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User

Posted 11 Feb 2020 at 17:57

Bullocks - sorry to see this.

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

User

Posted 11 Feb 2020 at 22:19

Sorry to see your latest result Chris, hope you get some more positive news in your telecon.

Arthur

User

Posted 12 Feb 2020 at 07:41

Good luck today Chris. x

User

Posted 12 Feb 2020 at 15:29

Hi Chris, just picked up this thread, sorry to read your PSA has been on the rise. You really don't deserve this cr*p mate! Stay strong & I hope things improve soon.

All the best. Steve

User

Posted 12 Feb 2020 at 16:16

Sorry to see this rise Chris. Still in the below 1 club though. Hope the conversation the oncologist nurse is positive

Bri

User

Posted 12 Feb 2020 at 17:49

Sorry you now have more to worry about Chris. Hope the appointment goes as well as possible

Good luck

Cheers

Bill

User

Posted 12 Feb 2020 at 19:01

Hi Chris,

Sorry to hear about your PSA rise. Any news like this is not what you want to hear.

Thinking of you both.

Steve x

User

Posted 12 Feb 2020 at 22:13

I always prefer to get my PSA result before my onco appointment so this time I used my GP PSA request form for the PSA and the hospital form for the testosterone. As it happens the nurse took two lots of blood at the same time and both got sent together and tested , one was 0.33 the other 0.34 so no surprise there.

Getting the result from the GP was like pulling teeth, I suspect they had the result but it had not been reviewed by a GP. Onco nurse has now said send her a text the day after my blood test and she will send it by text so I get it before our appointment. She was relieved that I had already got the bad news before out conversation.

So I had telephone appointment with onco nurse, we discussed scans and agreed that at 0.33 it was probably too early for a reliable test and they would normally wait until at least 1.0. Based on the stories on here I am quite happy with that. Looking at my past results she calculated my doubling time at 5.5 months so I should be in whole figures around a year from now. Next test in four months, when we will review doubling times again. We only have PSMA scans at our hospital, but I have private medical insurance if other scans are recommended. Radiation treatment to detected areas would be the next treatment if anything relevant is detected.

With regard to dyes and substances they inject is there a limit to how many or often you can have scans.

At this point if it comes to choices I do not want to go down the HT route , enough is enough.

That's about it, I feel more upbeat than when I got the result yesterday.

Thank you all for the support.

Thanks Chris

User

Posted 13 Feb 2020 at 05:54

Chris I have had about 6 CT now with contrast and about 5 bone scans with tracers. Also 2 PET with their tracers. I’m just told the benefit outweighs the risk but yes it’s bad for your kidneys. A full body CT is equal to 7 yrs of natural radiation. It seems I’m not going to be offered any targeted RT. Just systemic treatment maybe starting in a week depending on those latest scan results. Not had a psa done recently but expected at 400. I too have very little desire to start HT tbh mate

User

Posted 13 Feb 2020 at 06:56

Thanks for the info, I do have CKD3, it has not caused me any problems, apart from not being able to have certain medications.

I was reluctant to have surgery even up to sitting on the anesthetic table , but went ahead with it. I was reluctant to have RT but got talked round. Both have left me with some tish problems.

Old age is catching up with me , I can cope with the catheters and changes, tethering my self to a night bag every day, emptying leg bags and the frequent urine infections, but to then have the issues associated with HT, I think not.

Hope your own treatment goes well and thanks for your support.

Thanks Chris

Edited by member 13 Feb 2020 at 06:58 | Reason: Missing word

User

Posted 13 Feb 2020 at 19:51

Hi Chris, they also told me scans would be done at 1.0

Hopefully local treatment to any identified mets when needed will hold it at bay

Bri

User

Posted 13 Feb 2020 at 21:07

Went to GP today for BP check. The nurse tells me I haven't got BCR until PSA has reached 1, that's why they don't scan until it gets to 1. Think it's time to change surgery.

Thanks Chris

User

Posted 13 Feb 2020 at 22:20

Dear God! 🤦‍♀️

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

User

Posted 14 Feb 2020 at 08:26

You wonder where they come up with these ideas when there is a fairly clear statement if what defines BCR after prostatectomy. Ridiculous.

My GP signed off my 0.3 initial recurrence PSA as within normal range, hadn’t even looked at my notes!

Ido4

User

Posted 14 Feb 2020 at 09:09

Originally Posted by: Online Community Member

Went to GP today for BP check. The nurse tells me I haven't got BCR until PSA has reached 1, that's why they don't scan until it gets to 1. Think it's time to change surgery.

Thanks Chris

The other year one of my surgery nurses heard me asking the receptionist for a blood form for my PSA test. The nurse said you don’t need to do a PSA test as you haven’t got a prostate. It really makes my blood boil

Bri

User

Posted 14 Feb 2020 at 14:11

😱

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

User

Posted 15 Feb 2020 at 09:35

I was told also that they won’t do anything until or if it reaches 1.0 but did not say anything about BCR.

User

Posted 16 Feb 2020 at 12:25

Tried messaging you Chris but your inbox is full

User

Posted 28 Apr 2020 at 08:02

Six years ago today I had my prostate removed, three years ago today I was in the middle of salvage RT. Now, my PSA is on the the rise again and I will have a fancy scan in about a year. This was definitely not in the plan.

Thanks Chris

User

Posted 28 Apr 2020 at 10:21

Sorry to read your PSA is rising again Chris. What is your current level and why is it a year before your “fancy” scan?

Ido4

User

Posted 28 Apr 2020 at 10:49

Ido4

Last reading in February this year was 0.34 / 0.33. Onco nurse estimated doubling time at around six months, so in a year it will be above one. The theory is that once above 1.0 the scan may give a better chance of detection ? Next PSA test is early June so we are still tracking it's progress.

Thanks Chris

User

Posted 03 Jun 2020 at 11:18

Had blood test at 9.20 yesterday at GPs and got a text message from onco nurse at 10.40 today. Rise from 0.33 almost four months ago to 0.41. Tele consultation with onco nurse in a week.

Thanks Chris.

User

Posted 03 Jun 2020 at 12:12

Hi Chris

Sorry to hear this. Keeping fingers crossed for you.

User

Posted 03 Jun 2020 at 12:15

Any rise isn’t good Chris but hopefully it won’t start shooting off the scale anytime soon. I suspect the tel conversation won’t bring any surprises. Another test in 4 months?

Take care

Bri

User

Posted 03 Jun 2020 at 12:19

Doesn’t seem too bad Chris. Keep the faith

User

Posted 03 Jun 2020 at 15:42

Okay, breathe. I don't know where the nurse got a doubling time of <6 months from but I have just put all of your results for the last 2 years into the MSK calculator and your doubling time is 17.1 months with a PSA velocity of 0.1/year

On one hand that gives you lots of breathing space but on the other, that seems to me to be a very long time to wait for a scan. Perhaps it would be better for peace of mind to push for a scan sooner rather than later?

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

User

Posted 03 Jun 2020 at 16:44

Lyn

Thank you very much for that, when I looked at the results this morning I couldn't get my head around the doubling time. I will talk to her about the scans and might see if I can get a call with my onco who some of know of from the Mill.

Never quite sure what a safe PSA is for someone who is post surgery and SRT.

Thanks to you all for your support.

Thanks Chris

User

Posted 04 Jun 2020 at 09:01

Chris, it doesn’t look too bad from where I am but any rise is worrying, it’s a case of where are the little sods and what are they doing!
Keep strong and ask Onco for that scan, I asked and got ignored, Onco booked one, and he got ignored by Scan team!

Don't let it get as bad as mine, through lack of help from Oncology team. (Mets in 22 places)

Chris.

Edited by member 04 Jun 2020 at 09:12 | Reason: Not specified

User

Posted 04 Jun 2020 at 09:33

Hi Chris, sorry to hear this. Hope you can get a scan organised to see what’s going on.

Ido4

User

Posted 04 Jun 2020 at 09:37

Hi Chris

Hope this development doesn't cause you to much worry. Hope you get a scan to put your mind at rest and then hope the results are favourable.

Good luck

Cheers

Bill

User

Posted 07 Oct 2020 at 19:45

I was expecting a rise in my latest PSA but it has stayed at 0.47. Obviously please but with the result, but. What is happening when you are not having any treatment and your normally rising PSA stays at the same level for a few months. Three years post SRT.

2/10/2019 PSA 0.19

10/2/2020 PSA 0.34

3/6/ 2020 PSA 0.41

10/7/2020 PSA 0.47

1/10/2020 PSA 0.47

Thanks Chris

User

Posted 07 Oct 2020 at 20:00

Have you had any scans recently Chris?

I know it can be difficult with the current situation.

Ido4

User

Posted 07 Oct 2020 at 20:21

Ido4

I have got a bone and CT scan coming up in the next few weeks. Saw my onco today who came across as very anti pet and psma type scans at anything below a PSA of 8.

Thanks Chris

User

Posted 07 Oct 2020 at 21:54

I think Ulsterman was the luckiest with his scans. Unless you have a psa over three you may see nothing with any PET scans. I had both Choline and Gallium 68 at high psa which showed zero. It took my psa to be over 100 before they saw any spread with normal CT and bone. Unless they are offering them for free I wouldn’t pay at your levels. But obviously up to you. I know one mans psa is different to another’s. I’ve had at least 6 bone scans and believe me when something is seen then it is seen - and I mean everywhere ! If you can get a free scan then push , if not trust the normal route.

Insane to go from nowhere to multiple mets in most vertebrae in just 6 months , but not entirely unexpected tbh. Good luck mate !

User

Posted 07 Oct 2020 at 23:23

I did bring up your type of situation where scans do not pick up anything. The scans are free and are a possible prelude to other things.

Thanks Chris

User

Posted 04 Nov 2020 at 20:53

Latest PSA slightly up @ 0.51, bone and CT both clear. Accepted onto a double blind PCa vaccine trial.

Thanks Chris

User

Posted 05 Nov 2020 at 00:39

Sounds like good news all around!

User

Posted 05 Nov 2020 at 22:07

Sorry to hear about the rise Chris but as you say it’s a slight one

What’s the trial you have been accepted for

Bri

User

Posted 05 Nov 2020 at 23:26

Brian

It's Rhovac -002 phase 2 double blind vaccine trial. There was a possible hiccup this afternoon with one of the criteria for joining the trial. Hopefully get it sorted tomorrow.

Thanks Chris

User

Posted 06 Nov 2020 at 00:25

Rate of rise is slow which must be a relief mixed in with a bit of disappointment? The trial sounds interesting - the idea of giving a vaccine to someone that has already had radical treatment could be a game changer in the future!

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

User

Posted 06 Nov 2020 at 01:59

Hi Chris,

Sorry to hear about the rise but I hope everything goes well for you and the rate of rise remains slow.

I hope you manage to get on the trial and it helps you in some way.

Take care and stay safe during the lockdown.

Steve

User

Posted 06 Nov 2020 at 14:46

Well what a ****ing tish today has turned into, after being told 2 days ago I was on the trial. I have just had a call to say sorry you are not eligible because of doubling time. Particularly annoyed because I asked and was told my doubling time was okay.

Thanks Chris

User

Posted 06 Nov 2020 at 22:08

Sorry to hear that, Chris

Can you challenge or ask for an exception?

User

Posted 06 Nov 2020 at 22:45

Sorry to hear this Chris. Thoughts are with you ok. Still low figures !

User

Posted 06 Nov 2020 at 22:45

Pete

I don't think they read the criteria correctly before inviting me onto the trial. There are only going to be six people in the UK on the trial.

Thanks Chris

User

Posted 20 Nov 2020 at 20:09

I think they are too damn conservative on trials

User

Posted 22 Nov 2020 at 20:42

Pete ,There may be developments.

Thanks Chris

User

Posted 22 Nov 2020 at 20:46

For someone like me ,no prostate and a radiated prostate bed, would you expect a urine infection and or antibiotics to affect PSA readings.

Thanks Chris

User

Posted 03 Dec 2020 at 13:45

Now totally confused. No treatment since SRT 2017, a couple of UTIs and a few antibiotics over the last 12 months.

2/10/2019 PSA 0.19

10/2/2020 PSA 0.34

3/6/ 2020 PSA 0.41

10/7/2020 PSA 0.47

1/10/2020 PSA 0.47

9/10/2020 PSA 0.51

3/12/2020 PSA 0.38

Thanks Chris

Edited by member 03 Dec 2020 at 18:18 | Reason: More info

User

Posted 03 Dec 2020 at 17:15

Hope this is the beginning of a downward slope Chris. Maybe the rises were/are infection.

Good luck

Cheers

Bill

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