PSA of 0.88 6 weeks after RP

User

Posted 21 Sep 2018 at 15:43

Just seeking some advice from people with experience here - following an unexpected diagnosis of advance aggressive (Gleason score 9 (5+4) grade group 5 T3a N0 Mx) prostate cancer after a Bill Turnbull inspired PSA test in April (he had no symptoms) my 63 year old partner had a robotic assisted radical prostatectomy and bilateral extended lymph node dissection just over 6 weeks ago.

Everything appeared to go well, the surgeon managed to spare the nerve on one side, and he has been recovering well apart from a bout of acute pyelonephritis a fortnight ago which landed him back in hospital on an IV drip for a few days. Since then he's been fine, with just the expected post surgery issues.

The post op appointment with the surgeon is scheduled for next Tuesday, so he had a PSA test as instructed this week, and on checking the patient Access site, the results have come back at 0.88

From my understanding this is not ok!

Everything I have read indicates that a post RARP PSA test should be undetectable - 0.01?

0.88 seems to me to be way too high and a really big alarm bell, indicating further investigation and treatment being needed - and soon.

I am really concerned but not able to speak to him about this yet as he is away until Monday with his daughter (I don't want him to be frightened or panicked about this while he's away, and am also not sure if it's something to panic about anyway) and when he told me the results on the phone, he was very happy about them as he was measuring the levels against the PSA results expected for someone of his age (but forgetting that this is relevant for men who still have their prostates, not those without them!).

I spoke to the specialist nurse today who basically said don't worry re the PSA result, anything less than 1 is good and he will be having regular tests anyway, and we're seeing the surgeon next week who will be going through all the pathology results from the operation so bring along any questions. This was very nice of her, but didn't allay my fear at all.

So I guess I'm asking - is this something to be worried about? My instinct is that it definitely is, but I guess like most people without medical expertise I don't want to be making a fuss over nothing when my information has come from a Google search. I don't care what people think of me at the hospital by the way, I just don't want to add unnecessary stress to my lovely man who has borne all of the recent tribulations with huge grace and good humour, so I don't want to create worry for him if it's not something to actually worry about.

If anyone has any advice I'd be very grateful.

User

Posted 21 Sep 2018 at 17:44

Hi White Swan

It is stressful (I can tell you that from experience) but at this stage there is not enough information.

Your partner will need at least one more PSA test to see what is happening as a trend.

Different Trusts and different consultants seem to have different views on what means what and what happens when.

What happens next will depend on that - salvage treatment or hormone therapy.

You could also ring the PCUK nurses for more information prior to your consult.

Try not to worry in the mean time.

User

Posted 21 Sep 2018 at 18:33

Hi Swan,

They say wait for six to eight weeks after an operation for a PSA test, but I had one at four weeks and it was undetectable. Our local mega-hospital only measures to 0.1 and anything under that is classed as ‘undetectable’, both my surgeon and my oncologist said they are quite happy with that and that anything more ‘accurate’ to more decimal points (super-sensitive assay) just causes more worry than it’s worth.

Also, anything under 0.2 is OK after a prostatectomy. What is more important is any increasing PSA and a rise above 0.2. There are fans of decimal points here and no doubt they will comment. No doubt the next PSA test will give you more of a clue what’s happening.

Best of luck with your feller.

Cheers, John.

Edited by member 21 Sep 2018 at 19:00 | Reason: Not specified

User

Posted 21 Sep 2018 at 21:03

My results were very bad after my surgery aged 48. Click my picture and read my profile. But don’t panic yet , you need to hear what they have to say. It’s too long to explain to you so check my notes out

User

Posted 21 Sep 2018 at 21:08

Originally Posted by: Online Community Member

0.88 seems to me to be way too high and a really big alarm bell, indicating further investigation and treatment being needed - and soon.

Your instinct is correct. That is not what you wanted to here or expected. After a Radical Prostectomy (assuming the full prostate has been removed and not resected, the PSA drops by 50% every 2 to 3.2 days (so you should be zero) at 6w zero is defined as <0.02 (less than 0.02). A result of 0.88 suggests either spread/metastices maybe both from the Prostate. They should be thinking of radio therapy (RT) or hormones (HT) if they want to quickly proceed to RT after healing). The nurse is fobbing you off. It would be better for you to ask for a meeting with the oncologist/surgeon to review the post operative pathology report as soon as possible, it might be better if you allowed them to manage your partners expectations and if you are unhappy interject some important questions. Please get copies of the path report. You need to also request a battery of scans. Bone/Pet/mpMRI if they have not been done. With regards to your partner it’s probably better to let him enjoy some stress free days. He’s probably sleeping better than he has for some time

Fresh

Edited by member 21 Sep 2018 at 21:16 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 21 Sep 2018 at 21:39

There are a number of things that can affect PSA so see what oncologist has to say next week. He/she may suggest a further PSA test quite soon.

Was it explained before the op that with an aggressive Gleason and a T3A staging there was a significant chance that surgery might need to be supplemented by another treatment such as radiotherapy, although I am not suggesting it is needed? That is something that your partner's consultant may wish to discuss with him at some point so one should be prepared for this possibility. Hopefully, further treatment will not be needed.

Barry

User

Posted 21 Sep 2018 at 23:52

Fresh is spot on, 0.88 is not good BUT you need to validate the reading as it would not be the first time they have messed up a decimal place.

User

Posted 22 Sep 2018 at 13:42

White Swan, anything over 0.1 is concerning at this stage. The appointment will be a good opportunity to confirm that it was indeed 0.88 rather than 0.088 - if so you should expect the surgeon to refer your partner to ontology for a chat. If that isn't suggested I think I would gently insist.

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

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User

Posted 21 Sep 2018 at 17:44

Hi White Swan

It is stressful (I can tell you that from experience) but at this stage there is not enough information.

Your partner will need at least one more PSA test to see what is happening as a trend.

Different Trusts and different consultants seem to have different views on what means what and what happens when.

What happens next will depend on that - salvage treatment or hormone therapy.

You could also ring the PCUK nurses for more information prior to your consult.

Try not to worry in the mean time.

User

Posted 21 Sep 2018 at 18:33

Hi Swan,

Best of luck with your feller.

Cheers, John.

Edited by member 21 Sep 2018 at 19:00 | Reason: Not specified

User

Posted 21 Sep 2018 at 21:03

User

Posted 21 Sep 2018 at 21:08

Originally Posted by: Online Community Member

0.88 seems to me to be way too high and a really big alarm bell, indicating further investigation and treatment being needed - and soon.

Fresh

Edited by member 21 Sep 2018 at 21:16 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 21 Sep 2018 at 21:39

There are a number of things that can affect PSA so see what oncologist has to say next week. He/she may suggest a further PSA test quite soon.

Barry

User

Posted 21 Sep 2018 at 23:52

Fresh is spot on, 0.88 is not good BUT you need to validate the reading as it would not be the first time they have messed up a decimal place.

User

Posted 21 Sep 2018 at 23:55

Hi, I wouldn't jump to a conclusion. We don't know what his original psa was and we all react a bit differently. There are lots of subtle differences in everyone's diagnosis.

I haven't heard of Patient Access sites before, I wish we had one although getting results blind can be worrying. I was once told not to get ahead of myself worrying about possibilities during diagnosis.

Good luck with your surgeon appointment.

Regards
Peter

User

Posted 21 Sep 2018 at 23:59

Thanks Peter - and everyone else who’s taken the time to reply. His original PSA was 7.4.

User

Posted 22 Sep 2018 at 01:48

Originally Posted by: Online Community Member

I haven't heard of Patient Access sites before, I wish we had one although getting results blind can be worrying.

Regards
Peter

Here is a link to your GP medical records. Your GP surgery needs to give you the access codes. There are also apps for phones and tablets.

Your hospital records are available on request from the Patient Access to Records department at the hospital.

https://www.patientaccess.com/

Cheers, John.

User

Posted 22 Sep 2018 at 13:27

Originally Posted by: Online Community Member

Hi, I wouldn't jump to a conclusion. We don't know what his original psa was and we all react a bit differently. There are lots of subtle differences in everyone's diagnosis.

Good luck with your surgeon appointment.

Regards
Peter

Everyone has access to this Peter- I think it became mandatory for doctors to offer it after a legal case. You may have had a letter or leaflet from your GP practice 2 or 3 years ago and binned it or didn't feel it necessary at the time. I signed up as soon as it became available but John swears he never got the leaflet.

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

User

Posted 22 Sep 2018 at 13:38

What if White Swan's partner complained that his right to privacy had been breached under the new DP legislation - the nurse could be dismissed and her employer fined hundreds of thousands of pounds.

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

User

Posted 22 Sep 2018 at 13:42

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

User

Posted 22 Sep 2018 at 14:24

Originally Posted by: Online Community Member

That's a bit harsh Fresh. Not sure the nurse is fobbing anyone off but there is a difficult line for her to tread - discussing someone's test results with a family member before they are discussed with the actual patient would be very poor practice especially knowing that there is an appointment with the consultant in a few days.

What if White Swan's partner complained that his right to privacy had been breached under the new DP legislation - the nurse could be dismissed and her employer fined hundreds of thousands of pounds.

Lol. Then I suggest white swan approaches the nurse at the next available opportunity and asks her to clarify if ‘hypothetically’ a patient - not my OH by the way. Happens to have a RALP and retuned at 6w with a 0.88 PSA reading do you think ‘hypothetically’ that this is an indication of residual PCa. If she replys no then report her, because she’s a danger to patients and needs training. You just never know, it’s idiots like that that sometimes get to press buttons on syringe drivers, you might be saving a life.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

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