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PSA has risen after treatment - very worried

User
Posted 15 December 2017 16:44:37(UTC)
Hello can anybody offer me some advice and reassurance. Dad was diagnosed in February 2017 Gleason 9, T3b N0M0. He’s on hormone therapy and has had radiotherapy which finished in July. His PSA in Feb was 19, in July it was 1.6 and today it is 8. I feel extremely anxious and so do my parents. We really were not expecting this at all. The consultant had even signed Dad off, saying the radiotherapy has gone really well. He’s seeing Urology again next Friday. Can anyone help me understand what this ‘might’ mean? Thank you.
User
Posted 21 December 2017 22:25:07(UTC)

PenP, please note that Safinamo has only joined today and hasn't given any indication that s/he is qualified to post such poor and upsetting advice. I have reported it to the moderators.

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


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User
Posted 22 December 2017 02:45:23(UTC)

he/she hasn't given any details about why he/she is here, in fact no profle which is unusual and causes motives to be suspect.

Barry
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User
Posted 22 December 2017 21:28:50(UTC)

Two year old paper - things have moved on a lot since then! Plus the Americans do things a little differently to the UK sometimes

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


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User
Posted 15 December 2017 23:41:27(UTC)

My first thought would be to get a urinary infection ruled out as this might, I emphasise might be the reason, assuming this has not already been done. It is possible if an infection has been ruled out that another PSA test will be done. If all other possibilites have been excluded, it could be that there is still some cancer in his prostate or elsewhere that is thriving despite the RT/HT. There are further forms of treatment that can be tried and I would have thought that the opinion of an oncologist would be considered. There are still a number of 'tools in the box'.

Barry
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User
Posted 16 December 2017 01:51:03(UTC)

I think I would want a testosterone test to see whether a) the HT is working but the cancer has already learned how to survive without testosterone or b) the ht isn't working.

Was he diagnosed with adenocarcinoma or another type of prostate cancer?

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


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User
Posted 16 December 2017 07:47:17(UTC)
Thank you both for your replies. Do you have any idea what might happen next? If the HT isn’t working I believe they may add something to it to keep up the suppression?
User
Posted 16 December 2017 08:03:35(UTC)
I did manage to speak to a lovely nurse yesterday and she said if a urine infection is ruled out then Casodex could be introduced as an additional suppressant to the HT? On my goodness I am so worried. Surely going 1.6 to 8 in three months is not good?
User
Posted 16 December 2017 08:15:56(UTC)
If you look at my bio you will note that I had a similer PSA rise after Radiotherapy

Unfortunately the blighters decided to spread out in my case and what followed was Chemotherapy.

Now i am not saying this is the case with your father but a scan picked this all up in my case.

As Barry said there are plenty more tools in the box

My very best wishes to you and your father

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 16 December 2017 08:21:50(UTC)
Hi Lyn thank you as always for replying so quickly and offering advice and support. I’m not sure what type it is I’ll have to as him later x
User
Posted 16 December 2017 16:49:44(UTC)
Lyn it was adenocarcinoma PC. Does this make a difference?
User
Posted 16 December 2017 18:06:14(UTC)

Only in that there are a couple of rarer prostate cancers that do not respond to HT so knowing it is adenocarcinoma is a good thing.

There is a small possibility that the recent rise is down to a rogue injection ... depending on which hormone he is on, sometimes GP practice nurses don't know how to inject it properly, or it could have been stored incorrectly and there have been occasional reports on here of a bad batch. It has also been known for a 1 month dose to be given when it should have been a 3 month dose. Amazing how quickly the PSA can rise in these situations and then fall back down as soon as the next injection is given.

Ask for the testosterone level to be tested - it should be 0.69 or less. If his T is higher than that, then either the HT isn't working efficiently (in which case they may add bicalutimide) or the last injection was faulty in some way. If his T is 0.69 or lower that indicates that the cancer has become hormone refractory (in other words, it has learned how to survive without testosterone) and a new treatment will be needed.

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


User
Posted 16 December 2017 19:44:53(UTC)
Thank you so much Lyn I really appreciate your response and helpful information. Oddly Dad didn’t get the usual rash on his face with the last injection so I did wonder if it was a rogue one as you say. I’m not very good waiting for appointments or for information - am very impatient! Dad has agreed to let me attend his appointment on Friday at Urology which I’m really pleased about and he’s delighted that I’m on this forum and getting some advice (which I’m relaying back to him). It’s been a challenging day worrying about why this jump has occurred so I am grateful to have contact on here xxx
User
Posted 16 December 2017 19:48:54(UTC)

On Friday, make sure you get a referral back to oncology

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


User
Posted 21 December 2017 21:16:41(UTC)

Control the psa in 2 weeks again.
If it is still 8 or higher and your dad is under hormone treatment and has no urinary infection, you should not wait too long.
GS 9 and pT3b mean that he has a very high risk to develop metastases (usually in the bones and lymph nodes).
Go for a Choline PET-CT.
If the urologist refuses, at least a bone scan and CT of thorax, abdomen and pelvis to exclude metastases.

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User
Posted 21 December 2017 22:25:07(UTC)

PenP, please note that Safinamo has only joined today and hasn't given any indication that s/he is qualified to post such poor and upsetting advice. I have reported it to the moderators.

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


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User
Posted 22 December 2017 02:45:23(UTC)

he/she hasn't given any details about why he/she is here, in fact no profle which is unusual and causes motives to be suspect.

Barry
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User
Posted 22 December 2017 17:37:46(UTC)

Thank you Lyn and Barry I’ve only just seen the message and it was quite a shock. I don’t know what to say. Dad saw the urologist today (great guy, very helpful and reassuring) and put Dad on the Casodex straight away which I was pleased about. We also got bloods done including PSA and testosterone (thank you Lyn for recommending we get the testosterone added) and we put the paperwork in for a CT scan. Although CT scan marked urgent it might still be 2-3 weeks which Dad is worrying about. So I feel pleased that we are being looked after again but obviously disappointed for him. I am trying to keep positive. The lovely urologist did say if Dad has become hormone resistant then they can try other things and to keep in mind some men can live with this even if it’s not cured. It’s been a difficult week but knowing Dad is being looked after again is good. Thank you both xxx

User
Posted 22 December 2017 21:18:29(UTC)

http://www.jnccn.org/content/suppl/2016/01/04/14.1.19.DC1/0019.pdf

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User
Posted 22 December 2017 21:28:50(UTC)

Two year old paper - things have moved on a lot since then! Plus the Americans do things a little differently to the UK sometimes

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


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User
Posted 23 December 2017 01:49:38(UTC)

In the UK those responsible for diagnosis and treatment of Prostate Cancer largely follow the recommendations and guidance of NICE (National Institute for Health and Care Excellence). This is currently based on the 2014 link here - quite wordy and detailed if you follow it through completely but is due to be updated in January 2019. Go to Guideance on https://www.nice.org.uk/guidance/cg175
Meanwhile, further updates and clarification on some aspects can be obtained by reference to the NICE website as refinements become available as appropriate. There can be more variance to established guide lines where authorized trials are concerned.

Barry
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