DEVASTATED

DEVASTATED

User

Posted 01 Apr 2015 at 17:15

I like others have been following posts on here for a few weeks now, and am bowled over by the kindness and help that is given.

So I willl try and not get emotional and give my story to date.

I am 74 yrs. old and diagnosed with PC just before xmas, it came completely out of the blue, having had some water works problems, which I now learn seem to be the norm.

Both my wife and I were and still are totally devastated, but betweeen us, and our family of course, are trying to get things together.

My wife I should add is magnificent.

Anyway having had a examination with the GP, he suggested I see a specialist, so went self funding.

I saw the specialist who gave me a examination/biopsy, and a water function test, which showed I was retaining water and not emptying my bladder.

He advised me that my Gleeson score was 5+3 (8)

Following that I had a MRI Scan, which showed, using his words "a bulky tumor, may be some invasion into the edge of the bladder and possibly close to the rectum."

No nymph node invasion.

I also had a Isotopic bone scan which is clear.

I was given a course of tablets to take, for a month, cant remember their name.

I was then put on H.T. (monthly)

Surgery was arranged 1st wk. Feb. (Green light/Niagre Laser PVP)

Went very well, and included a bladder repair.

Specialist advised the invasion areas to bladder/rectum were lazered, and he advised he was pleased with the result and that the RT. would look after what if anything was left.

My scores are T4, N0, M0.

Whilst I went home the following day (felt 100 percent) I was not able to pass the required amount of pee, so a catheter came home with me and asked to return in a few days, when everything was ok.

Have recently seen the Oncolagist, who is arranging a ct scan, follwed by R.T. (daily visits M-F)

HT. to be every 3 months now for 3 yrs. (If I last that long!)

Have just received the tool kit, wish I had sent for it sooner.

With scores of T4, and Gleeso 5=3 (8) it being "Locally Advanced" to me things dont look good, and am finding it difficult to be positive, which I must do for my wife and familys sake.

If you have got this far, I hope it makes sence, as Im not exactly myself at the moment !!

I welcome your input/advice/etc.

Happy Easter to you all.

User

Posted 01 Apr 2015 at 22:18

Hi old1, I was dx last October T4n1m1a aged 49, I understand totally how you feel right now.

This forum has been great as you know you are not alone and it is full of success stories that should give you/me realistic hope plus real experiences along the way however it is only natural to have dark thoughts.

5 months on I have them daily still however they are much less emotional and only a slight distraction opposed to initially when they filled all my waking hours.

Don't beat yourself up about these thoughts but do focus on today and do all the things you want to not just "while you can" but because we all should have been doing that even without a diagnosis.

I intend being here for a long time but know already I will have done more in whatever time than I would have without a dx.

Be strong my friend and love every day.

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 01 Apr 2015 at 20:35

You will find a tremendous amount of support here. Look at my profile (click my name AWR1946). I hope this will encourage you in what can be done for you

Best wishes, Arthur

User

Posted 01 Apr 2015 at 21:33

It sounds like you are on the curative path with HT/RT.

There are many men on here who are leading long and fulfilling lives with and without the treatment you have been offered.

It's very difficult to get your head around a dx such as this but in time and with support you will realise how fortunate you are to have caught it when you did. Locally advanced in the best case scenario is cureable/can be knocked into remission...locally advanced if not cureable can be treated and managed for many years

Keep posting you are not alone

Bri

Edited by member 01 Apr 2015 at 21:35 | Reason: Not specified

User

Posted 02 Apr 2015 at 00:01

My dad (86) has been on HT for nearly 2 years, and is doing really well. Stay positive and you can look forward to a good life for many years!

Paul

Stay Calm And Carry On.

User

Posted 02 Apr 2015 at 02:04

Old1,
as Bri says, you are on a curative treatment programme so while it is natural to feel shocked, you will come in time to realise how fortunate you are to be able to have treatment. They wouldn't be offering you the radiotherapy if they didn't think there was a good chance of it working. I assume that the radiotherapy will be on the NHS and you are not planning to continue to self fund?

The laser treatment is not common in the UK and as far as I know not available on the NHS. Even with private medical care, it is usually not recommended for men with prostate cancer so it will be interesting for a lot of us here to see how you get on.

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

User

Posted 02 Apr 2015 at 08:45

Good morning Old1 and welcome from me too.
Can't help with your treatment plan as ours was different, (although my husband does share your age of 74) but just to re-iterate what the others have said. We are here and more than willing to support both you and your wife.

The partners on here know and understand what you are going through but more especially we empathise with the other half. We might not get prostate cancer ourselves, but we do see what it does to you.

Any questions, no matter how personal, please ask.

If there is something you really don't want out in public then I am sure nobody would mind a personal message to clarify a point.
Don't forget there are also nurses available on here who may be able to help.

Best Wishes to you and your wife and family.
Together and supporting each other - you WILL get through this.
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 02 Apr 2015 at 09:07

Morning Old1,

your life has just been changed, your assumed and expected path progression has totally changed and you feel threatened in the extreme.
You are bound to feel devastated.

We have all been through it to some degree, but it hits us all. Our good wives included.

As mentioned by others before, looks like you are in the curative camp which is a good place to be.
You will in time drop into a new 'normal groove' and life will carry on.
You will still have peaks and troughs, search for "squeaky bum time" on here. We all go through it.

When I was diagnosed at 56 I was mighty p****d that I would never see my grandchildren grow up, my pension had been a waste and life was generally a b****** for dropping this on me.

It's actually my second anniversary of being diagnosed and life is good.
Yes, life is different, it consists of the little extras like 3 monthly HT jabs, visits to the oncologist, blood tests and the associated heightened worry for a few days.

It's my 40th wedding anniversary the year after next and we are starting to discuss what we would like to do.

So, as I said, you will drop into a new groove and life will carry on.

It's perhaps harder to see from your end of the tunnel, but from where I'm sitting my view is not looking too bad.

Chin up chap, you still have a future.

All the best

Kevin

User

Posted 03 Apr 2015 at 12:32

With a PSA of 2.5 I think it is a small miracle that your GP picked up any concern and referred you on. Perhaps you should buy him a drink! It is rare to have T4 and such a low PSA level - on your paperwork, does it say which kind of prostate cancer you have? Most common is adenocarcinoma but there are others.

John and I share your initial view that Plant is a bit extreme so we try to follow the principles but not too rigidly. John has practically no dairy, having replaced most of it with Alpro soya, and rarely any red meat. Lots of tomatoes (cooked, fried, sauced, processed), sardines, garlic .... those principles don't cause too much hardship and if you believe it is helping then that is half the battle :-)

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

User

Posted 03 Apr 2015 at 18:53

Dear Old1

I am pleased to see that you have had lots of good advice on here. I wrote a long response to you the other day, just after you had posted only to have problems with the site and this forum service becoming unavailable.

My OH has a similar diagnosis wit a PSA of 3.6 yet a diagnosis of T3b with some nodes involved too. He ended up with radiotherapy treatment and is still on hormone injections. He also did the STAMPEDE trial that you might hear about, but I must admit that at first diagnosis that it is all very daunting and all these treatment options and trials can be difficult to absorb. It would be a lot easier if we were just told what treatment was best! It does however seem like your doctors are on the ball and have got stuck right into your treatment plan.

We too tried the Plant diet but found it very tricky to know what we could actually eat! So we adopted a few basics from it and reduced dairy and red meat and try to eat more cauliflower and broccoli. We also introduced occasional pomegranate juice, red kidney beans, tomato sauces etc. Your already good healthy diet will set you in good stead to tweak a few issues and apply what is advised by the authors.

Hope that you are feeling a little less stressed now and certainly not 'old'.

Best wishes

Alison

Edited by member 03 Apr 2015 at 18:56 | Reason: Not specified

User

Posted 08 Jul 2015 at 13:10

Well that's good news!

I am just a wife & daughter and only know as much as other people here - I guess with 3 important men in my life all diagnosed, I just learned faster than most.

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

User

Posted 11 Jul 2015 at 15:43

Hi Old1,

Just adding my support for you. As others have commented, your diagnosis is by no means the worst and it sounds like you have had prompt and assertive treatment ! It is such a shock through the initial diagnosis, it turns your life upside down and that of your family. Hopefully, you will find some sense of equilibrium ! Keep us posted, you have a lot of living to do !

Regards, Fiona.

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User

Posted 01 Apr 2015 at 20:35

You will find a tremendous amount of support here. Look at my profile (click my name AWR1946). I hope this will encourage you in what can be done for you

Best wishes, Arthur

User

Posted 01 Apr 2015 at 21:33

It sounds like you are on the curative path with HT/RT.

There are many men on here who are leading long and fulfilling lives with and without the treatment you have been offered.

Keep posting you are not alone

Bri

Edited by member 01 Apr 2015 at 21:35 | Reason: Not specified

User

Posted 01 Apr 2015 at 22:18

Hi old1, I was dx last October T4n1m1a aged 49, I understand totally how you feel right now.

5 months on I have them daily still however they are much less emotional and only a slight distraction opposed to initially when they filled all my waking hours.

Don't beat yourself up about these thoughts but do focus on today and do all the things you want to not just "while you can" but because we all should have been doing that even without a diagnosis.

I intend being here for a long time but know already I will have done more in whatever time than I would have without a dx.

Be strong my friend and love every day.

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 02 Apr 2015 at 00:01

My dad (86) has been on HT for nearly 2 years, and is doing really well. Stay positive and you can look forward to a good life for many years!

Paul

Stay Calm And Carry On.

User

Posted 02 Apr 2015 at 02:04

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

User

Posted 02 Apr 2015 at 08:45

Any questions, no matter how personal, please ask.

Best Wishes to you and your wife and family.
Together and supporting each other - you WILL get through this.
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 02 Apr 2015 at 09:07

Morning Old1,

your life has just been changed, your assumed and expected path progression has totally changed and you feel threatened in the extreme.
You are bound to feel devastated.

We have all been through it to some degree, but it hits us all. Our good wives included.

When I was diagnosed at 56 I was mighty p****d that I would never see my grandchildren grow up, my pension had been a waste and life was generally a b****** for dropping this on me.

It's my 40th wedding anniversary the year after next and we are starting to discuss what we would like to do.

So, as I said, you will drop into a new groove and life will carry on.

It's perhaps harder to see from your end of the tunnel, but from where I'm sitting my view is not looking too bad.

Chin up chap, you still have a future.

All the best

Kevin

User

Posted 03 Apr 2015 at 11:15

I must thank each and every one of you, Arthur, Bri, Kev, Paul, LynneEyre, Sandra, Kevin. for all your advice which I find very humbling.

Im still fighting the CURATIVE CAMP bit, but slowly and surly getting closer to the "normal groove" !!

I wish I could buy you all a drink, dont say we have to give that up as well !! (Im only joking, Id give anthing up to get better.)

Talking about drink, should a diet without dairy be considered ?

We eat very healthily, so wondering if it is necessary, non of the professionals have mentioned anything, so far.

I have rightly or wrongly bought a book "The Plant Programme" which I have thumbed thro. but can go to I think extremes.

I forgot to mention in my post that my initial PSA level was 2.5, my GP said in our first appointment that was normal.

He subsequently changed his mind later on, so I guess you cant rely on this figure.

Thank you all once again, and will to keep in touch.

P.S.

LyneEyre, Radiotherapy is for sure on the NHS. we had to dig very deep to pay for the Green Light Treatment.

User

Posted 03 Apr 2015 at 12:32

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

User

Posted 03 Apr 2015 at 18:53

Dear Old1

Hope that you are feeling a little less stressed now and certainly not 'old'.

Best wishes

Alison

Edited by member 03 Apr 2015 at 18:56 | Reason: Not specified

User

Posted 04 Apr 2015 at 10:43

Thank you Alison for your post, it really is appreciated.

We are also tweeking our already healthy diet and reducing dairy etc, as has been said if you think its doing you good, then thats half the battle !

All the advice I have had certainly helps, I have gone over the posts many times, as it seem to help.

Thank you again, and my best wishes to you both.

User

Posted 08 Jul 2015 at 11:59

Originally Posted by: Online Community Member

I have had no problems, so far, why isn't this treatment not recommended ?

User

Posted 08 Jul 2015 at 12:03

Originally Posted by: Online Community Member

I do have adenocarcinoma cancer.

You seem to have a lot of knowledge on the subject, thanks for sharing it so far.

User

Posted 08 Jul 2015 at 13:10

Well that's good news!

I am just a wife & daughter and only know as much as other people here - I guess with 3 important men in my life all diagnosed, I just learned faster than most.

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

User

Posted 08 Jul 2015 at 13:51

I have updated my original post today, dont know if I have used this site correctly, but cant see it so far !?

All i can say, you are some wife and daughter.

User

Posted 08 Jul 2015 at 18:04

It doesn't look like the update worked but it is easier for us readers if you update by adding a new post here at the bottom rather than change the first one.

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

User

Posted 10 Jul 2015 at 10:04

Hello again Old1.

As well as giving an update in conversations, since your lazer treatment is new to most and not readily available it might be a good idea for other people offered your treatment in the future, if you could fill in your profile.

People can then look back on what happened to you and follow through your progress without having to search through loads of posts.

Just a thought

All the best

Sandra

Edited by member 10 Jul 2015 at 11:15 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 11 Jul 2015 at 14:29

Thanks LynEyre and Sandra, will do.

User

Posted 11 Jul 2015 at 15:43

Hi Old1,

Regards, Fiona.

User

Posted 13 Jul 2015 at 16:23

Have just filled in my profile hope it all makes sense !!

Im note sure with this site wether to start a new post, or continue with the old one ?

In this case Im continuing the old thread, with a update on my profile.

Hope it all works out.

I have to say yet again what a help this site is and cannot recommend it enough to those learning to live with this terrible disease.

I hope to stay in touch for a long time.

User

Posted 13 Jul 2015 at 17:41

Good job Old1.

Edited by member 13 Jul 2015 at 18:48 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 13 Jul 2015 at 18:30

Great, we can all see the update on your profile now.

We too are being treated at Velindre and agree with the excellent levels of care. Good to hear.

Best wishes to all.

Alison

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