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User
Posted 31 May 2015 at 14:50

Hi everyone

 

I've recently been diagnosed, a long process which went way over the recommended waiting time, but now I'm a little wiser and due to see the radiologist on Wednesday. My PSA was 13.8 at my GP, rising to 18.6 at biopsy. Gleason 9, T3aM0N0.

As you will appreciate it is all a bit overwhelming at present and I'm just trying to get my head around it.

I hope to be a useful contributor in due course

 

Thanks.

Edited by member 31 May 2015 at 23:14  | Reason: Not specified

User
Posted 31 May 2015 at 23:55
Kelpie

hi and welcome to the forum. I am sorry you find yourself here but we are a good bunch and we do try to look out for each other.

I am just posting to say Hi and to move your post up the board a bit so that you get more replies. The moderator has to vet a brand new thread so it can take a while between you posting and it actually appearing on the forum.

Now that your initial tests have been done you have a gleason score and a staging has somebody explained what they all mean and what your treatment options are?

Have you downloaded the toolkit from this site? It is pretty good and has lots of really useful information in it on just about every aspect.?

I am sure others will drop in to say Hi and in the meantime if you have any more info you can share it will help people to respond to this and any future posts. When is your next appointment and is it with the Urology consultant?

The increase in your PSA may be due to the biopsy that is quite common.

best wishes

xx

Mo

User
Posted 01 Jun 2015 at 06:29

Hello Kelpie and welcome from me too.
As Mo says, we are a friendly bunch.
Ask any questions you want. Somebody will know the answer or can point you in the direction of it.
There is no part of Prostate cancer treatment that is "off topic" and not answered. If you want to know then we'll help you find out.
Good luck and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Jun 2015 at 07:06
Hi Kelpie

Sorry that you are here, I was diagnosed last November gleson 9 so I can probably guess what is going through your mind. Feel free to post any questions plus what the consultants recommended way ahead is as that will give you a sense check from others here. Also feel free to post your emotions as I found it important to have a platform for these initially and ongoing.

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 01 Jun 2015 at 07:15

hi kelpie

you have very similar scores to my own if you click my profile it will tell you my story so far, a running collegue of mine is also gleeson 9 but his prostate is contained so treatment for everyone can be different even with similar results he had RT treatment and now is just monitired

I have a good idea how you feel, if you need to chat on here or prefer to private message me I dont mind

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 01 Jun 2015 at 07:54
Hi Kelpie

Welcome, as others have said you will get a lot of support and help here. Keep posting your updates and there's always someone who can offer some good advice

Best wishes, Arthur

User
Posted 01 Jun 2015 at 12:39

Hiya Kelpie , i was diagnosed in 2013 with a G9 T3b N1 M0 , as Bladerunner said ... click on anybody's name and read there profile .

I started on a Stampede trail ... 3months ago i was moved to the Preside trail , if you can get  on a trail you will be looked after more .

User
Posted 06 Jun 2015 at 21:50

Whilst on HT I still played short tennis but had to rest more between games. With the addition of RT I felt even more tired but forced myself to take quite long walks though at reduced pace. I do think taking exercise even in moderation is very beneficial. It would have been very easy to just sit back and do little so required determination.

Barry
User
Posted 06 Jun 2015 at 22:11
My OH started his HT this week he asked the specialist nurse about common side effects and she told him possible weight gain, hot flushes, man boobs and fatigue. She said that the best thing to do for fatigue is to exercise, even if it's just a walk around the block or a stroll to the shops - it'll also help with the possible weight gain too!

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
Show Most Thanked Posts
User
Posted 31 May 2015 at 23:55
Kelpie

hi and welcome to the forum. I am sorry you find yourself here but we are a good bunch and we do try to look out for each other.

I am just posting to say Hi and to move your post up the board a bit so that you get more replies. The moderator has to vet a brand new thread so it can take a while between you posting and it actually appearing on the forum.

Now that your initial tests have been done you have a gleason score and a staging has somebody explained what they all mean and what your treatment options are?

Have you downloaded the toolkit from this site? It is pretty good and has lots of really useful information in it on just about every aspect.?

I am sure others will drop in to say Hi and in the meantime if you have any more info you can share it will help people to respond to this and any future posts. When is your next appointment and is it with the Urology consultant?

The increase in your PSA may be due to the biopsy that is quite common.

best wishes

xx

Mo

User
Posted 01 Jun 2015 at 06:29

Hello Kelpie and welcome from me too.
As Mo says, we are a friendly bunch.
Ask any questions you want. Somebody will know the answer or can point you in the direction of it.
There is no part of Prostate cancer treatment that is "off topic" and not answered. If you want to know then we'll help you find out.
Good luck and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Jun 2015 at 07:06
Hi Kelpie

Sorry that you are here, I was diagnosed last November gleson 9 so I can probably guess what is going through your mind. Feel free to post any questions plus what the consultants recommended way ahead is as that will give you a sense check from others here. Also feel free to post your emotions as I found it important to have a platform for these initially and ongoing.

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 01 Jun 2015 at 07:15

hi kelpie

you have very similar scores to my own if you click my profile it will tell you my story so far, a running collegue of mine is also gleeson 9 but his prostate is contained so treatment for everyone can be different even with similar results he had RT treatment and now is just monitired

I have a good idea how you feel, if you need to chat on here or prefer to private message me I dont mind

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 01 Jun 2015 at 07:54
Hi Kelpie

Welcome, as others have said you will get a lot of support and help here. Keep posting your updates and there's always someone who can offer some good advice

Best wishes, Arthur

User
Posted 01 Jun 2015 at 12:39

Hiya Kelpie , i was diagnosed in 2013 with a G9 T3b N1 M0 , as Bladerunner said ... click on anybody's name and read there profile .

I started on a Stampede trail ... 3months ago i was moved to the Preside trail , if you can get  on a trail you will be looked after more .

User
Posted 01 Jun 2015 at 14:21

Hi everyone

Thanks for your replies and encouragement.

In  answer to some of your questions I have got the toolkit, a lot of info but I'm getting through it.

My next appt is on Wednesday with the radiologist. I started HT on Saturday with the tablets and see my GP on Thursday for the first injection.

I have heard of the trials and hope to be able to discuss these on Wednesday.

I'm a little concerned about the side effect of HT, how have these affected folk here?

Thanks again for you input and I'm sure there will be more questions in due course.

User
Posted 01 Jun 2015 at 14:58

Hi Pat, re the side effects of HT, there are some, yes, but we all differ as to how they affect us, for instance I'm still having hot flushes while others don't, some on here have sore nipples and I don't, what is normal though is to get 'moobs', man-boobs.

Hope this may allay your concerns, but whatever occurs we are here to help.

Chris.

User
Posted 01 Jun 2015 at 16:13

hi kelpie

my worst sideaffect seems to be shortness of breath, it has totally cocked up my running, still doing some but not as far or as fast, plus the lack of libido

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 01 Jun 2015 at 16:38

Hi Kelpie,

Yes there are potentially many side effects with HT and these can vary in type and intensity when experienced. Feeling tired prematurely affected me most strongly and for a time I also had sore nipples. Most men seem to experience a loss of libido and would consider this to be the worst side effect.

Barry
User
Posted 01 Jun 2015 at 20:43

HI KELPIE I TO HAVE HAD SAME SCORES AS YOUR SELF AND HAVE HAD HT  PILLS FOR FIVE WEEKS NOW AND HAVE HAD MY FIRST INLECTION A WEEK A GO, YES TO START WITH I WAS FEELING VERY TIRED AND YES I HAVE SORE NIPPLES BUT THIS HAS SEEMED TO GET A BIT BETTER AS TIME GO;S ON I HAVE BEEN ENTERED IN TO THE STAMPEDE TRIAL AND AT THE MOMENT I AM ONLY ON HT TREATMENT.

SO PLEASE DONT GET TO UPSET WITH YOUR SELF AS ALL THESE PROBLEMS SEEM TO BE OVER WELLMING AT THE MO BUT A BIT FURTHER DOWN THE LINE IT GETS BETTER I BLAMED THE TIREDNESS TO THE HT BUT THINK NOW IT IS YOUR STATE OF MINED? WELL IT WAS WITH ME.I KEEP MY SELF AS BUSY AS I CAN TO TAKE MY MIDE OF IT THIS IS HELPING ME.

 

User
Posted 01 Jun 2015 at 20:58
Hi Kelpie,

I'm on HT (Prostap) and have put on weight around the middle and have only smallish moobs thank goodness. I also have hot flushes from time to time. I've been encouraged to walk/take exercise to keep my bones strong

Arthur

User
Posted 06 Jun 2015 at 13:20

Hi again

Thanks for all your input.

I have started the tablets and have my first injection on Thursday.

I've agreed to the Stampede trial so will now have to wait for the radiotherapy.

Just trying to get used to it all now.

Cheers

User
Posted 06 Jun 2015 at 21:50

Whilst on HT I still played short tennis but had to rest more between games. With the addition of RT I felt even more tired but forced myself to take quite long walks though at reduced pace. I do think taking exercise even in moderation is very beneficial. It would have been very easy to just sit back and do little so required determination.

Barry
User
Posted 06 Jun 2015 at 22:11
My OH started his HT this week he asked the specialist nurse about common side effects and she told him possible weight gain, hot flushes, man boobs and fatigue. She said that the best thing to do for fatigue is to exercise, even if it's just a walk around the block or a stroll to the shops - it'll also help with the possible weight gain too!

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 13 Jun 2015 at 12:43

I started HT injections early March and so far I think I've been fairly lucky. I get hot flushes pretty frequently, but they don't last long. I seem to have avoided any tenderness or weight gain and moobs have yet to put in an appearance (but maybe it's just early days).

Tiredness has been a factor some evenings, but that may just be the strain of this. I sank pretty low for a while...

I've been exercising more than before, both walking and cycling (perhaps not the best thing to do, but the consultant said no reason not to - I frequently do 40-50 miles) which helps a lot with general mood.

User
Posted 13 Jun 2015 at 13:16

Nevyn, it is now possible to buy prostate-friendly saddles

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

User
Posted 17 Jun 2015 at 22:44

Indeed, I have one of these: http://www.rido-cyclesaddles.com/sensational-new-r2-c100064.html

Takes a bit of getting used to, but there's definitely less pressure on the perineum.

 
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