34:45(UTC)

It will be worth it Stuc, I am sure x

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


Thanked 1 time
User
Posted 25 March 2017 19:17:25(UTC)

Hi George,

Glad you are doing well.

For the first time this year I have managed to brace myself, strip to the waist, and catch a few rays of sunshine, boosting my Vit D, I am sure you hardy northerners have beat me to it in scorching Gateshead?

It can't be long before we smell the first Barbeque of summer, I am sure that sunshine will help the hormone holiday?

:)

Dave

Thanked 1 time
User
Posted 25 March 2017 22:42:40(UTC)
What a fabulous post George,
It is so positive for others newly diagnosed you are such a an inspiration 12 years on and looking and feeling GOOD.🤓
I will raise a glass to your Birthday and the next 12 years .
Keep going my Geordie friend.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 27 March 2017 15:37:15(UTC)

Thank you George - really informative.

In the USA for a minimally invasive FLA. Will be following your lead on diet afterwards 100% ( ice cream last night seemed OK as a last meal before getting a prostate clean up today!)

You are inspirational!

Thank you for sharing

Clare

Thanked 1 time
User
Posted 27 March 2017 16:35:35(UTC)

Yes George, as both Lynne and Steve say, without you our GET TOGETHERS wouldn't happen, so you've got to keep up the JP for another 10 years at least!

Looking forward to Mill on Saur, it would be good if some of the "Newbies" could join us too!


Email George to book! Now. (I've still got a few of my HUGS I can give out)

Chris.

User
Posted 27 March 2017 18:51:37(UTC)
George you were one of the first who reached out to me when I was first diagnosed. Your heart and efforts are always in the right place, if anyone deserves to beat this then you do. Take care, Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
 
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