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

Notification

Error

Post RP and SRT journey - July 3023 PSA test update

User
Posted 16 Aug 2019 at 17:02

I'm fed up.


I attended the funeral of a friend (two months younger than me) last week who died of cancer.


Not sure how I can get through the next few weeks other than by just accepting the worry and fear and press on.


I hate cancer.

Edited by member 04 Sep 2020 at 13:30  | Reason: Not specified

User
Posted 16 Aug 2019 at 20:42
Well you have made a start by sticking it up here, now open a bottle plan something nice for the weekend and eat chocolate!
User
Posted 17 Aug 2019 at 08:42

Pete - sorry to hear about your wife - fingers crossed it’ll be something uncomplicated to resolve.  As I get older, I notice more and more conversations revolve around health.  Part of life, I suppose.


i hope you can find some peace during this time.


Ulsterman

User
Posted 17 Aug 2019 at 11:44

We’re all with you. Hopefully, despite the problems your wife has it will be non cancer related and very treatable.


I echo your sentiments about cancer, it’s a siht.


 

Ido4

User
Posted 17 Aug 2019 at 16:08
Cheers folks
User
Posted 29 Sep 2019 at 16:20
Update

Wifey is still in the system and no news yet.

I am getting PSA axiety a month out which is further out than normal. I think it is because it is a much longer gap between tests so I feel like it has been a long time not knowing.

Due to extreme work stress I have been drinking too much and that really does not help because it sends my anxiety through the roof. I have committed to not drinking for as long as possible.

P
User
Posted 29 Sep 2019 at 17:25

Thanks for the update PP. The system seems to take a long time. I hope your wife is ok.


Sorry to hear work is causing stress.


PSA anxiety is hellish. My next test is Thursday 3/10 so won’t know result until a week later. 


Take care.


 

Ido4

User
Posted 31 Oct 2019 at 09:43

Blood draw tomorrow.


Results Wednesday.


Bum squeaking like mad.

User
Posted 31 Oct 2019 at 09:49
Fingers crossed mate

Bri
User
Posted 31 Oct 2019 at 10:04

Got more crossed that that ๐Ÿ˜‚๐Ÿ˜‚

User
Posted 31 Oct 2019 at 10:19

Good luck.

User
Posted 31 Oct 2019 at 10:35

Pete


Hope all goes well.


Thanks Chris

User
Posted 31 Oct 2019 at 12:50

Hope results are good PP. 

Ido4

User
Posted 31 Oct 2019 at 14:38
Cheers chaps
User
Posted 31 Oct 2019 at 17:25
Itโ€™s good luck from me. Best wishes. Always scary.
Just had 2 scans yesterday with psa >190. Donโ€™t get results till 15th Nov. I just keep myself busy ....
User
Posted 31 Oct 2019 at 23:29

Just been through the whole "test anxiety" thing myself, Pete, so I understand what you're going through. Hope your result is favourable.


Best wishes,


Chris

Edited by member 31 Oct 2019 at 23:30  | Reason: Not specified

User
Posted 01 Nov 2019 at 11:17
Cheers

Schrodingher has a lot to answer for!
User
Posted 01 Nov 2019 at 17:23

๐Ÿคž

Edited by member 01 Nov 2019 at 17:24  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Nov 2019 at 15:23

0.9 up from 0.05 in six months.


Damn. Looks like I won’t make retirement.


I can’t begin to express how much I feel I have let my family down.


corrected 0.5 to 0.05

Edited by member 06 Nov 2019 at 16:34  | Reason: Not specified

User
Posted 06 Nov 2019 at 16:17

Sorry to see the rise to 0.9. You haven’t let your family down, although I understand the thought. When do you see a doctor/oncologist to discuss next steps? I am gutted for you and yours. 


 

Ido4

User
Posted 06 Nov 2019 at 16:34
They are just doing a three month retest
User
Posted 06 Nov 2019 at 16:46

I’m also a panicking pollock.


I got home and rang them back because something big was bothering me and it was actually 0.05 to 0.09 with the original number being 0.07.


Still a rise but the lovely onco nurse notes it is dtull within a margin for error for those three readings.


Plan is three monthly with action “when or if” it reaches 1.0.


Ive been stressed with work and other stuff and it just got to me today.


Thanks for your kind words.


PP


edit: 0.7 to 0.07 I hate decimals

Edited by member 07 Nov 2019 at 06:30  | Reason: Not specified

User
Posted 06 Nov 2019 at 16:50
So 0.05 to 0.09? How long have you been off HT?
User
Posted 06 Nov 2019 at 16:51
Hi
My oh has been on the pc roller coaster for nearly 10 years and I really understand the psa anxiety. As long as you feel well in yourself, try not to worry too much. We have been through a lot of ups and downs and he has had several treatments and has to start another next week.
Never feel that you let your family down. Your family will be thankful you are with them and try to enjoy all the little moments you can. Good luck to you and your wife.
User
Posted 06 Nov 2019 at 17:04
Francij - middle of last year. SRT in October. First result 0.07 in February then 0.05 in May ish then 0.09 just now. Iโ€™ve seen people go both ways so it is annoying.
User
Posted 06 Nov 2019 at 17:07
@gilly

Thanks. I do suffer really bad psa anxiety and my mental health issues have caused me and my family a lot of issues that I feel a lot of guilt and shame about. But they stuck with me. So I am blessed in that way. It is silly to blame myself but I love them dearly and donโ€™t want them to suffer. You are right though- I need to enjoy my time with them and take it as it comes.
User
Posted 06 Nov 2019 at 18:27

I hope I’m correct when I say that my local hospital only measures from 0.1 and upwards. Anything below this baseline figure is considered a negligible PSA reading. I don't want to minimise your fears, but I hope this allays your worries somewhat. 

User
Posted 06 Nov 2019 at 18:31

Thanks mate. I’ve seen people bounce around below 0.1 and some bounce around, some drop and some go incurable. I just have to hope for the best. Schrödinger’s cat at his best (or worst). I panic easily ๐Ÿ˜Š


 

Edited by member 06 Nov 2019 at 18:32  | Reason: Not specified

User
Posted 06 Nov 2019 at 18:34

Pete


My PSA doubled in 2 months and the dropped , so don't get to hung up on the results just yet. Your 15.23 post says 0.9 should that read 0.09 ?


Thanks Chris 

User
Posted 06 Nov 2019 at 19:01

That’s better than I saw earlier! Relieved....

Ido4

User
Posted 06 Nov 2019 at 20:34
Chris

Yes. I was frazzled and moved the decimal place. I know the damn numbers move up and down. Not easy is it?

Ian

Yes. I was flapping like a good one until I rang back. An increase but still below 0.1. Just gotta cross fingers...
User
Posted 07 Nov 2019 at 00:32

Originally Posted by: Online Community Member
I’m also a panicking pollock.

I got home and rang them back because something big was bothering me and it was actually 0.05 to 0.09 with the original number being 0.7




 


I quite like pollock. It is now more than 3 years since John went to 0.11 and then it dropped back down and has stayed at 0.09 / 0.1 / <0.1 ever since. Maybe it will rise eventually but for the time being the onco is of the view that he may just have a higher than average amount of 'healthy' PSA floating around. 


 


If it does recur, I can honestly say that I will never feel he let us down .... I am more likely to feel bad that I couldn't protect him from it. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Nov 2019 at 12:58

Thanks Lynn.


Im very hard on myself as you know from past posts.


I have a question. Can one get psa bounce after SRT as well as primary RT?


Thanks

User
Posted 07 Nov 2019 at 18:34
Quote:
Quote:


 


 


If it does recur, I can honestly say that I will never feel he let us down .... I am more likely to feel bad that I couldn't protect him from it. 



unlike me Lynn. I sense the very experienced surgeon I had was possibly focussing too much on side effects results. I say this as I had a focal breach so have always wondered why he saved both sets of nerve bundles. 

User
Posted 07 Nov 2019 at 21:03
I don't understand your post Bri - I was saying that I will never feel that John let me or the family down.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Nov 2019 at 22:12

Sorry Lynn. I thought you meant your oncologist ๐Ÿ˜

User
Posted 08 Nov 2019 at 08:42
One good bit of news. My wife came back all clear for her tests. A ray of sunshine to a daft old codger.
User
Posted 08 Nov 2019 at 08:43

That’s great news about your wife. Glad to hear it.

Ido4

User
Posted 08 Nov 2019 at 19:38
One less thing to worry about ๐Ÿ‘
User
Posted 08 Nov 2019 at 20:55
Great news x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2019 at 21:51
Yes. Itโ€™s my job to fall apart not my wifeโ€™s ๐Ÿ‘
User
Posted 21 Nov 2019 at 14:30

Fully expect to get a slap but here goes


Have had persistent neck pain in the right hand big musle that runs from the base of the skull to the shoulder muscles and it hurts like hell when I lean my head back and to the right. I also get a lot of referred pain in that area from IBS and in my ear and surrounding areas (it goes when I go if you get what I mean). I also had a viral infection about a month ago that made my neck and shoulders really bad.


Also feeling really tired a lot of the time at the moment.


Correct me if I am wrong but there is no chance with where I am that this is any form of met involvement?

Edited by member 21 Nov 2019 at 15:06  | Reason: Not specified

User
Posted 21 Nov 2019 at 16:53

It’s really hard to deal with pain and not link it with PC.  I doubt it is met involvement but I’m no expert.....

Ido4

User
Posted 21 Nov 2019 at 19:11

Well I also went to the gym four or five days ago for the first time in ages and since then have felt off. Am now shivering and have a headache. I suspect it is so tied together. I think my immune system is a bit pants.


Could be Lupus.


 


House joke ๐Ÿ˜‚

Edited by member 21 Nov 2019 at 19:12  | Reason: Not specified

User
Posted 21 Nov 2019 at 21:28

Hi Pete


Read your post and thought I have got virtually the same symptoms. Last year I had an issue with my left shoulder and this turned out, after a thorough exam by my GP followed up by an ultra sound at the local hospital, to be a case of impingement syndrome where a piece of cartilage get trapped. Physiotherapy resolved the issue.


Fast forward to September this year and I have very similar symptoms to yourself but in my right shoulder. The soreness starts in the lower right side of the back of the skull and radiates into the shoulder and on into the back. Certain movements, like taking off a jacket, are agony and yet other movements like using the arm to carry heavy shopping cause no pain at all. In short, it's only if the joint is moved in certain planes that the excruciating pain   occurs.


I have just had a raft of scans including a bone scan not because of this but because my PSA is rising again after EBRT so I'll know soon enough. My gut reaction is the pain is entirely dependent on which way I move. I suspect a met type pain would be constant?


Anyway, hope it's nothing too ominous. I suspect it's something unrelated but I get the "OMG it's spread to my bones" thought exactly.

User
Posted 21 Nov 2019 at 21:45

Cheers for the info


Well I reckon on sober reflection it’s a combination of things


My physio says my neck is wearing a bit
When I drink red wine or too much if any alcohol I get inflamed
When I overeat I get ibs
My recent virus (returned?) made all my neck and shoulders very sore
I really overdid it at the gym
It hurts when I move it not all the time
It hurts when I poke certain muscles


I’m talking myself into accepting I’m falling apart and need to sort things out a bit


P

Edited by member 21 Nov 2019 at 21:46  | Reason: Not specified

User
Posted 21 Nov 2019 at 21:56
Wear and tear is a big factor. Bit like an old car with dodgy suspension and a few unexplained leaks LOL!!
User
Posted 29 Jan 2020 at 10:00
Next test in a few weeks. I feel somewhat detached but know I have suppressed my anxiety rather than getting rid of it. Still working on accepting my future will be what it will be. Being off work has given me too much time to think.
User
Posted 29 Jan 2020 at 10:15

Pete next test in a week. Then telecon with onco nurses a week after. I do cope quite well with it all, just wondering which side of .2 I will be this time.


Thanks Chris

User
Posted 29 Jan 2020 at 11:35
Yes, it is frustrating when the numbers go up and down making you wonder which way the dice will fall. I have to work hard on not catastrophising the whole damn situation. Ironically, the worry is more exhausting than the bloody disease!

Cross fingers for you!!
 
Forum Jump  
©2024 Prostate Cancer UK