PSA 4.8 after radical prostatectomy

FormerMember
FormerMember
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Hi

My dad had a radical prostatectomy about 12 years ago. He takes hormone therapy and has blood tests every 6 months. Recently he has had blood in his urine and his PSA has shot up from 0.7 to 4.8. He is due to have another blood test in September. He has been referred back to Oncology and yesterday had a ‘tv camera put up his willy’ his words! It showed nothing in his bladder so he has to have an mri scan to check his kidneys/liver. He has smoked all his life and has an awful cough that almost chokes him which he has had for a couple of years now. This worries me in case it’s in his lungs.

we have to wait two weeks for results but does this mean the cancer is back? The doctor gave him ten years to live 12/13 years ago. I lost my mum unexpectedly to cancer 4 years ago so I want to be more prepared if something bad is coming. 

any Advice would be welcome. I’m not a worrier by nature but this is consuming me. Xx

  • FormerMember
    FormerMember

    Hello Rachael

    and welcome to the prostate group.  I understand you'd rather not be here, but I think you will find it to be of some help.

    I will try to give you some possible answers.

    The situation you describe with your father sounds a  little unusual.  Do  you live in the UK?

    You say he had a prostatectomy some years ago and wonder if you know what the results of his pre-operative investigations were and what did the post-operative report say.  If he or you don’t know you might wish to find out.

    It is a while ago but before surgery it is now usual to have an MRI, a biopsy, a bone scan and a CT scan.  7 years ago I did not have the CT scan, but had all the others.

    The biopsy confirms that there is a cancer and gives a score, (Gleason score) which indicates how aggressive the cancer is on a scale of 1 to 10.  A score of 8 or above is considered aggressive.

    The pre-operative scans help to see where the primary tumour in the prostate is and might be able to see if it has grown through the prostate capsule.  They also show if the cancer has spread to other parts of the body, typically local lymph nodes, bones and possibly the liver. 

    If the cancer has spread outside the gland itself radiation treatment (RT) might have been suggested as an alternative to surgery.  If the local lymph nodes had been involved this would have been even more likely.  If RT had been given, short term hormone therapy (HT) might have also been given.

    If the cancer had spread to other parts e.g. bone, surgery would NOT have been offered.  Hopefully, this was the case and your father’s cancer had not spread.

    It is a bit odd however therefore, that he was given HT and has been taking it all this time?

    Post-operatively, your dad should have had a PSA test at least at 3 months and 6 months.  These would have shown the possibility of all the cancer cells being removed.  The PSA at 6 months should have been undetectable or zero.  If it wasn’t,  then possibly not all the cancer cells had been removed.

    Additionally, the removed tissue is examined in a lab.  The surgeon may have removed the gland, seminal vesicles and possibly some lymph nodes.  If so they would all be examined.

    The report on the gland itself would say if any  cells appeared to have crossed the edges of the gland or not.  This is referred to as “positive” or “negative margins”.  The Gleason score will be updated.  If margins are positive then the likelihood is that cancer cells have been left behind.

    Reports on the nodes and seminal vesicles IF removed will say if there were cancer cells found in these..

    A PSA of 0.2 ng/mL or more  is considered as a “Biochemical Recurrence”.  Over 4.0 ng/mL is higher than is normal for a man who hasn’t had surgery.

    As someone who is not a urology specialist I cannot comment on a PSA of 0.7 or 4.8.

    An MRI scan will detect if there is an abnormality in the liver and I suspect that the scan may include the pelvic area itself.  Did they also mention a bone scan or a CT scan?

    These scans together may help determine where the PSA is coming from.

    I believe it is unusual, but not impossible,  for prostate cancer to affect the lungs.  If he’s having a CT scan this will help identify the possible cause of his chronic cough.  Perhaps he needs a chest X ray.

    You might find this booklet helpful.  Some of it is only relevant to the diagnosis of prostate cancer, but the sections on the scans are still relevant.

     https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/142/0777.Having_2D00_tests_2D00_for_2D00_prostate_2D00_cancer.pdf

    Again as I am not a qualified urologist I cannot interpret what was found on the bladder investigation (cystoscopy)  I have had three cystoscopies myself.  My urologist was able to see any abnormality in both the bladder AND the urethra.  So it might be useful to ask if any abnormality was seen at all, in your dad’s cystoscopy, i.e. in the urethra, not just the bladder.

    As for blood in the urine, I did have blood in mine for many years.  What this means partly depends on the amount and quality of the blood.    In my case it could only be detected in small amounts by a test. It wasn’t visible.  Thus was due to chronic prostatitis,  i.e.  inflammation.   If there is enough blood, then sometimes it will make the urine cloudy not red, which means something has changed the red cells.  This is something I have observed personally.  If it’s visibly red, as it was for me for some time after my prostatectomy, it is unchanged and most likely comes from “lower” down the urinary system.  i.e. urethra or bladder.

    The blood could be due to an infection in any part of the urinary system which also includes  the ureters and the kidneys.  Or it could be due to problems in these “higher” parts of the system.  So it may be that your dads’ doctors will consider this rather than it being a cancer recurrence.

    It may be that the current health professionals looking after your dad know little of his history, but his case notes from 12/13 years ago should still exist.  If in the UK, your dad has the right to see his case notes under Data protection laws and he may wish to do so.  In which case there is a formal process for requesting this, a doctor can’t just show him.  I requested to see mine a couple of years ago and there was no problem, they were very cooperative and although they could have charged a fee, they didn’t.  I may be wrong but I recall they wouldn’t let me photo anything, but would have photocopied if I wanted anything.

    There are a couple of risks with this.  One is, he may find out something he doesn’t really want to know and two, he might not understand or misunderstand  something.  I recall I had to sign a form indemnifying the organisation from any harm arising out of me seeing my notes.

    I was lucky because I didn’t find anything that shocked me and, with my background, I didn’t see anything I didn’t understand.  If I had, there would have been someone I could ask for an explanation.

    I hope this covers most of your queries.  I’m sorry if it appears a bit bleak but I do feel it’s not helpful to give unrealistic reassurances.

    It does appear that depending on scan results that your Dad’s treatment may be changed or made more aggressive.  There are options and the aim would be to bring the PSA down again.  There are many people these days who are "living with cancer" they have it but. they are getting on with a reasonable quality of life.

    Please keep us informed.

  • Hi Rachel, sorry to hear about your dad.

    How long has your dad been on hormone therapy ? what have previous psa results been before the .7, no need to go back 12 years but has it shown a steady increase over the past few years?

    Do u know if the psa was ever undetectable after surgery? Sorry to ask so many questions but the more info u can give hopefully the more accurate the replies.

    best regards

    Steve

  • FormerMember
    FormerMember in reply to Grundo

    Hi

    Tha I you both for your replies. I’ll try and give abit more information. My knowledge is limited as I only know what he tells me. When my dad had surgery I was living away from home. All I know is that it was very bad the surgeon said if he had left it 6 more months he would be dead and as soon as his prostate was in a bucket on the surgeons floor the better! Afterwards he had radiotherapy but never achieved a 0 or .1 PSA reading it was about .4 and has stayed steady for the intervening years, until the last six months. He as been on hormone therapy for a long time, he has large boobs as a by produce which he struggles with. I don’t know his Gleason score or anything like that. He was operated on in Yorkshire and in the interim he moved to Wiltshire so is seeing a different doctor etc but he told me they know all about him and have his notes so I guess we just have to put our faith in them. 

    He did have a cancerous mole removed from his head 6 months ago but I’m guessing this is unrelated. 

    Is it more likely that it’s gone to his kidney/liver. There was absolutely nothing in his bladder but he can see the blood in his urine. Typically when he had to supply a wee sample for the docs there was none in it.

  • FormerMember
    FormerMember in reply to Grundo

    Hi

    Tha I you both for your replies. I’ll try and give abit more information. My knowledge is limited as I only know what he tells me. When my dad had surgery I was living away from home. All I know is that it was very bad the surgeon said if he had left it 6 more months he would be dead and as soon as his prostate was in a bucket on the surgeons floor the better! Afterwards he had radiotherapy but never achieved a 0 or .1 PSA reading it was about .4 and has stayed steady for the intervening years, until the last six months. He as been on hormone therapy for a long time, he has large boobs as a by produce which he struggles with. I don’t know his Gleason score or anything like that. He was operated on in Yorkshire and in the interim he moved to Wiltshire so is seeing a different doctor etc but he told me they know all about him and have his notes so I guess we just have to put our faith in them. 

    He did have a cancerous mole removed from his head 6 months ago but I’m guessing this is unrelated. 

    Is it more likely that it’s gone to his kidney/liver. There was absolutely nothing in his bladder but he can see the blood in his urine. Typically when he had to supply a wee sample for the docs there was none in it.

  • Rachel

    It's quite likely that they never totally eradicated all of the cancer cells but the psa has been kept down by the hormone therapy.

    HT usually will stop working eventually but he has done well for it to last all these years.

    Difficult to speculate what is causing blood in the urine, looks like the bladder is clear, wait and see what the scan says about the kidneys.

    Sometimes changing the medication (HT) can work so it would be worth discussing this with the specialist.

    I don't know much about the different hormone therapies, perhaps someone will post who has been through a similar situation.

    Regards

    Steve

  • FormerMember
    FormerMember in reply to FormerMember

    Rachael

    In view of this it might be best to draw a line under his surgery and focus on now.  Although I’m glad your dad did have some radiotherapy and the hormone therapy has kept him going a good time.

    A change in hormone therapy and some drugs developed in the past 12 years might help bring the PSA down.

    Prostate cancer typically spreads to bones first and may spread to the liver later. You will know more about that after the scan.

    It might still be worthwhile checking that the cystoscopy showed no problem with the urethra as well as the bladder.  Red blood in the urine sounds like an infection, but that would show up in a urine test.  Again the MRI scan may reveal more about that too.

    This is a worrying time I realise, I think your dad has done very well so far.  If you have any more queries or more news, please come back to us.

    Macmillan can help in many ways.