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Stories of hope

User
Posted 02 Nov 2014 at 22:06
Hello,

This is my first post on here and I guess what I'm looking for is stories from other people living with prostate cancer. My dad was diagnosed a year ago with prostate cancer, Gleason score of 7, PSA over 500 with a few bone mets. He's 72 and fit as a fiddle. Hormone therapy has brought his PSA right back down to around 4 and he's luckily suffering very few side effects other than a few hot flushes. He's part of the stampede trial and not currently having radiotherapy.

I'd love to hear from people who have been living with the disease for a number of years, how they are coping and what I can do to be suppprtive to my father.

Look forward to chatting

Thanks

Jayne

User
Posted 17 Nov 2014 at 16:56

Jayne,

I've only just found this site and this is my first post, despite being a Men United member! I'm 71 and have been living with PCa for over seven years, from a base of Gleason 9 and PSA 62.3. So your Dad probably has plenty of years to which he can look forward. My advice to you is to treat him just the same as you always have, He just happens to have a chronic condition which can be well controlled with available drugs. At some stage he may be offered Abiraterone. My experience of this is that it brought no additional side effects to those of Zoladex and it really works. With every year that passes more treatment options become available so he and you should remain positive and hopeful and enjoy the many years ahead.

OC in Middle England

User
Posted 16 Dec 2014 at 06:19

Hi Jayne, I'm an Aussie. I was diagnosed with prostate cancer in 2007. It was picked up early through corrective surgery for an enlarged prostate. My PSA was only 1 at the time which caused my doctor to check via several biopsies. Your dad's score of 0.4 is very good as regards the development of the cancer. Has he had a bone scan? I am one of the truly lucky ones as I am informed that I am cancer free. A bone scan revealed that it had not progressed. My PSA is now undetectable. I know nothing of the Gleason score. It was not a part of my diagnosis. Perhaps Australian doctors do not refer to it.

While I was recuperating and still feeling a bit iffy about my condition I wrote a poem to try to put a more light hearted slant on things. I have posted it here in the hope that it might give your dad a giggle. Cancer research and treatments are evolving quickly these days. With the right advice and treatment your dad should be around to cuddle his grand kids.

Don't Put It Off

It began when I found I could no longer wee,
especially during the night.
It came out in spits and sometimes in spurts
and I thought to myself ...  Hell! That doesn't seem right.

Then when I was finished ... I wasn't you see,
'cause drip drip ... drip drip kept bothering me.
So I said to the missus "My plumbings affected."
She said "Darl it's probably badly connected.

You know when you start to get long in the tooth
there are signs to remind you you're not bullet proof.
So I think that it's time an appointment we make
with the doctor. Let's do it before it's too late.

So we did. And when first up Doc put on a glove,
I stepped back apace and said "Hang about love!
I hope you're not thinkin' what I think that you're thinkin'.
But he was. And he did. And I tell ya fair dinkum

the end of the bed rail I firmly took hold.
I nipped and I tucked and I squirmed and I rolled.
When at last it was over, I sat up and waited
while he told me my prostate was large and outdated.

It's not a big problem you'll need a rebore.
Take the stress of your bladder. Won't even be sore.
The bit we remove we'll send off to be checked.
Make sure it's healthy to keep you on deck.

But the doc phoned next week and here comes the crunch.
The news that he had put me right off my lunch.
The pathology's back and you won't like the answer.
I'm sorry to say that your prostate has cancer.

There are several treatments you've heard of no doubt,
and though I believe we should take it all out,
the final decision is still yours to make,
but know what's in store if your prostate I take.

So I asked him to tell me what problems I'd face
if the prostrate was finally removed from its place.
He told me that guys always raised an objection
when told that they'd no longer get an erection

Then my wife interrupted with this sage remark.
"He's an old dog. His bite's really less than his bark.
It's been ages since he carried on like a pup.
These days he needs splints just to keep it all up.

So if leaving it in still raises a doubt,
I agree with you Doc. Just take it all out."
A number of thoughts then rolled round in my head,
but finally I simply chose not to be dead.

Now my PSA rating has dropped below one
and I'm glad I decided to get the job done.
So if your pipe's leaky. If your wee is in strife,
see your Doc early. It may just save you life.

© Warren Cox  2007

 

User
Posted 20 Nov 2014 at 09:14

Hi Jayne

Keep your chin up.

I was diagnosed in August 2005 with PSA 3500 and extensive spread to bones. Like Allister above whilst it's not been plain sailing, after I got over the shock have lived life to the full for a lovely 9 years.

It's easy to say stop worrying (I keep having to tell my wife that! ("are you alright")) but life is good so I try to forget if I can about PCa until my appointments.

Trevor

Edited by member 20 Nov 2014 at 09:15  | Reason: Not specified

User
Posted 02 Nov 2014 at 22:06
Hello,

This is my first post on here and I guess what I'm looking for is stories from other people living with prostate cancer. My dad was diagnosed a year ago with prostate cancer, Gleason score of 7, PSA over 500 with a few bone mets. He's 72 and fit as a fiddle. Hormone therapy has brought his PSA right back down to around 4 and he's luckily suffering very few side effects other than a few hot flushes. He's part of the stampede trial and not currently having radiotherapy.

I'd love to hear from people who have been living with the disease for a number of years, how they are coping and what I can do to be suppprtive to my father.

Look forward to chatting

Thanks

Jayne

User
Posted 18 Nov 2014 at 11:51

Hi Jayne,  I was one of those men who tried to avoid going to the doctor and left it rather late.  That was 2 years ago now and apart from some tiredness and not so strong as I used to be (my wife says it could be my age!!) i'm ok.  Look at my profile so see where I came from and where I am now and I hope this will encourage you.  Arthur

User
Posted 19 Nov 2014 at 13:42

Hi Jayne

 

I was diagnosed in Feb 2008 with a PSA of 214 and extensive spread to bone (mainly spine, pelvis and ribs) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Nearly 7 years on I'm still enjoying a full and active life. I'm not saying it has been easy (see my profile) but it is possible! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

 

PS - I was on STAMPEDE as well

 

Edited by member 19 Nov 2014 at 13:43  | Reason: Not specified

Nil desperandum

Allister

Show Most Thanked Posts
User
Posted 03 Nov 2014 at 11:47
Jayne

welcome to this forum a club no-one wants to be part of but yet here we all are.

I am sure you will get a lot of replies to your first post, it is so re-assuring to be able to read others stories especially when things go really well.

Your Dad's daignosis of a cancer that has already spread to the bones may not be the best but his Gleason score is fairly low which indicates that the cancer cells themselves are less aggressive than some. This is great and seeing that his PSA has come down to single digits on basic hormone therapy is also a terrific result.

Stampede trial is a good thing to look at, some of the entry criteria are hard but I understad that the latest arm of it called arm J is looking at recently diagnosed men with advanced, metastic spread (and some with a less advnaced diagnosis) so worth at least looking into it to see if it may be of interest. One thing with trials is that you get a much more regular monitoring system, however the down side you do not get to choose the treatment it is randomly applied by a computer generated system.

When a loved one is diagnosed with PCa one of the first things we look for is reassurance and comfort so to find some feel good stories of how others have survuved and coped for years can lift your spirits.

I am sure they will reply and invite you to read their profiles (by clicking on their handle or avatar)

You may also like to download the toolkit from this site which gives you a wealth of information and guidance.

Welcome on board being there to support your Dad and anyone else in your family and circle of friends is a wonderful thing to do.

xx

Mo

User
Posted 03 Nov 2014 at 12:40

Hi Jayne,

I was diagnosed two years ago with gleason 9 and extensive mets, still here and doing fine.

I am still the baby on  the site there are many guys here been fighting this disease for many years and doing fine.

Happy to talk anytime just drop me a message.

Best wishes to your dad

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Nov 2014 at 23:21
Hello,

Thank you both go for your replies and great to hear you are doing fine Si. It is reassuring to hear people's stories of living with the disease. I keep telling myself life is too unpredictable to worry what may happen a few years down the line, I may get squashed by a bus tomorrow and have spent all my time worrying!

How have you found your treatment so far Si?

Many thanks

Jayne

User
Posted 17 Nov 2014 at 16:56

Jayne,

I've only just found this site and this is my first post, despite being a Men United member! I'm 71 and have been living with PCa for over seven years, from a base of Gleason 9 and PSA 62.3. So your Dad probably has plenty of years to which he can look forward. My advice to you is to treat him just the same as you always have, He just happens to have a chronic condition which can be well controlled with available drugs. At some stage he may be offered Abiraterone. My experience of this is that it brought no additional side effects to those of Zoladex and it really works. With every year that passes more treatment options become available so he and you should remain positive and hopeful and enjoy the many years ahead.

OC in Middle England

User
Posted 18 Nov 2014 at 11:51

Hi Jayne,  I was one of those men who tried to avoid going to the doctor and left it rather late.  That was 2 years ago now and apart from some tiredness and not so strong as I used to be (my wife says it could be my age!!) i'm ok.  Look at my profile so see where I came from and where I am now and I hope this will encourage you.  Arthur

User
Posted 19 Nov 2014 at 13:42

Hi Jayne

 

I was diagnosed in Feb 2008 with a PSA of 214 and extensive spread to bone (mainly spine, pelvis and ribs) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Nearly 7 years on I'm still enjoying a full and active life. I'm not saying it has been easy (see my profile) but it is possible! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

 

PS - I was on STAMPEDE as well

 

Edited by member 19 Nov 2014 at 13:43  | Reason: Not specified

Nil desperandum

Allister

User
Posted 20 Nov 2014 at 09:14

Hi Jayne

Keep your chin up.

I was diagnosed in August 2005 with PSA 3500 and extensive spread to bones. Like Allister above whilst it's not been plain sailing, after I got over the shock have lived life to the full for a lovely 9 years.

It's easy to say stop worrying (I keep having to tell my wife that! ("are you alright")) but life is good so I try to forget if I can about PCa until my appointments.

Trevor

Edited by member 20 Nov 2014 at 09:15  | Reason: Not specified

User
Posted 21 Nov 2014 at 21:51
Thank you everyone,

It's really great to hear your ststories and reading your journeys is really helping me to know what to expect.

My dad had his PSA back today, still 0.4 so that's great news (especially as I'm getting married next year!) So great that he's still in good health and the treatment is working well.

I'm not sure what to expect in terms of next treatment steps. His doctor seems happy to continue with the hormone treatment alone, but I've read recently that combining with chemo early on can have great effects.

What are your experiences? Did everyone start off with just hormone therapy alone?

Thanks again

Jayne

User
Posted 21 Nov 2014 at 22:02

Jayne

Hormone therapy is the "gold standard" here. I was On the STAMPEDE trial in March 2008 and now wonder if it had been better to have drawn the Chemo arm http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. Here's the rub - I have long outlived my prognosis and am alive and well almost 7 years on with minimal side effects http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. Would I have chosen this path? Ask me another one but for now I don't regret a single thing http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

 

Given all that I have learned about this disease since diagnosis I would opt for maximum impact i.e HT + Chemo. Purely personal opinion but bear in mind that the PCa you have today will bear NO resemblance to the PCa you have in the future as the cells constantly mutate. Hit the bu@@ers hard and early on if possible http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Nil desperandum

Allister

User
Posted 21 Nov 2014 at 22:47
Thanks Allister.

Yeah, it's a tough one! He's on the control arm for the radiotherapy arm of the stampede trial so maybe chemo isn't even an option if he wants to remain on the trial. Onco didn't really offer him any other options other than straight up HT, so maybe it is the best course at the moment, though it'd be nice for the doc to explain the full range of options! He doesn't seem particularly forthcoming, probably fed up with nosy daughters ;-)

Cheers

User
Posted 22 Nov 2014 at 05:04

Hi Jayne,

I was diagnosed nearly three years with Gleason 9 and bone mets. I am still here on hormone therapy alone. I will get to chemo etc when I become castrate resistant but whilst there are side effects I have enjoyed the respite well. And just a couple of months ago my daughter got married and I was able to celebrate it. An emotional day. I am sure your Dad will get there and experience the emotional rush I felt! All treatment paths are very individual because of the different paths PCa can take. For me I am happy to have some tools in the box for now. My PSA is rising so maybe in 2015 things will move along but I am focusing on working and living my life. Give your dad as much time as you can that is what is so important. I appreciate the help I get from both my children. Good luck on the journey.

User
Posted 16 Dec 2014 at 06:19

Hi Jayne, I'm an Aussie. I was diagnosed with prostate cancer in 2007. It was picked up early through corrective surgery for an enlarged prostate. My PSA was only 1 at the time which caused my doctor to check via several biopsies. Your dad's score of 0.4 is very good as regards the development of the cancer. Has he had a bone scan? I am one of the truly lucky ones as I am informed that I am cancer free. A bone scan revealed that it had not progressed. My PSA is now undetectable. I know nothing of the Gleason score. It was not a part of my diagnosis. Perhaps Australian doctors do not refer to it.

While I was recuperating and still feeling a bit iffy about my condition I wrote a poem to try to put a more light hearted slant on things. I have posted it here in the hope that it might give your dad a giggle. Cancer research and treatments are evolving quickly these days. With the right advice and treatment your dad should be around to cuddle his grand kids.

Don't Put It Off

It began when I found I could no longer wee,
especially during the night.
It came out in spits and sometimes in spurts
and I thought to myself ...  Hell! That doesn't seem right.

Then when I was finished ... I wasn't you see,
'cause drip drip ... drip drip kept bothering me.
So I said to the missus "My plumbings affected."
She said "Darl it's probably badly connected.

You know when you start to get long in the tooth
there are signs to remind you you're not bullet proof.
So I think that it's time an appointment we make
with the doctor. Let's do it before it's too late.

So we did. And when first up Doc put on a glove,
I stepped back apace and said "Hang about love!
I hope you're not thinkin' what I think that you're thinkin'.
But he was. And he did. And I tell ya fair dinkum

the end of the bed rail I firmly took hold.
I nipped and I tucked and I squirmed and I rolled.
When at last it was over, I sat up and waited
while he told me my prostate was large and outdated.

It's not a big problem you'll need a rebore.
Take the stress of your bladder. Won't even be sore.
The bit we remove we'll send off to be checked.
Make sure it's healthy to keep you on deck.

But the doc phoned next week and here comes the crunch.
The news that he had put me right off my lunch.
The pathology's back and you won't like the answer.
I'm sorry to say that your prostate has cancer.

There are several treatments you've heard of no doubt,
and though I believe we should take it all out,
the final decision is still yours to make,
but know what's in store if your prostate I take.

So I asked him to tell me what problems I'd face
if the prostrate was finally removed from its place.
He told me that guys always raised an objection
when told that they'd no longer get an erection

Then my wife interrupted with this sage remark.
"He's an old dog. His bite's really less than his bark.
It's been ages since he carried on like a pup.
These days he needs splints just to keep it all up.

So if leaving it in still raises a doubt,
I agree with you Doc. Just take it all out."
A number of thoughts then rolled round in my head,
but finally I simply chose not to be dead.

Now my PSA rating has dropped below one
and I'm glad I decided to get the job done.
So if your pipe's leaky. If your wee is in strife,
see your Doc early. It may just save you life.

© Warren Cox  2007

 

User
Posted 16 Dec 2014 at 09:17

Brilliant Snapper.

Just what we needed this morning. A bit of a laugh.

Spent a long time yesterday visiting an old footballing friend of my husband.

He'd had a simple fall (backwards) mid November and has broken his back and his neck and is paraplegic.
Very sad. He'll never have a kick around with his young grandsons again and can only speak when the ventilator is changed for short periods for his voice box.

It's really shaken my other half.

Live life to the full. You never know what's around the corner

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2014 at 11:50

Very well put Snapper and welcome to the forum.

Barry
User
Posted 17 Jan 2015 at 23:55
Hello all,

My husband was diagnosed with localised prostate cancer from a well man check on October 22nd. Psa 9, Gleason 5+4, age 58 He had robotic prostatectomy on 1st December, catheter out on 19th. I have come to find support on how to deal with depression associated with after effects (incontinence, impotence) from someone who knows how it feels. He is normally a very positive person, a 'doer', but the last week has seen him very down. I really think he thought the side effects wouldn't apply to him, and he would be back at work on 5th jan! Instead he's tired, cranky, incontinent on movement and this is not improving as fast as he would like. I m not sure how the forum works, but I've sent a post which is waiting moderation

User
Posted 19 Jan 2015 at 20:44
Hi Jayne, i was diagnosed in dec 2009 aged 47 with a psa of 1730 and spread to bones and lymph nodes. I began the stampede trial where i recieved chemo, ht and Zometa. Over 5 years on i am still working and feeling quite well although tired alot. My last scan showed that the mets had dissapeared from my lymph nodes and that there was no progression on bone mets. Dont quite understand this as my psa has slowly risen to 12.I will probably be starting a new treatment shortly and hopefully have a good response.Your dad should have many years ahead of him and hopefully you can share lots of good times together.Good luck
User
Posted 19 Jan 2015 at 21:00

Welcome snapper and speedy..They are tales of hope.

Brill poem snapper

Bri

 
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