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Husband being pressurised by medics

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User
Posted 16 Feb 2022 at 07:38

My husband is 80.  He has been monitored 3 monthly and PSA risen to 12 (6 -20 months ago). He has had an enlarged prostate for many years. GP referred - hospital  where Dr pressurised for MRI and biopsy which he says he won't have. He has had a lot of medical interventions these last 3 years serious head injury and facial reconstruction 3 years ago, closely followed by tonsil cancer (in remission) he is also awaiting surgery for worsening glaucoma.  Despite telling medics he does not wish any tests or treatment if prostate cancer was found, they are now suggesting a bone scan and if any cancer, female hormones.  He has absolutely no symptoms and is feeling better now than he has for ages.  We were planning on resuming our travels now Covid isnt such a problem.   He says he has had enough of doctors and hospitals and just wants to be left alone. He has reluctantly agreed for appointment and PSA in 3 months just to get them off his back and still says he wouldn't have any tests or treatment.  I fully support whatever he decides, but its  so stressful. Help!

Edited by member 16 Feb 2022 at 22:57  | Reason: Not specified

User
Posted 17 Feb 2022 at 12:28
He is 80 FFS and has clearly made an informed decision. If he is symptom free I can understand his position.

User
Posted 17 Feb 2022 at 22:44
Also (and very practical) ... if he has the tests and is diagnosed with prostate cancer, it will be so much harder to get the travel insurance you need to be able to live your best lives. As long as he isn't diagnosed, it will be cheaper although you will have to disclose that he was referred for high PSA.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2022 at 12:37

Hi,


I note what you say about problems your husband has had to deal with hitherto. This seems to have played a part in the way he feels about the possibility about tests and possible treatment for PCa. He should not be pressurised into having either but it may be that what to him may feel like being pressurised, would just be strong advise to another man who has not had the medical history he has. My feeling is that it makes sense to know where you stand with regard to PCa in so far as this is possible. The fact that he feels well now may disguise where he is really, which will require tests and a scan to ascertain. Death from PCa, should it come to that, can be a rotten way to go, particularly towards the end. So if PCa is the cause of his PSA, the chances of avoiding death from PCa or deferring it are improved the earlier found and treated.


I would suggest he has the tests/scan unless he is so determined to avoid treatment regardless of what is found, in which case he can avoid these and the cost and clinician time in doing them. It is not clear whether he has had an MRI scan as I would expected this before having a bone scan.


It might be helpful for him to download or order a free copy of the 'TOOL KIT' which provides a lot of information about the disease and it's treatment. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


NB  Just read why he can't have MRI


 


 

Edited by member 17 Feb 2022 at 12:42  | Reason: To highlight link

Barry
User
Posted 17 Feb 2022 at 22:13
My father-in-law was 79 at diagnosis - he did have the biopsy and scans but then decided not to have treatment. He only lived another 4 years before the prostate cancer killed him but it was a really happy 4 years - a few weeks before he died, he bought a new tent and went camping to France for a month.

Of course we were sad to lose him as he was loved very much but we had to respect his right to decide and it was absolutely the right decision for him. He bitterly regretted having his PSA test - he said it would have been better not to know.

In your husband's shoes, I would write to the GP and the urologist stating that I am not agreeing any diagnostic tests as, even if diagnosed, I would decline treatment but that I would like to continue having my PSA monitored in case the situation changes significantly in the future. I would also put in the letter that I have felt the medical staff are not respecting my wishes and I would like not to have any further pressure from them.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 17 Feb 2022 at 11:27

Hi 


Your Husband has been through a lot in the last few years and it is very understandable that he has had enough with hospitals but if you can convince him to have the MRI and biopsy it will help your peace of mind and if like me the numbers are good early treatment as i had was so easy with more choice of treatments.


I had Brachytherpy in September 2016  at 70 with PSA 2.19  Gleason 3+4=7 and 5 cores out of 20 positive.


I was only in hospital for two days and had no side affects apart from ED for the last 6 years and was signed off in


2021.If you click on my Avatar you can see my journey and i am happy to answer any questions you may have.


Regards John

User
Posted 17 Feb 2022 at 11:57

Thank you for your response. He can't have MRI as he has extensive metalwork in his body and flatly refuses a biopsy  saying he won't have any treatment. We have made a private appointment, so that he can discuss his personal circumstances.  Also refuses bone scan - same reasoning - will not have treatment in any case.  He says he prefers quality of life ( he has no symptoms and is well) for a shorter time, rather than feeling rubbish for a little extra time.  At 80 I can see his point. Such a stressful time - I sort of wish they hadn't been monitoring his PSA.  

User
Posted 17 Feb 2022 at 12:28
He is 80 FFS and has clearly made an informed decision. If he is symptom free I can understand his position.

User
Posted 17 Feb 2022 at 12:37

Hi,


I note what you say about problems your husband has had to deal with hitherto. This seems to have played a part in the way he feels about the possibility about tests and possible treatment for PCa. He should not be pressurised into having either but it may be that what to him may feel like being pressurised, would just be strong advise to another man who has not had the medical history he has. My feeling is that it makes sense to know where you stand with regard to PCa in so far as this is possible. The fact that he feels well now may disguise where he is really, which will require tests and a scan to ascertain. Death from PCa, should it come to that, can be a rotten way to go, particularly towards the end. So if PCa is the cause of his PSA, the chances of avoiding death from PCa or deferring it are improved the earlier found and treated.


I would suggest he has the tests/scan unless he is so determined to avoid treatment regardless of what is found, in which case he can avoid these and the cost and clinician time in doing them. It is not clear whether he has had an MRI scan as I would expected this before having a bone scan.


It might be helpful for him to download or order a free copy of the 'TOOL KIT' which provides a lot of information about the disease and it's treatment. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


NB  Just read why he can't have MRI


 


 

Edited by member 17 Feb 2022 at 12:42  | Reason: To highlight link

Barry
User
Posted 17 Feb 2022 at 14:55

I agree with francij1.  He is very well informed and resolute.  His injuries from RTA were horrendous - 3 months in hospital, 3 brain haemorrhages, 12 hour facial reconstruction  and long rehab- the tonsil cancer came 4 months later!  For this he had very gruelling radiotherapy to throat making it difficult to eat or drink for months afterwards and leaving him with no sense of taste or smell and now we have glaucoma surgery looming!    Despite all this he is now fit - walks 5 miles a day and has no urinary symptoms whatsoever.  DRE was reported as no nodules but firm on one side and together with PSA 12 makes me think likely prostate ca, but we understand most men of 80 would have it and not know. Medics just don't seem to grasp his decision and totally disregard his medical history.  I posted as I thought maybe someone had made a similar decision at this age?  He is still on 3 monthly reviews for tonsil cancer -in itself stressful  I think bone scan without even being diagnosed is jumping the gun, but he would rather not know anything and get on with life. 

Edited by member 18 Feb 2022 at 13:37  | Reason: Not specified

User
Posted 17 Feb 2022 at 22:13
My father-in-law was 79 at diagnosis - he did have the biopsy and scans but then decided not to have treatment. He only lived another 4 years before the prostate cancer killed him but it was a really happy 4 years - a few weeks before he died, he bought a new tent and went camping to France for a month.

Of course we were sad to lose him as he was loved very much but we had to respect his right to decide and it was absolutely the right decision for him. He bitterly regretted having his PSA test - he said it would have been better not to know.

In your husband's shoes, I would write to the GP and the urologist stating that I am not agreeing any diagnostic tests as, even if diagnosed, I would decline treatment but that I would like to continue having my PSA monitored in case the situation changes significantly in the future. I would also put in the letter that I have felt the medical staff are not respecting my wishes and I would like not to have any further pressure from them.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2022 at 22:34

Thank you - at last someone who understands!   We are both so stressed by all this and just want to enjoy life for however long it may be.  

User
Posted 17 Feb 2022 at 22:44
Also (and very practical) ... if he has the tests and is diagnosed with prostate cancer, it will be so much harder to get the travel insurance you need to be able to live your best lives. As long as he isn't diagnosed, it will be cheaper although you will have to disclose that he was referred for high PSA.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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