just asking

User

Posted 22 Apr 2020 at 09:18

Should I be worried..

DX in Jan 2016....T3-4N0M0...told at the time still in capsule but heading to the bladder.

Onco started me on Zoledex every 3 months, offered 6 cycles of chemo and 37 sessions of Radiotherapy and to stay on HT for 2 years after RT...

In Oct 2018 psa was 0.03....

in April 2019 psa was 0.05 testosterone had not started to recover

In Oct 2019 psa was 0.172 bit of a big jump......................Testosterone 9.5 so coming up

In Apr 2020 psa is 0.57 quite a big jump I'm thinking...............Testosterone now up to 13.5

Should I be worried by the big jump in PSA value and how quickly it's going up....I know I have to 2.03 with the psa before we know its back.....

Or should I be thinking it's back....or could the rise so quickly be because of my Testosterone rising as well?

Your thought son this would be greatly appreciated .

Shaun

User

Posted 22 Apr 2020 at 11:09

It's really good you have the testosterone levels too, most people don't during the recovery period after hormone therapy, but it's really useful to explain what's going on.

It is expected that PSA will rise as testosterone recovers. You still have a prostate, and it will still work to some degree after radiotherapy as testosterone takes the breaks off, so this is completely expected.

Your testosterone is now within the normal range, although it could still double in value, depending what your normal level is. PSA won't follow that linearly, but even if it doubles (which would not be surprising), you are still well below your safe limit.

From the information you've given, you look fine, and on the expected path.

User

Posted 22 Apr 2020 at 14:20

Hi Shaun, did you ask to come off HT or did your Onco recommend that you come off after the two years?

User

Posted 22 Apr 2020 at 14:48

Hi JasperM....I was only put on it for two years as I was on curative treatment

User

Posted 22 Apr 2020 at 15:50

Don't Know whether your PSA tests are being monitored by your Oncologist but if your PSA test which seems to be due in Oct shows escalation, I would ask your Oncologist's opinion.

I think the addition of your Gleason scores in your Bio must have been done by Diane Abbott!

Barry

User

Posted 06 Oct 2020 at 18:56

I can see why you would be concerned although it could still stabilise - but why are you seeing the urologist rather than the oncologist?

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

User

Posted 18 Jan 2021 at 10:57

You evidently have recurrence, so I would seek advice from my oncologist about my cancer, and limit discussion with my urologist to the subject of my waterworks.

Best of luck.

Cheers, John.

User

Posted 18 Jan 2021 at 11:33

I don't think there is much you can ask or do at this point Shaun - the oncologist has clearly stated that she will not see you again until your PSA reaches 4 so there is little point your urologist trying to refer you back or arrange scans himself.

You don't definitely have a recurrence at this point.

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

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User

Posted 22 Apr 2020 at 11:09

It's really good you have the testosterone levels too, most people don't during the recovery period after hormone therapy, but it's really useful to explain what's going on.

From the information you've given, you look fine, and on the expected path.

User

Posted 22 Apr 2020 at 14:20

Hi Shaun, did you ask to come off HT or did your Onco recommend that you come off after the two years?

User

Posted 22 Apr 2020 at 14:48

Hi JasperM....I was only put on it for two years as I was on curative treatment

User

Posted 22 Apr 2020 at 15:50

Don't Know whether your PSA tests are being monitored by your Oncologist but if your PSA test which seems to be due in Oct shows escalation, I would ask your Oncologist's opinion.

I think the addition of your Gleason scores in your Bio must have been done by Diane Abbott!

Barry

User

Posted 06 Oct 2020 at 13:48

Well my PSA have gone up twice since my last post in April when it was 0.57.

In July it was 0.91

Yesterday Oct...1.5

I know it can get to 2.03 and be ok but should I be concerned about the speed with which is rising....my next PSA will be in Jan when I again see the Urologist.

The PSA in July was done as the Urologist had wanted to see me 3 months after the July PSA, but then cancelled the appointment till Jan 2021

Am I right to be concerned or is there still a chance it won't hit 2.03

Shaun

User

Posted 06 Oct 2020 at 18:56

I can see why you would be concerned although it could still stabilise - but why are you seeing the urologist rather than the oncologist?

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

User

Posted 07 Oct 2020 at 06:49

Hi Lynne, I am seeing the Urologist because I kept getting prostate infections and my Dr referred me there.

Not had one for quite a few months now though.

The Oncologist discharged me when I got to the end of the Zolodex injections ( two years after Radiotherapy ) saying that I did not need to see her again unless my PSA went over 4 .

Shaun

User

Posted 18 Jan 2021 at 10:20

Morning all.

Just been for my latest PSA test.....by my calculations the way it has been going up every 6 months it will be somewhere just over 2.5.....

2.03 is my cut off point......

I have an appointment with the Urologist ( been under him as I keep getting prostate infections )

what questions should i be asking?

Will he send me for scans if my PSA has gone where I think?

My Oncologist discharged me in October 2018.....saying she would not see me again unless my PSA got to 4.

Your thoughts are welcomed.....

My mind is in overdrive with worry at the min.

Shaun

User

Posted 18 Jan 2021 at 10:57

You evidently have recurrence, so I would seek advice from my oncologist about my cancer, and limit discussion with my urologist to the subject of my waterworks.

Best of luck.

Cheers, John.

User

Posted 18 Jan 2021 at 11:06

First, you need to get your prostate infections sorted out, as your PSA readings are meaningless if you have a prostate infection, or even a UTI.

Can you explain what the symptoms of the prostate infection are, and what tests and treatments you've had for it? Not all urologists are any good with prostatitis.

If PSA is still above your cut off point 6 or more weeks after prostate infection has been cleared, then you need some further investigation.

User

Posted 18 Jan 2021 at 11:33

You don't definitely have a recurrence at this point.

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

User

Posted 19 Jan 2021 at 10:37

Hi Andy.

I first got diagnosed with prostate infection soon after my biopsy.....

I started with a dull ache in the groin area with what felt like a burning sensation going down the inside of my thighs...my own Dr diagnosed a groin strain, my mcmillan nurse said she did not know what it could be, I rang the specialist nurses on here and she said go back to the Dr , say you have spoken to me and that we suspect you have prostate infection and told me which antibiotics to ask for.......did this and it cleared up several weeks later.....as it kept happening my Dr sent me to the Urologist.

As my orgasms were totally dry, he said he could not test for it but to continue taking antibiotics as and when it flares up.

I have an appointment with him next Monday...had my psa test the other day.......with yet another episode..

Shaun

User

Posted 21 Jan 2021 at 16:18

Got my PSA result today before I have a telephone consultation with the oncologist on Monday.

PSA now 2.4.....my cut off is 2.03.

Testosterone still going up...was about 13 at last test...it's now gone up to 19

Still got a bit of prostate infection.

Let's see what the Urologist says Monday

Shaun

User

Posted 26 Jan 2021 at 10:13

Spoke to the urologist yesterday......

He is changing the antibiotics that my GP has me on....got to try these for 2 weeks,

if that clears it up, have psa retested 4 weeks after that.....

The thing that kinda worries me is that he is talking about starting intermittent HT...

I asked about scan and he replied that he did not think it would show up at that score.

as previously stated I can go back to the Onco when it hits 4....by my thinking that will be at my April 6 monthly test so I will get a referral back to her.....had/have a lot of faith in her.

Shaun

User

Posted 26 Jan 2021 at 11:05

I would definitely push for a scan before more treatment, to see if there's anything outside the prostate. If you still have a prostate, it is difficult to know at what point a scan might show something. For a PSMA PET scan, you ideally want 0.5 more than your prostate is producing, but you don't know how much is coming from your prostate, so there's guesswork involved.

While you have a UTI or prostate infection, your PSA results are meaningless.

User

Posted 06 Feb 2021 at 10:20

Just got a copy of the letter that the Urologist sent to my Dr following my phone consultation.......

just saying PSA is at 2.4 and that he is not sure if that is because of a prostate infection, and that he is treating it with 2 wks of antibiotics and a follow up PSA 4 wks after that.......

pretty much what I already know.......

at the end of his letter he writes......." Interestingly his testosterone levels has come back to normal "...

Is there any reason that that would mentioned in that way?

Testosterone is now 19

Shaun

User

Posted 10 Mar 2021 at 13:39

Hi all.

Just got my latest PSA result.....3.7.

It has risen from 2.4 7weeks ago.

7 weeks ago, as I had symptoms of prostate infection, the urologist put me on a fortnight of antibiotics and told me to get a retest done 4 weeks after I finished them.

Unfortunately i have had to go back to the Dr ( my GP ) twice for more antibiotics as the infection only seemed to clear up for a few day at the end of each course...........I still have the symptoms of an infection.

Could the fact that it looks like I am still fighting a prostate infection be the reason that my PSA has gone up to 3.7?

My Oncologist said when she discharged me that I could go back to her if it gets to 4......should I get my GP to refer me back......the way it is going up, my PSA will be over 4 in 4 wks,

or do I see what the Urologist has in mind re the infection?

Shaun

I have my next PSA booked in 4 wks, this is one of my 6 monthly checks

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