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A rise on this test

User
Posted 08 Nov 2018 at 10:35

Just phoned surgery for latest PSA results. Receptionist said they have come back normal. I asked for the number and she said they were 0.08. My last test in April/May was <0.01 so quite an increase. So do I wait for my next 6 month test. Do I request to see the oncologist or do I request a blood test in three months time  


This result is at the stage we’re Adjuvent RT was recommended 5 years ago


Bri 

User
Posted 08 Feb 2019 at 11:36

Brian - clouds.


The dark ones are many and random, some anticipated and others when you least expect them like when you see a fit couple of your own age group enjoying life or doing something as mundane as the supermarket shop. You get the clouds descend every time a cancer advert comes on telly and when you see a collector for MacMillan out on the streets. Constant reminders of a life once free of illness and your current status cause more clouds to descend and it all becomes too much.


So how do you deal with it? You deal with it like this......


You pause. You take stock of your life. You remain thankful for all those good years you’ve had and you switch your thoughts to terminally ill children in hospital whose only ambition is to make it to a sixth or eighth birthday. To the young men and women in their 20s or 30s cut down by serious illness which means they will never reach the joys of the years you have nor see children grow or the years pass. You count your blessings and remain thankful. You do not concentrate on the old men in rude health in their 70s and 80s and do not bear grudge nor become jealous because that is deeply negative and only brings more clouds.


Above all, you realise and keep telling yourself that you are nobody special, no matter how much you might love yourself - and that every one of us will follow the same exit but at different stages. We will all pass. What we must do at whatever age we are is wring every last drop of joy from our lives no matter how dark and pessimistic the future seems - no matter how bad those consultsnt appointments go. Sometimes, the fear will overwhelm you - it often does me - then you take your mind as per previous and thank your lucky stars that you’ve made it this far in a world where a lack of opportunities for millions means an early death or starvation, or oppression, or war.


Cancer or not. We are the fortunate few. We know our fate. We don’t want it but we have the power to plan our futures however uncertain. Millions don’t and never fulfil their potential because they take life for granted. We never will. The reason is because WE ARE GIANTS.


Bazza

Nine years since DX.


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

User
Posted 08 Feb 2019 at 16:13
A very sobering thought indeed. But as we know Chris we have many men on here alone who have far outlived the ‘specialist’ prognosis/predictions

Stay strong mate

Bri
User
Posted 10 Feb 2019 at 17:44
Bri,
I know that some of the posts are awful and really show the very bleak side of cancer but please take heart in that when you search for posters with symptoms like N's, there are very few. What there are on this site are hundreds of men who do indeed "outlive" the statistics, who live long enough for the next treatment be approved and who function almost normally with similar numbers to N. N is an anomaly, he doesn't fit the boxes.
Morbid fascination is something I'm sure most posters have experienced, when things are looking bad it's sometimes hard to not look for how much worse it can get, I know I did. Then knowing how awful it is/can be, I felt more appreciation for the very little things that were good. I still get waves of resentment and anger and "it's just not b****y fair" moments and I have to talk myself down to be in the here and now with N and the kids.
I'm not always sure how my posts are taken but I mean this to be supportive in every way. Only a very tiny percentage are as awful as N's.
Sending you hugs and best wishes.
Kentish
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User
Posted 08 Nov 2018 at 11:11

Hi Bri


sorry to see that the PSA has risen albeit on a super sensitive test. If I were you i would be looking at a repeat test in 3 months to establish if there is a trend developing.


 


all the best


 


Roy

User
Posted 08 Nov 2018 at 14:35
Bri.
Sorry to read the increase. If you think the onco would only request a PSA test then you might as well have one via your GP in 3 months time.

Ray
User
Posted 08 Nov 2018 at 14:41
Thanks both. Looks like I will have to try and persuade the GP for a blood test for the end of January. He’s referred to it as normal but having said that it’s the same surgery who recorded my PSA of 20 as normal 6 years ago

Bri
User
Posted 08 Nov 2018 at 15:11

This is intriguing. I live in Coventry and my GP gave me a stack of PSA forms which I just take to my local Lloyds chemist, Zoë takes a blood sample and the next day my PSA result pitches up on my iPad app at the same time the GP receives it. So basically I can have a PSA test when I want, although I will restrict myself to three-monthly tests from now on as they have had nearly an armful of blood lately!


However, I went to Solihull Hospital this week, only fifteen miles away, and the dermatologist gave me a blood test form but there were about eighty patients waiting in phlebotomy, and even some in the corridor outside the waiting room. I repaired to a local pub for a quick one. When I got back an hour later, my number was called, and the phlebotomist was flabbergasted when I told her that I could go to a local chemist in Coventry for a blood test, and she said their form was only valid in their hospital.


I also told her that recently Zoë had difficulty in getting samples from my arm, and pointed to a throbbing vein (unfortunately not in my dick) on the back of my hand, and said “Just go in there with a butterfly needle, no problem”.


She said: “We don’t have butterfly needles here” and started mining my arm with a needle. She eventually found a sample, but I now have a massive (painless) bruise on my arm.


Talk about a postcode lottery!


Cheers, John.

Edited by member 08 Nov 2018 at 15:14  | Reason: Not specified

User
Posted 08 Nov 2018 at 16:24
We’ve talked before about super sensitive tests Bri. You are still in an AMAZING position. See your GP , explain your angst on mental issues , and ask for a test in 3 months. If I was a gambling man I’d say you’re going to live forever !!!!

If life gives you lemons , then make lemonade
User
Posted 08 Nov 2018 at 16:51

Just re- read your history Bri.. 

In view of the fact that you've already had ART and your post op histology showed a focal breech I would get another PSA test in say ..3 months time....just to see if this was just a 'rogue' one off  result...  
I'm no expert as you well know...but I wouldn't even be considering HT or anything at this stage... 
If your PSA continues to rise to a level whereby a specialised scan might be able to identify any activity in the future ..then I'd be going for that first.. 
Easy for me to say I know.. 
I agree with Chris J .... I reckon you'll live forever!  

Gulp!! ... That's bloody concerning that your surgery referred to a PSA result of 20 at the time as normal!! WTF!! 

Best Wishes 
Luther 

Edited by member 08 Nov 2018 at 17:07  | Reason: Just added a comment about a previous PSA reading....

User
Posted 08 Nov 2018 at 17:13
Cheers guys. Will see what’s happening in three months with it. Bloody typical though it’s 6 years to the day that I got the call I had PCa. I just hope this isn’t the start of that bloody treadmill again...No smoke without fire

Bri
User
Posted 09 Nov 2018 at 08:54

Interesting conversation with the specialis nurse at PCUK. Very knowledgable and supportivE. An interesting question she did ask was did anyone ie urologist/oncologist ever say what undetectable was for me. I said I couldn’t recall that conversation but did point out that the oncologist did say they would have like to have seen my post RP PSA to have been lower than 0.06. The nurse said so to them 0.06 may not be classed as undetectable. This obviously means if applying that same theory that 0.08 is not undetectable. 


But she agree that either a 3 or 6 month PSA test is the way forward


Bri 

Edited by member 09 Nov 2018 at 08:55  | Reason: Not specified

User
Posted 09 Nov 2018 at 10:25

Hi Bri,


I have discussed this matter in depth with both my surgeon and two oncologists.


The surgeon and my local oncologist said that a PSA test assay result below 0.1 is undetectable, and testing to lower than that is pointless. However the top man at the Royal Marsden Hospital who I saw only last week said that his biochemist can test down to <0.04, which his test reveals I am😁🍾


He said to beware of consecutive quarterly rises over several tests, even if they are <0.1, whereupon a PSMA PET scan would be an appropriate first step to locate the source of the biochemical recurrence, if any.


Cheers, John

Edited by member 09 Nov 2018 at 12:59  | Reason: Not specified

User
Posted 09 Nov 2018 at 11:53

Thanks John, I obviously hope it’s not the first sign of recurrance but if it is I’m not sure a scan would help as I would have run out of curative treatment options


Bri

User
Posted 14 Nov 2018 at 21:24
Actually thinking about this. Would it be worth asking for any kind of scan at this time

Cheers

Bri
User
Posted 14 Nov 2018 at 23:10
Probably not since as you point out, there are no curative options and your onco has already told you that she would not restart treatment unless your PSA got to 20
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2018 at 23:12
It is only one result- have you asked whether a) they have changed lab provìder or b) purchased new machines or c) had the existing machines calibrated recently?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2018 at 23:17

If it had risen to say 0.03 0.04 then I would suspect something like that. But from <0.01 to 0.08 seems more significant that that ☹️


Plus I would seek a 2nd opinion about the point I would need further treatment


Bri

Edited by member 14 Nov 2018 at 23:19  | Reason: Not specified

User
Posted 15 Nov 2018 at 07:25

Originally Posted by: Online Community Member
Probably not since as you point out, there are no curative options and your onco has already told you that she would not restart treatment unless your PSA got to 20


Lyn didnt J have a scan last year when his PSA had risen? Was there a specific reason for that as he would be in a similar position to me wouldnt he


 


 Bri


 

User
Posted 15 Nov 2018 at 09:11
John's PSA had gone up to 0.11 and he was crippled with back pain. The scan showed that he needed new knees 🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Nov 2018 at 10:12

Morning Bri,


Sorry to hear you're having a worrying time at the moment. Can I ask, was the blood test done at DRI or Hallamshire? The reason I'm asking is that my Oncologist at Sheffield wanted me to have all my post SRT PSA blood tests done at the same lab due to machine calibration variables. All the best mate, Paul.

User
Posted 15 Nov 2018 at 10:16
Bri.

I'm sure you have but to check , have you a PSA level you would want treatment, if needed, to start?

Ray
User
Posted 15 Nov 2018 at 11:08

I posted this in another thread but worth repeating...


http://www.yananow.org/PSAexperiment.shtml


Terry reported a huge variation in PSA levels over a 30 day period whilst not on treatment. The implication is that small sample sizes over a short period of time have a lot of noise and one needs a longer period with more samples to get a reliable PSAdt.


Not to say you don't monitor closely and take action if needed.


P

Edited by member 16 Nov 2018 at 16:07  | Reason: Not specified

User
Posted 15 Nov 2018 at 18:46

Thanks all


Paul my tests have been done at DRI for the past few years. So same lab


Ray I really have no idea. When I asked the oncologist this a few years ago she said they would look at HT when the PSA hit 20. I’m no expert but that seems high to me.


Pete the link doesn’t work. I’m aware there can be variables with super sensitive tests but <0.01 to 0.08 seems a significant rise 


I’m starting to get a bit worried now. I’m hoping I don’t need any more treatment but if I do I’ve no idea what would be best and when ☹️


Bri

Edited by member 15 Nov 2018 at 18:48  | Reason: Not specified

User
Posted 15 Nov 2018 at 21:43

Brian


You need to copy and paste into a browser. I will try and convert to a URL when I get a moment.


DONE :)


P

Edited by member 16 Nov 2018 at 16:08  | Reason: Not specified

User
Posted 16 Nov 2018 at 11:47

Bri


Never great to get a rise whatever the reason might be. As we  know heading to the next test after a fall is always easier. Prostate Pete's Yano link is an interesting read also worth following the links within the article. Easier said than done but put to the back of your mind. Thanks Chris


 

User
Posted 16 Nov 2018 at 14:05
Cheers Chris. It is difficult when you’ve started to think you may have actually beat it to then get a reading that suggests you may not have after all

Bri
User
Posted 16 Nov 2018 at 15:59

Originally Posted by: Online Community Member
Brian

You need to copy and paste into a browser. I will try and convert to a URL when I get a moment.

P


 


All you need to do is click 'edit' at the side of your post, hover your cursor over the end of the link and press enter. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Nov 2018 at 16:08

Sorted Lynn. Cheers!

User
Posted 17 Nov 2018 at 00:56

Originally Posted by: Online Community Member


Thanks John, I obviously hope it’s not the first sign of recurrance but if it is I’m not sure a scan would help as I would have run out of curative treatment options


Bri



Scans are worth it if they discover areas outside previous RT zones they can be zapped. Look up oligometastatic disease.

User
Posted 17 Nov 2018 at 02:01
The guy at the Royal Marsden said should I encounter several successive rises in PSA over several tests of whatever accuracy, then a scan ought to be the next step. I think a Choline scan is the best you can hope for on the NHS, whereas the superior Gallium 68 PSMA scan is likely to cost £2600 privately at one of the few UK centres to have the capability.

There are reports that a PSMA scan is less than half that price in Germany, and a quarter in India.

They have a PSMA scanner at the Royal Marsden, unsurprisingly as it’s the number one cancer hospital in Britain, but the Consultant there told me it’s ‘a local scanner for local people’ in an echo of the phrase from ‘The League of Gentlemen’!

So if you are wealthy enough to live in leafy Surrey, you get better medical treatment than the rest of us serfs living elsewhere. Postcode lottery again.

Cheers, John.
User
Posted 17 Nov 2018 at 10:04
Many thanks Francij and John. Your thoughts have prompted me to do another post on this subject

Bri
User
Posted 30 Jan 2019 at 21:39
Bloods given yesterday in readiness for the oncologist appointment on the 5th. Also had a ultrasound scan today as I’ve had some lower right abdomen discomfort. Internal organs fine but I have some gall stones.

So will see if the PSA has risen again and what the oncologists thoughts are

Bri
User
Posted 30 Jan 2019 at 22:36

Bri


Fingers crossed for next week's appointment, hopefully just a blip. As for the gall stones, avoid M&S cheese and onion quiche and Baileys.


Thanks Chris

User
Posted 05 Feb 2019 at 12:30

Just back from appointment with oncologist well a registrar actually. PSA is now 0.12 which is a bit crap. Registrar said it is a recurrence which surprised me as I thought it had to hit 0.2 or three successive rises to be classed as a recurrence. She said still small numbers. Queried scans as I have had some twinges in the pelvic area and mid back ache but she said at 0.12 it won’t be PCa so would not agree to scans at this point. Hope she’s right on that one.
Interestingly she said they wouldn’t look at treatment until the PSA was above 1 which is a contradiction on what the oncologist told me previously.
So I have another PSA test in three months although they initially said 6 months. Going to think about whether it’s worth paying for some scans if only for peace of mind.
She did try to lighten the situation by saying C’mon you’ve been here before. I reminded her that I hadn’t actually


I am going to insist on seeing an oncologist next time or try to go elsewhere if thats possible 


Bri

Edited by member 05 Feb 2019 at 12:32  | Reason: Not specified

User
Posted 05 Feb 2019 at 13:10
Really sorry to see this Bri - as you know John went up to 0.11 and then back down to <0.1 so we are not engaging with the prospect of treatment until we have to. John has been told he can have an FACBC scan if he gets to 0.2
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Feb 2019 at 13:21
User
Posted 05 Feb 2019 at 13:26

Thanks Lyn, heres hoping i follow Johns lead. Is the FACBC scan done at Leeds and is it as effective as the PMSA scan (or whatever it is). The nurse at PCUK has said that below 0.2 that only had a 25% success rate.


Bri 

User
Posted 05 Feb 2019 at 13:27

Sorry to see this Bri. The evidence is clear that the sooner treatment is initiated i.e. before it rises too much above 0.2 the better the outcome.


I had problems getting my oncologist to realise this and my PSA was 0.7 a month before i started HT with a doubling time of 2.5 months. It did come down to 0.1 very quickly after i started HT.


Second opinion?


 

User
Posted 05 Feb 2019 at 13:48
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

If life gives you lemons , then make lemonade
User
Posted 05 Feb 2019 at 13:57

Thanks Bollinge, that research is basically what the PCUK nurse said. Although that success rate of 50% below 1 was for men >0.5. At my PSA there is only 25% chance or maybe lower.


Thanks Ian, I’m not sure I am at 2nd opinion point yet as I am still below 0.2 so suspect a 2nd opinion would say test again in 3 months?? Don’t forget I have had radical treatment and salvage treatment already so start time of treatment is probably slightly different. Although I would appreciate views on that


Bri

Edited by member 05 Feb 2019 at 13:57  | Reason: Not specified

User
Posted 05 Feb 2019 at 16:59

Sorry Bri, It had slipped my mind you already had SRT. I'll blame cognitive decline due to HT😬


Chris J’s answers seems sensible.


Ian

User
Posted 05 Feb 2019 at 18:10

No probs. Cheers Ian 👍

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

Nine years since DX.


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

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 


 

 
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