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User
Posted 02 Feb 2017 at 12:22
Hello I wonder if anyone can please offer any reassurance to my Dad who was diagnosed last night. He has a PSA of 18, a Gleason of 9 and a T3b. We are naturally very worried. He's started hormone therapy today then will have a bone scan before radiotherapy. I've been reading lots of your experiences on here and they have been of great comfort. Thank you.
User
Posted 06 Feb 2017 at 19:38

Hi there


Your post really struck a cord with me, nearly 5 years ago I was posting questions on this site and trawling through trying to find some positive stories to give me some hope after my Dad was diagnosed.  Dad's diagnosis was very similar to your Dad's; Gleason 9 (4+5) T3b and initial PSA of 19.7.  I'm pleased to say that after hormone therapy and radiotherapy Dad is doing great.  If you check my profile it contains details of Dad's journey.  After initial hormone therapy Dad's PSA reduced and he started radiotherapy, he also took part in the STAMPEDE trial and was on the Zometa (bone strengthening drug) arm.  I went with him for his six monthly check up today and after having finished the hormone injections in January 2016 and radiotherapy over 3 years ago his PSA is 0.7.  Dad is 73 and still works 4 days a week (only recently reducing from 5 days, he worked all the way through radiotherapy), he's very active, rides his bike (albeit at a leisurely pace), goes to the gym once a week and enjoys walking.  I know how tough it is when you first get the diagnosis, I was so upset and scared for my lovely Dad, I just felt sick all the time. This site was a huge comfort to me and I would always get replies when I posted questions, so keep posting.  I hope you have been able to take some comfort from my Dad's journey and it has given you some hope.


take care and best wishes.


Sarah 

User
Posted 02 Feb 2017 at 17:27

Hello Caroline and welcome to the site.

There are a number of men on here with similar scores to your dad and they continue to live their lives as normal, even though their "normal" isn't as it was before.

The hormone treatment dad was given is designed to reduce the tumour and once the bone scan results are back the consultants will have a better idea of what treatment will suit him best.

Yes, his scores are high, but we've had higher so tell him not to lose heart at this stage.

Go to Publications on the site and download The Toolkit which will have lots of information for you both to take in. The toolkit may help you when it comes to asking questions at the next meeting.

Write your questions down and make a note of the answers. It's also better iof somebody goes with dad because there is a lot of information to take in.

I'm sure others will be along now I've bumped you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Feb 2017 at 22:24
Hello,

My diagnosis wasn't quite the same as your dad's - I was T3b NO MO Gleason 8 with PSA 408. I had hormone therapy before having radiotherapy, prior to that I had a bone scan. Have a look at my profile to see my details etc.

When you get more info. add it to your profile and post here and others will be able to offer more advice and support.

Best wishes,

Arthur
User
Posted 03 Feb 2017 at 13:26

Caroline,


I'm a Gleason 9 just like your Dad; I'm still bouncing around 3.5 years after being diagnosed and I intend to drink many more pints of real ale before Old Nick gets me.


Take heart, go forward with hope, banish fear.


David

Edited by member 03 Feb 2017 at 19:13  | Reason: Not specified

User
Posted 03 Feb 2017 at 16:02
Hi Caroline, I am Gleson 9, on diagnosis 30 months ago T4 N1M1a PSA 342 but I am still here, still living life, drinking, having holidays, creating great memories fir my family and running ultra marathons , 66 miles this weekend in apfact so please reassure Dad that you never should give up and believe that there are good times ahead.
Keep posting, sharing your thoughts, good and bad and believe.
The one thing I wanted more than anything when I was diagnosed was lots of hugs from those important to me so please hug away,Dad will love it.
Take care
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 07 Feb 2017 at 23:31
Hi Caroline,
I know how scary those early days are I can so remember how terrified I was , I suppose my advise would be to read other stories on here of a G9 there are lots on here still around 5 years on and some at 10 years on . There are lots of success stories .
In the early days of diagnosis your emotions are all over the place and panic is forever on your shoulder but take heart in some of the stories here.
If you click on peoples avatars it will take you to there particular thread and bio where you can read there stories, we have been kicking around for nearly 4 years with an initial PSA of 13000 bone mets just about everywhere and pretty much as bad as it gets , but hey still here.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Feb 2017 at 19:07
Hi everyone just to let you know that Dad had his bone scan yesterday and his case is being discussed early next week. I guess when we find out the results from yesterday that will be the final piece of the jigsaw and a plan can be formulated. It's been an absolute rollercoaster of a few weeks. Everyone involved and close to Dad has had very little sleep but we are doing our best to be positive and strong for each other. This waiting is agonising. We hasn't realised that now he's got the hormone implant the tablets will stop. Hope everyone is doing OK and thank you as always for the amazing support.
User
Posted 17 Feb 2017 at 21:16

Yes, the tablets disguise the testosterone so that the cancer can't find it. The implant stops testosterone from being produced. So once the implant arrives, the tablet isn't needed.

It is slightly different for men who are on long term HT - they sometimes need both.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 02 Feb 2017 at 17:27

Hello Caroline and welcome to the site.

There are a number of men on here with similar scores to your dad and they continue to live their lives as normal, even though their "normal" isn't as it was before.

The hormone treatment dad was given is designed to reduce the tumour and once the bone scan results are back the consultants will have a better idea of what treatment will suit him best.

Yes, his scores are high, but we've had higher so tell him not to lose heart at this stage.

Go to Publications on the site and download The Toolkit which will have lots of information for you both to take in. The toolkit may help you when it comes to asking questions at the next meeting.

Write your questions down and make a note of the answers. It's also better iof somebody goes with dad because there is a lot of information to take in.

I'm sure others will be along now I've bumped you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Feb 2017 at 22:24
Hello,

My diagnosis wasn't quite the same as your dad's - I was T3b NO MO Gleason 8 with PSA 408. I had hormone therapy before having radiotherapy, prior to that I had a bone scan. Have a look at my profile to see my details etc.

When you get more info. add it to your profile and post here and others will be able to offer more advice and support.

Best wishes,

Arthur
User
Posted 03 Feb 2017 at 06:52

Thank you Arthur for sharing your journey I cannot express how grateful I am that you have contacted me. The reassurance is so comforting. I just want to support Dad however I can, unfortunately yesterday wasn't a good day. We were all in immense shock. I will read your message again later. Thank you and I hope you continue to be as well as you can possibly be. Thank you for making me feel brighter today.

User
Posted 03 Feb 2017 at 06:54

Thank you too, Sandra. I was feeling so low and scared yesterday and when I saw your profile picture it really made me smile. Thank you for the support and reassurance. I know I need to be strong but it's early days and falling apart myself at the moment!!! Will do my very best today.

User
Posted 03 Feb 2017 at 13:26

Caroline,


I'm a Gleason 9 just like your Dad; I'm still bouncing around 3.5 years after being diagnosed and I intend to drink many more pints of real ale before Old Nick gets me.


Take heart, go forward with hope, banish fear.


David

Edited by member 03 Feb 2017 at 19:13  | Reason: Not specified

User
Posted 03 Feb 2017 at 16:02
Hi Caroline, I am Gleson 9, on diagnosis 30 months ago T4 N1M1a PSA 342 but I am still here, still living life, drinking, having holidays, creating great memories fir my family and running ultra marathons , 66 miles this weekend in apfact so please reassure Dad that you never should give up and believe that there are good times ahead.
Keep posting, sharing your thoughts, good and bad and believe.
The one thing I wanted more than anything when I was diagnosed was lots of hugs from those important to me so please hug away,Dad will love it.
Take care
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 06 Feb 2017 at 19:38

Hi there


Your post really struck a cord with me, nearly 5 years ago I was posting questions on this site and trawling through trying to find some positive stories to give me some hope after my Dad was diagnosed.  Dad's diagnosis was very similar to your Dad's; Gleason 9 (4+5) T3b and initial PSA of 19.7.  I'm pleased to say that after hormone therapy and radiotherapy Dad is doing great.  If you check my profile it contains details of Dad's journey.  After initial hormone therapy Dad's PSA reduced and he started radiotherapy, he also took part in the STAMPEDE trial and was on the Zometa (bone strengthening drug) arm.  I went with him for his six monthly check up today and after having finished the hormone injections in January 2016 and radiotherapy over 3 years ago his PSA is 0.7.  Dad is 73 and still works 4 days a week (only recently reducing from 5 days, he worked all the way through radiotherapy), he's very active, rides his bike (albeit at a leisurely pace), goes to the gym once a week and enjoys walking.  I know how tough it is when you first get the diagnosis, I was so upset and scared for my lovely Dad, I just felt sick all the time. This site was a huge comfort to me and I would always get replies when I posted questions, so keep posting.  I hope you have been able to take some comfort from my Dad's journey and it has given you some hope.


take care and best wishes.


Sarah 

User
Posted 06 Feb 2017 at 20:33

Gosh is it nearly 5 years Sarah? It seems like no time at all since you joined! Glad to hear that dad is doing well and enjoying life x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2017 at 18:21
Dear Sarah I cannot thank you enough for taking the time to reassure me, your message has given me strength and hope and I've read it about fifty times! What a wonderful community this is albeit under such difficult circumstances. With much love to you and your lovely Dad xxx
User
Posted 07 Feb 2017 at 18:24
Thank you so much Kev your message is truly inspirational and has really picked me up today. I will definitely be sharing it with Dad. I know it's stories like yours which will give people strength and hope. I wish you all the very best.
User
Posted 07 Feb 2017 at 18:25
Thank you David for making me smile for the first time in days! Please continue to enjoy those pints and may there be many of them! Thank you.
User
Posted 07 Feb 2017 at 23:31
Hi Caroline,
I know how scary those early days are I can so remember how terrified I was , I suppose my advise would be to read other stories on here of a G9 there are lots on here still around 5 years on and some at 10 years on . There are lots of success stories .
In the early days of diagnosis your emotions are all over the place and panic is forever on your shoulder but take heart in some of the stories here.
If you click on peoples avatars it will take you to there particular thread and bio where you can read there stories, we have been kicking around for nearly 4 years with an initial PSA of 13000 bone mets just about everywhere and pretty much as bad as it gets , but hey still here.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 09:56
Thank you Julie for your kind words they really mean a great deal right now and I can hopefully give my parents the reassurance they desperately need right now. It's so tough isn't it? I am glad to hear there are positive stories out there. Take care, thank you and all the very best to you x
User
Posted 09 Feb 2017 at 18:24

Thanks Lyn.  I can't believe it's been nearly 5 years either, I don't know where the time has gone!  I'd not visited the site in a long time and just being with Dad at the hospital the other day and having that pre PSA result anxiety kick in again made me think I should check in and I'm so glad I did.  There are lots of people I remember from years ago still posting, it was good to see how everyone's getting along.


Caroline please do get in touch if you want to ask me anything else about Dad's treatment or any tips about what I did myself to cope with what is a worrying time.


Sarah


 

User
Posted 17 Feb 2017 at 19:07
Hi everyone just to let you know that Dad had his bone scan yesterday and his case is being discussed early next week. I guess when we find out the results from yesterday that will be the final piece of the jigsaw and a plan can be formulated. It's been an absolute rollercoaster of a few weeks. Everyone involved and close to Dad has had very little sleep but we are doing our best to be positive and strong for each other. This waiting is agonising. We hasn't realised that now he's got the hormone implant the tablets will stop. Hope everyone is doing OK and thank you as always for the amazing support.
User
Posted 17 Feb 2017 at 21:16

Yes, the tablets disguise the testosterone so that the cancer can't find it. The implant stops testosterone from being produced. So once the implant arrives, the tablet isn't needed.

It is slightly different for men who are on long term HT - they sometimes need both.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2017 at 19:57
Hi everyone I just wanted to let you know that Dad's bone scan results were reported back to him earlier and they haven't shown any spread to bones or lymph nodes. Radiotherapy to start in I guess about eight weeks. Yes he has cancer and yes it's aggressive and out of the prostate but I've learnt so much about men's bits over the past few weeks (!) I feel much more prepared and able to support Dad going forward. He's had quite a bit of bowel surgery over the past six years so I don't know if this will affect treatment but I guess we'll just have to wait and see. Thank you again for the tremendous support. Best wishes to you all xxx
User
Posted 22 Feb 2017 at 00:54

Good news ... and breathe. I hope the next bit goes as smoothly as possible.

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