I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

<12345>»

A rise on this test

Email this conversation Print this conversation
User
Posted 05 Feb 2019 at 18:11
Yes it is available at Jimmy's but it is a trial so whether a scan can be purchased I am not sure. Mr B said the main purpose for John (if he gets to that point) would be that if the active cancer cells are away from the pelvic area, he would be prepared to give further RT. You never really see that mentioned on here; I guess because for the vast majority that have a slow burning recurrence some time after salvage RT, the active clusters will be in the prostate bed where no more RT can be given.

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

User
Posted 05 Feb 2019 at 18:52
Bri

Sorry to read your latest update. You know I've got you down as a survivor and I'm not changing my mind on that yet.

Fingers crossed for you

Ray

User
Posted 05 Feb 2019 at 18:54

Brian, I originally went from undetectable to 0.06 to 0.1 then 0.12. The rest is history. I too had had RALP and SRT.

The facts are I have reached this stage after nine years so if and only if this is a recurrence (without any BS, I probably think it is), please be assured that you have so much time and treatment a your disposal. Nothing is going to happen fast. You will deal with this mentally and physically and you will deal with it well.

I wish you well and positive strength, brother.

Bazza 

Edited by member 05 Feb 2019 at 18:57  | Reason: Not specified

User
Posted 05 Feb 2019 at 19:00

Brian - I've my next PSA test in two weeks.  Always an anxious time, as, like you, I've already had salvage RT.  I'm sorry to see the rise you have had, no matter how small.

Ulsterman

User
Posted 05 Feb 2019 at 19:14
Hello Brian,

Sorry to read this latest news. You said you might consider an MRI privately.

I've not yet experienced issues such as these, yet! But, might it be worth having and if necessary, paying for extra PSA tests over the next 3 months to see if this recurrence or blip or whatever has a pattern?

Just a thought.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 05 Feb 2019 at 20:10

Sorry to hear this Bri

Small numbers but I've said all along during our own journey that its not the number per se, its what it means that matters. I feel for you on that basis. Funnily enough, we coped with the bigger numbers much more easily and that’s  because by then we already knew the direction of travel.

good luck

Love Devonmaid xx

User
Posted 05 Feb 2019 at 20:35

Hi Lyn the registrar did actually mention RT as and when so its encouraging to ohear similar has been said for John

Bri

User
Posted 05 Feb 2019 at 20:46

Hi thanks all

Ray- I will take that  but also encouraged by your history

Bazza - thank you for your support and a reminder that its not downhill yet. Hope you are getting through the chemo ok

Ulsterman- twitchy times...fingers crossed for your results

Dave- i cant see the point in further blood tests at  this point. Strange I know but I trust them on that one

DM - thanks for your wishes. Yours and Johns story also inspires and reassures me

Bri

 

User
Posted 05 Feb 2019 at 20:47

Originally Posted by: Online Community Member
Sorry to read this Bri, especially as you worry so much. I think the three rises and 0.2 only apply to SRT which you have already had ?? So now some Onco let you hit 10 or more before starting HT and or Chemo which is your next progression. I’d maybe suggest you sit back and let psa rise to 3 or more then ask or think about funding PET scan ??
I think in any case a 3 month wait will do you no harm mate. Best wishes

Thanks Chris, hopefully 3 month time out

Hooe you are ok

Bri

User
Posted 05 Feb 2019 at 20:56

Hi Bri 

For what it's worth, after RALP and SRT my PSA was still at 0.6 so we waited until it hit 1.2 before starting HT. We had a chat after the SRT and I decided not to bother with scans before the HT. The first PSA test 4mths later was undetectable and it is still there 22 months after starting the HT.

The side effects of the Prostap3 for me are mainly hot flushes but occasionally a bit of fatigue that I can choose to give in to or simply work through.

Kind regards

Kevan 

 

User
Posted 05 Feb 2019 at 21:36

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

User
Posted 05 Feb 2019 at 22:45

Originally Posted by: Online Community Member

Hi Bri 

For what it's worth, after RALP and SRT my PSA was still at 0.6 so we waited until it hit 1.2 before starting HT. We had a chat after the SRT and I decided not to bother with scans before the HT. The first PSA test 4mths later was undetectable and it is still there 22 months after starting the HT.

The side effects of the Prostap3 for me are mainly hot flushes but occasionally a bit of fatigue that I can choose to give in to or simply work through.

Kind regards

Kevan 

 

Cheers Kevan there the success stories i want to hear. Keep it up mate

 Bri

User
Posted 05 Feb 2019 at 22:46

Originally Posted by: Online Community Member

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

Cheers Chris, heres hoping

Bri

User
Posted 06 Feb 2019 at 07:05

So it’s the day after the night before. Lying in bed this morning and the reality started to hit home. I thought how quickly the years have gone since I was first dx. I then wondered if I would have that amount of time left which has gone in the blink of an eye. I guess I won’t know. I’m not worrying as some may think but I can sense a bit of a dark cloud starting to form and descend and I’m not sure how to push it back. I do seek inspiration from others on here but will that be enough I wonder.

Bri

Edited by member 06 Feb 2019 at 07:16  | Reason: Not specified

User
Posted 06 Feb 2019 at 07:21

Brian

Sorry to hear about the clouds. I’m sure you’ve got a lot left in the tank. Just keep talking here and it will help.

Also don't let it sneak up on you. The stress did on me this week and I let the side down by getting bladdered last night.

Edited by member 06 Feb 2019 at 08:08  | Reason: Not specified

User
Posted 06 Feb 2019 at 12:25

Thanks Pete. Hope you are ok now

Bri

User
Posted 06 Feb 2019 at 12:28
Cheers Bri

I’m hung over 😵😂 and frankly I’m s*** scared of Tuesday but I just have to put one step in front of the other and stop being a baby. Plenty braver here in car worst straits.

User
Posted 06 Feb 2019 at 12:53

Fingers crossed for you Pete. Are you still on HT?

Bri 

User
Posted 06 Feb 2019 at 12:56
My second and last jab was August just in time for SRT.

This is the dreaded first post SRT test. I am being silly because even if it was metestatic it should still have taken a hit but there is always the chance that it is resistant to HT.

I just have to literally slog on until I know.

Thanks for asking,

User
Posted 08 Feb 2019 at 11:14

Just wondering what others experiences are when the doctor gives bad news. The registrar told me the cancer had recurred but there did not seem to be any sign that she was aware of or to be honest bothered about the impact that news could have on my wife or me. It was like she was telling me i had a UTI or something.

She must have recognised that the news had not been accepted by us with glee  as her response was ”C’mon youve been here before”. I told her we haven’t actually, but what if we had does that make it easier?? I do know that news of a recurrance can sometimes be harder for some people to take than the original dx so maybe the Doctor shoukd recognise that

Wouldnt it be wonderful if the medics would show some level of empathy and maybe even go as far as offering some advise to us.

It just shows that we are basically just a big part of the statistics jigsaw and treated as such

Bri

 
Forum Jump  
<12345>»
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK