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User
Posted 02 Jun 2016 at 09:24
That's good Steve, I had my last HT injection last November and am feeling stronger and more alert than when I was having the injections. Hoping for the same for you asap.

Arthur

User
Posted 02 Jun 2016 at 11:35
Hi,

Just waiting in a very long queue at the hospital to have a PSA test done before my six month checkup with the oncologist next Tuesday.

Steve

User
Posted 02 Jun 2016 at 12:01

I'm very envious about having the last HT jab and look fwd to hearing of your psa result.
Paul

User
Posted 06 Jun 2016 at 15:41
Hi Steve

Hoping and praying for a great result for you tomorrow

Arthur

User
Posted 06 Jun 2016 at 16:46
Steve

Looking forward to hearing your good news tomorrow.

Thanks Chris

User
Posted 06 Jun 2016 at 17:28

Hello Steve,

Good luck tomorrow..

KRO...

User
Posted 06 Jun 2016 at 23:37

Hi,

Thanks for your kind messages. 

Well tomorrow (Tuesday) is my big day, my appointment with the oncologist where I find out if my PSA results indicate that I can come off my HT.  I hope everything is ok and that I end the treatment as planned. 

To be honest, I haven't thought too much about it until now because I've been so busy over the last few days with the work I've been doing for PCUK, photographing the London to Amsterdam Cycle Ride.  It was a great event, so many heroes taking part to raise money to help us all in our fight against PCa.  I was so pleased they asked me to take on this role, I finally got chance to see the city I've wanted to visit for ages.  I just hope they like the stuff I shot.

Well, I'll try and post my results tomorrow evening.

Steve

 

 

User
Posted 07 Jun 2016 at 12:39

Feeling sick.

I've just rung my GPs to check that I was actually given the 4 week dose of Zoladex last Tuesday as when I was leaving the GP's room I noticed that the box he took the stuff from said the dose was 10.8mg.  It's been playing on my mind since then so I rang to check this morning.  Couldn't speak to the GP who performed the act but spoke to another and he confirmed that it was the twelve week dose I was given so instead the treatment ending at the end of June, I'll have to wait until late August.  I told the GP twice before he gave me the jab that it should be the smaller four week dose.  He should have told me what he was doing.

I can't tell you how fed up I feel.  The HT has been wearing me down so much in recent months that I'm just tired of being on so many meds (15 a day, including my cardiac meds).  I can see why some decide to stop taking them.

Steve

User
Posted 07 Jun 2016 at 17:43
Hi,

Oncologist appointment not good news I'm afraid. PSA up again. Bone Scan and CT Scan to be arranged as soon as possible.

Some days just get worse.

Steve

User
Posted 07 Jun 2016 at 18:05

Oh dear - how much has it risen by? Hopefully, it is simply that the GP who gave the wrong dose also injected it incorrectly or the practice has been storing it badly

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

User
Posted 07 Jun 2016 at 18:05

Disappointing is not a good enough word but I can't think of a better one at the moment. Hang on in there.

Thinking of you

Rosy

User
Posted 07 Jun 2016 at 18:12
Sorry to hear this Steve

Keep your chin up mate

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Jun 2016 at 21:31
Hi Steve

What is the rise? Glad you are having the scans, it will give the oncologist the information needed to make the right decisions.

Sorry to hear this news Steve, maybe it's lucky you had the twelve week injection of HT after all.

Take care

Allison xx

User
Posted 07 Jun 2016 at 22:29
Steve,

Sorry to hear your PSA is up, hopefully the scans are just a precaution.

All the best,

Arthur

User
Posted 08 Jun 2016 at 06:19
Steve,

Sorry to hear your news but wish you all the best for the scans.

John

User
Posted 08 Jun 2016 at 08:31

Hi Steve,

Sorry to hear this latest news... good luck with the scans

KRO...

User
Posted 08 Jun 2016 at 08:39

Hi Steve

Every time you are up, it seems there's a sledgehammer to knock you down again. Hope the scans results go OK and the PSA rise was due to the injection.

Paul

Stay Calm And Carry On.
User
Posted 08 Jun 2016 at 10:24
Originally Posted by: Online Community Member
Hi,

To be honest, I haven't thought too much about it until now becauseI've beenso busy over the last few days with the work I've been doing for PCUK, photographing the London to Amsterdam Cycle Ride. It was a great event, so many heroes taking part to raise money to help us all in our fight against PCa. I was so pleased they asked me to take on this role, I finally got chance to see the city I've wanted to visit for ages. I justhope they like the stuff I shot.

Well, I'll try and post my results tomorrow evening.

Steve

[/quote

Just a thought Steve - is it possible that your PSA has gone up because of being busy with the cycle ride?

Arthur

Edited by member 08 Jun 2016 at 10:26  | Reason: Not specified

User
Posted 08 Jun 2016 at 12:11

Thanks everyone for your messages of support,

Arthur, I made sure I had the test on Thursday before I left for the trip so that couldn't have affected the results.

My PSA in December was 0.027, April 14th. it was 0.043 and the most recent one was 0.054.  Not high but my Oncologist is concerned that it's on the rise and has doubled since I was last reviewed.  That, in addition to my decline in physical condition and wellbeing in recent months has raised her concerns about what's actually going on.

If it turns out that the radiotherapy I had in October, 2014 hasn't worked, I have lost my chance of a cure.

Steve 

Edited by member 08 Jun 2016 at 12:36  | Reason: Not specified

User
Posted 08 Jun 2016 at 12:27
Steve,

Thanks for posting your results. Hopefully it is just a blip but I can understand your concerns. I'm 17 months past RT now and my levels have remained at 0.2 for the last two tests. I'm dreading my next Onco visit next month. I sincerely wish you well.

John

User
Posted 08 Jun 2016 at 12:29

Check out Ray's profile to remind and reassure yourself how the PSA can vary when you still have a prostate, of which healthy cells can repair over time.

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

User
Posted 08 Jun 2016 at 13:56
Steve

Not the news you wanted and having a slowly rising PSA myself I know how you must feel. Try to stay positive, not that I always do.

Take care.

Thanks Chris

User
Posted 08 Jun 2016 at 19:31

Try to keep upbeat mate....some sound advice from Lynn..

Bri

User
Posted 08 Jun 2016 at 20:15

not a high number Steve it may still level off so all is not lost mate fingers crossed Andy

User
Posted 09 Jun 2016 at 21:11
Hi,

The hospital rang me this afternoon to arrange my bone scan: next Tuesday 10am injection, 1pm scan. More concerned this time than I was two years ago.

It's so weird, two years ago this week I was diagnosed. It was sunny, warm and the World Cup was just starting. This week I feel as if I have stepped back in time, similar weather and Euro 2016 is just starting and wondering what my future will be.

I really need to talk to someone.

User
Posted 09 Jun 2016 at 21:34

hope it is good news next week for you Steve wishing you all the best Andy

Edited by member 09 Jun 2016 at 21:35  | Reason: Not specified

User
Posted 09 Jun 2016 at 23:33
Steve,

I too was dx'd 2 years ago this week. Good luck for the bone scan, at least you know what to expect. I recall having that scan too.

John

User
Posted 10 Jun 2016 at 15:44
Hi Steve

You must feel like your whole life has been on 'hold' for 2 years.

I think we all probably have had that feeling, scared to plan anything, dreading blood tests, worrying and wondering what will happen next.

I hope that the scans will show that there is nothing to worry about, it is good news that you are getting these scans, so either way, action can be taken ( or not as the case may be). Another difficult wait though, both for them and the results.

My OH is due the full set of tests again in October and the test times seem to come around so fast.

Is there any support in the area, people you can chat to face to face?

Of course you always have us lot!

Alison

User
Posted 10 Jun 2016 at 18:18

Hi Steve
Don't worry , my psa goes up and down but has remained under 0.1 over the last 15 months. I don't worry too much about increases in the 0.0x range but then I'm an engineer.

Sounds like your photography sessions are great, they must give you great pleasure and motivation. Concentrate on the plusses Steve.

I'm thinking of you

Paul

User
Posted 10 Jun 2016 at 19:29

Hello Steve,
Have just started to pick up posts having been away again camping.
Sorry that you appear to have stepped back in time.

No point in saying "Don't worry" because you will eh ! Natural after all.

Next Tuesday will seem like a very long time to wait. I really really really hope that the scan can show reasons for the rise. Thinking of you as usual.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Jun 2016 at 22:08
Hi Steve,

Keep your chin up , not easy I know we are going tomorrow for our results. Life is sometimes very hard but stay positive.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2016 at 23:31

Hi,

Thanks for your messages, it really helps to know you're there for me.

Julie, hoping Trevor's results are good tomorrow.

I received the date for my CT Scan. It's being done on Friday, so fortunately, they're organising things pretty quickly, with the bone scan taking place on Tuesday.  Hoping it means that I should know what's going on in the next couple of weeks. 

I keep trying to remind myself that everything last week seemed fine and that things maybe the same again after I get my scan results. 

Steve

 

 

User
Posted 13 Jun 2016 at 02:24

Hi Steve, sorry that you are in a worrying spot again. Try and stay positive. Waiting for results is very stressful and time moves so slowly when waiting. Cheers Georgina

User
Posted 15 Jun 2016 at 21:47
Hi,

Well, I had my bone scan yesterday and on Friday will have my CT Scan.

I found out that I won't have a results appointment until July 5th. I had hoped to find out the results by the end of next week but was told that my oncologist is away until then and said she wanted to be there to discuss options if the results are not good.

Yet more time to wait.

Steve

User
Posted 15 Jun 2016 at 23:43

Hope results are not bad but should this be the case from what you say your oncologist seems to think there are options.

Barry
User
Posted 16 Jun 2016 at 05:22

hi steve
only a short wait at least your onco wants to be their for you and not pass you around

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 16 Jun 2016 at 08:54

Horrible having to wait the extra time Steve but it sounds like your Onco is keen to do her best for you. She knows you and your history.

I'm sure you'd rather speak to somebody who knows all about you than have to spend time with a stranger who would have to keep referring to somebody else's notes

Best wishes friend

We can't control the winds - but we can adjust our sails
User
Posted 17 Jun 2016 at 14:51

Steve

All the best for your tests, like you say 5th July seems a long way off, just had my next test and slightly late two year review brought forward from July 5th to Monday next week.

Thanks Chris

User
Posted 17 Jun 2016 at 19:54

Hi Chris,

Good Luck for Monday.  I wish my results were due next week. 

I had my CT Scan this morning, now comes the wait to see what they find.  Hopefully, nothing. 

Have a good weekend.

Steve

User
Posted 22 Jun 2016 at 16:18

Hi,

I've just had the best phone call ever!

One of my oncology support nurses has just rung me to say that my oncologist wanted me to know that my Bone Scan & CT Scan came back negative for cancer!!!  Instead of going for my July 5th results appointment, I don't need to go until next December! 

I'm so relieved, I could cry.  I probably will, why not.

Steve

 

User
Posted 22 Jun 2016 at 16:21
Terrific news Steve

Well done,

Arthur

User
Posted 22 Jun 2016 at 16:36

Well, they'll be happy tears won't they.

Good for you Steve.

Hope everything else in your life is looking up too !!

Big Big sigh of relief.

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2016 at 16:40

Lovely news Steve
I hope you can chillax a little now !! Remember the ticker !!
Very best wishes
Chris

User
Posted 22 Jun 2016 at 17:28

Brilliant news! Cry lots of happy tears!!!

User
Posted 22 Jun 2016 at 17:39

Fantastic news Steve!

Keep Right On!

KRO

 

User
Posted 22 Jun 2016 at 18:44
Very pleased to hear this good news!
User
Posted 22 Jun 2016 at 19:15

Steve.

******* well done mate, really pleased for you. You certainly deserve some good news.

 

Thanks Chris

 

 

User
Posted 22 Jun 2016 at 20:58

Great news Steve you must feel a great weight has been lifted from your shoulders, will raise a glass of wine for you tonight .Andy

Edited by member 22 Jun 2016 at 20:59  | Reason: Not specified

User
Posted 22 Jun 2016 at 21:02

That's fantastic !! It's great to hear such positive news 👍🏼
Viv

The only time you should look back is to see how far you have come
User
Posted 22 Jun 2016 at 21:14
So good to read fantastic news Steve

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

 
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