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User
Posted 03 Dec 2020 at 21:46

Sounds good Chris - going in the right direction 


Arthur

User
Posted 04 Dec 2020 at 02:31

Hi Chris, 


Good to hear that it's not racing away.  


I do find that my PSA varies quite a lot sometimes.  I really don't know why but if it is just a gradual rise then that can be very reassuring. 


I hope this current trend continues. 


All the best, 


Steve 

User
Posted 04 Dec 2020 at 10:00

I’m not surprised you are confused Chris. But PSA seems steady so that is a positive.


All the best.

Ido4

User
Posted 11 Dec 2020 at 08:39

7 years ago today I had a trus biopsy, I didn't think I would be facing more treatment seven years later. 10 years ago my GP missed a PSA of 6.9. Twenty years ago I started with terminal dribbling.


Still here and still moaning.


Thanks Chris

User
Posted 11 Dec 2020 at 09:13

Hi Chris, 


Life never quite seems to turn out as you expect it to. 


In the Spring of 2014, I never expected to be told in June that I had Cancer and in March 2018, that it was now incurable. 


You could have never imagined the operation you had to cure the Cancer would cause you so much trouble in the years that followed.


No one deserves the problems you've suffered over the years and I admire the way you've coped with it.


Whatever life has thrown at us, we're still here. 


I hope you have a very Happy Christmas and better times ahead. 


Steve 


 

User
Posted 11 Dec 2020 at 09:51
Moan away Chris , you really have had it way worse than most with complications! I think the incontinence would have driven me insane. Thanks for all your input over the years. It means a lot to all.
Have as happy an Xmas as you can
Chris
User
Posted 11 Dec 2020 at 10:14

Long may you still be here Chris, moans and all!


 

Ido4

User
Posted 12 Dec 2020 at 09:30
Hi Chris
Also glad you're still here I hav'nt noticed any moaning, just constructive advice, help and support as far as I'm concerned.
You have had to put up with more than most regarding side effects and complications and have delt with all the sh#t this awful desease had thrown at you admirably and have used your experiences to help and advise so many others on here.

I hope your PSA stays under control and wish you all the very best.

Many thanks.

Cheers
Bill
User
Posted 12 Dec 2020 at 14:35
When you are too ill to moan, that's when you should start to worry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Mar 2021 at 17:34

11/02/2020 0.33


03/06/2020 0.41


10/07/2020 0.47


09/10/2020 0.51


03/12/2020 0.38


01/03/2021 0.62


 


Last few PSA results, I am beginning to think that the 0.38 was somehow corrupted, It was checked by my onco nurse and the trials team so I know it was not a simply a typo. 


I had finished a course on antibiotics 10 days prior to the test. It was done at the hospital as opposed to my GP but the samples do go to the same hospital lab.


4 years post SRT and apart from the 0.38 there has generally been a stall or rise.


Have telephone conversation with onco nurse tomorrow.


Thanks Chris

User
Posted 02 Mar 2021 at 19:16
I suppose the antibiotics could have suppressed it a bit?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Mar 2021 at 21:13

Hi Chris,


I don't know how doubling rate works at different levels but over the last few years it looks like your psa is doubling in around a year.  So in a  year it could be 1.2 which doesn't sound big.   I also don't know what other treatments they might offer.  A doubling time of a year isn't normally classed as high as far as I know as it will take 5 years to reach 20 which isn't too high relative to some.  So hope it works out.  All the best Peter

User
Posted 03 Mar 2021 at 11:12
Still hanging in there Chris and still quite some time away from further treatment. Gave my blood today. Doesn’t get any easier does it

Bri
User
Posted 03 Mar 2021 at 11:53
PSMA scan an option Chris?
User
Posted 03 Mar 2021 at 21:04

Thanks Guys 


Lyn, looking back at my results a previous reading stayed at exactly the same level as the one before, again after a course of antibiotics. 


Peter , I expect HT would be the next option unless a scan showed a definite source. I have seen guys getting a lymph node treated because a scan picked up a suspected source 


Brian, fortunately I don't seem to get PSA anxiety any more, it is what it is, I would just love to know what is going off inside.


Francij1,  Onco nurse ran through detection figures for scans at lowish PSA levels and I don't think I am there yet.


The plan is to keep at 3 monthly PSA testing. 


Thanks Chris

User
Posted 03 Mar 2021 at 22:18
Hey mate I get where you’re at regarding not bothering about psa anxiety. Mine is at 990 and a year since testing , and with 3 palliative courses of RT to spine and ribs to boot ! As you say it is what it is. People have died with a psa of 10 whereas I’m still kicking mostly ! But don’t panic ok. Make sure that psa is at a level where the scan will be fruitful and not wasted.
For what it’s worth I’ve not posted for a month and due HT jab this Friday ( the second one ). Yes a drop in libido but not gone. No function gone. Just the bl-** dy night sweats. Zero during the day. Only at going to bed and then waking. No bother really. Just like being in a hot country at present. I had no other choice left on the table and had to make the decision , but I guess I made it at last. My councillor said I wasn’t scared enough of the cancer because I felt so well all these years , but in the end I knew my back and breathing weren’t good and went for it. Day by day and week by week mate.
All my best
Chris
User
Posted 04 Mar 2021 at 00:04
Stan died with a PSA of 1.2, CJ 😥
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Apr 2021 at 07:51

Seven years ago today I had my prostate removed, I had hoped that it would eradicate my cancer. 12 visits to theatre to sort a stricture and remove three hem o lock clips  and I finished up with a catheter for life. 4 years ago we had another bite at the cherry and the RT destroyed my bladder. I still have cancer, but still here still moaning. If only I had a pound for every time someone says "but you do look well". 😀


As always, thank you for all your support and advice.


Thanks Chris

User
Posted 28 Apr 2021 at 08:13

That’s all I get all the time Chris — ‘ you look so well , !
I guess we should be grateful for small mercies. Congratulations on 7 yrs. My six yrs is June 15th.
Just goes to show that mostly this gets you in the end one way or another.
I can honestly say I don’t know how you’ve coped. Things have been so awful for you. I think I’d have caved in by now with all your issues. Hats off to you and for your selfless councel for others. Stay strong mate

Edited by moderator 28 Apr 2021 at 19:49  | Reason: Not specified

User
Posted 28 Apr 2021 at 09:56

It’s great to still have you here Chris. 

Ido4

User
Posted 28 Apr 2021 at 15:42
Happy anniversary! Wishing you many more!
User
Posted 29 Apr 2021 at 18:21
Many more years yet Chris 👍
User
Posted 01 May 2021 at 12:41

Originally Posted by: Online Community Member


 Hats off to you and for your selfless councel for others. Stay strong mate



Here here Chris. Thanks for all the advice re strictures and Catheterising


Happy anniversary and here's to many more


Cheers


Bill


 


 


 


 


 


 

User
Posted 06 May 2021 at 19:50

Eventually I got accepted onto the Rhovac vaccine trial. I had my first injection this afternoon but being a double blind trial I don't know if I had the vaccine or just water.


Thanks Chris

User
Posted 07 May 2021 at 22:05

Chris remind me again what the trial is and what the eligibility requirements are


cheers


Bri 

User
Posted 07 May 2021 at 22:36

Bri 


Link to trial details below. In simple terms the aim is to prevent the spread of cancer following BCR.


It is a double blind trial which means you may get the medication/vaccine or water.


https://clinicaltrials.gov/ct2/show/NCT04114825


Although some of the criteria is quite strict, there are some items that are not quite as strict.


Thanks Chris


 


 


 

User
Posted 08 May 2021 at 14:21

I wouldn’t have qualified for this trial as my PSADT was less than 3 months at BCR, wonder why they have excluded that. 

Ido4

User
Posted 08 May 2021 at 22:01

Ido4 


Just my thoughts, it is a double blind trial so some guys will not be getting active treatment. During the trial if the PSA rise gives cause for concern then participants are removed from the trial and revert back to appropriate treatment. 


Only guessing.


Thanks Chris


 

User
Posted 10 May 2021 at 12:32
Cheers Chris. I wouldn’t be eligible either as my BR was 5 years after treatment
User
Posted 06 Oct 2021 at 17:32

Hmm 


Think I must be on the placebo, another rise from 0.73 to 0.86 in 56 days. I do have UTI and antibiotics.


Thanks Chris


 

User
Posted 07 Oct 2021 at 08:47
That's a shame Chris, is there any change in the velocity? Your past figures are a bit all over the place!

Have you thought about PSMA scans? If you have a recurrence in the prostate bed you could perhaps have local ablative treatment?

Did they treat your pelvic lymph nodes with the SRT? Maybe scope for further RT there too?
User
Posted 07 Oct 2021 at 19:03

Franci 


Thanks for the reply.


Apart from a pre surgery rise, I think my velocity is at its highest yet. I do get ct  and bone scans next month as part of the trial but they like to use the same time of scan as previously used. 


Pmsa or Pet scans are an option, certainty when the PSA rises a little bit more.


I don't think lymph nodes were done but I will check, in view of my history I certainly want avoid any more RT. Will ask about the ablative treatment when I see the onco next month.


Thanks Chris


 

User
Posted 08 Oct 2021 at 12:58

Sorry to read this Chris. I guess you’ll know more after the next scans.

Ido4

User
Posted 01 Dec 2021 at 15:37

As I am under oncology and also on a trial I normally get PSA under the direction of oncology.


Out of the blue my GP sent me a PSA bloods form. I duly had the blood test and got a text message this morning saying " The result of you recent test is normal and no further action is required at this stage.".


The psa was 0.99. I have no prostate and had salvage RT four years ago. Fortunately I know what is happening and my situation. 


Another error by a GP perhaps ?


Thanks Chris


 

User
Posted 01 Dec 2021 at 16:06
I had the same issue, total incompetence!
User
Posted 01 Dec 2021 at 16:44

Just had the following reply from my GP surgery following a request to explain normal 


"Hi Chris, 


 


This is in regard to your recent PSA - Prostate Specific Antigen level. 


 


Your result was 0.99 and any readings under 5 are considered a normal reading. 


 


I hope this helps. 


 


Many thanks, "


 


Thanks Chris

User
Posted 01 Dec 2021 at 18:45
Dear God - what hope is there?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Dec 2021 at 21:38

I had the same experience when PSA rose in 2016. They just seem to look at your age and PSA figure without allowing for your medical,history. I think it’s shocking on a few fronts. 

Edited by member 01 Dec 2021 at 21:39  | Reason: Not specified

Ido4

User
Posted 01 Dec 2021 at 22:44

I've seen two cases of this just recently.


One guy was several years after RP, and proudly saying his PSA was 0.7 (and 0.4 the year before) and his GP says it's fine as it's <3.0


Another where a guy has had a RP and his PSA is going 0.14, 0.16, 0.18, and his GP says nothing to worry about, again because it's a long way below 3.


I was in a meeting with a urology consultant and several patients last week, and one of my comments was most prostate cancer patients who are more than a month into their diagnosis will know more about prostate cancer than their GP. The consultant laughed and said how true.

User
Posted 05 Dec 2021 at 09:36
I had a similar situation with the nurse at my Practice!

He kept telling me it was a pass i.e below 3.0!
Initially wouldn't give me the actual number over the phone. When I pressed him, he eventually did give me the number, except he had no idea what the "LESS THAN" symbol was!! Absolutely pathetic, it's really worrying, what do they teach at school and nursing training!!

I did take it up with my Doctor.
User
Posted 06 Dec 2021 at 22:48
I’ve shared my experience before. A couple of years ago I was at the GP reception asking for a blood form. The nurse in the background said I did t need a PSA test as I didn’t have a prostate
Beware….they walk amongst us
User
Posted 18 Dec 2021 at 13:13

Eight years ago today I got an unwanted early Christmas present, " you have prostate cancer".


Had surgery , had SRT, lost lots of things, gained a few things.


Still here, still have cancer but I can still smile.


Merry Christmas to you all.


Thanks Chris

User
Posted 18 Dec 2021 at 16:05

Merry Christmas Chris, hope you are well and have a nice time over the festive period.

Ido4

User
Posted 19 Dec 2021 at 01:22
Merry Xmas Chris.. whats the story behind the collie pup avatar?
User
Posted 19 Dec 2021 at 01:41

It was 12 years on Thursday since John was diagnosed.


Merry Christmas to you CC - let's hope that 2022 is kind to us all x

Edited by member 19 Dec 2021 at 01:45  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Dec 2021 at 07:50

Francij1 


That is Billy our Border Collie. We told our daughter we were going for a Xmas tree, when we got to the farm there were around six puppies and she picked him. He is predominantly white rather than the normal predominantly black. Now 12 years old, he helps keeps me mobile. 


Thanks Chris


 


 

User
Posted 19 Dec 2021 at 09:45
Where does the time go!
User
Posted 28 Apr 2022 at 08:04

 Today is the 8th anniversary of my prostate removal and five years from my salvage RT. Still here still have cancer.


 

Thanks Chris 
User
Posted 28 Apr 2022 at 14:52
I’m still glad you’re here mate , but sad we both still have cancer. I’m 7 yrs in June !! Stay well
User
Posted 28 Apr 2022 at 15:12

Best wishes to you both keep moving forward you are both an inspiration to all off us with this terrible desease  👍

 
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