I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

New to the process

Email this conversation Print this conversation
User
Posted 03 Aug 2019 at 06:07

My elderly father, 87yrs, was diagnosed with PC last year with a psa level of 22. Not an unexpected level I believe for his age. We were advised to 'watch and wait'. 


He has become far more tired, complained of a back ache and is visiting the bathroom more frequently and for longer periods of time. He is a private person and does not disclose that he has 'any problem!'


He recently had some blood tests and his psa came back at 193psa. He is now being referred back to his consultant urologist for further investigation. 


My question is whether this increase is to be expected or is this more of a worry? What treatments, if any, are they likely to offer? What are peoples thoughts on this? What questions do we need to ask at the consultants appt?


 


Thanks in advance,


Jennie

User
Posted 03 Aug 2019 at 11:49

Jennie,


Do you know if he had an MRI scan and a biopsy when he was diagnosed, and if so, what the staging (TxNxMx) and Gleason score were?


Also, a difficult question, but based on his health excluding the prostate cancer, would you expect him to live a long time, or does he have other significant life limiting co-morbidities? For example, if they thought he might die from the prostate cancer in 10 years, but he's likely to die of something else before then, it might be better for his quality of life not to add side effects of prostate cancer treatment from which he isn't going to benefit.


A PSA of 193 is very significant, but it might not all be caused by prostate cancer. At that age, urinary infections are not uncommon, so it needs investigating. Back ache can be prostate cancer, but most back ache isn't. Slow urinary stream can be prostate cancer, but it's much more commonly caused by Benign Prostate Hyperplasia which is not life threatening, and can be treated by drugs such as tamsulosin, hormone therapy, or surgery.


We can't say if that rise in PSA is expected, without knowing in more detail what his diagnosis was and what the consultants decided to do, and why. However, it's right for him to be referred back so they can review their decision, and if necessary update it and maybe offer some treatments.


Ask for his diagnosis (staging, Gleason, location).
Ask if they are looking at curative treatments, or if they don't think he is going to die from prostate cancer even if left untreated. (Consider if you want your father present when you ask such questions, although your father will need to consent to you talking with the consultant by yourself.)
Also ask if there's a Macmillan nurse you can talk with - they can spend longer with you, and often better explain the medical terms and treatment pathways, and you can more easily get to see them when more questions spring to mind.

User
Posted 03 Aug 2019 at 06:07

My elderly father, 87yrs, was diagnosed with PC last year with a psa level of 22. Not an unexpected level I believe for his age. We were advised to 'watch and wait'. 


He has become far more tired, complained of a back ache and is visiting the bathroom more frequently and for longer periods of time. He is a private person and does not disclose that he has 'any problem!'


He recently had some blood tests and his psa came back at 193psa. He is now being referred back to his consultant urologist for further investigation. 


My question is whether this increase is to be expected or is this more of a worry? What treatments, if any, are they likely to offer? What are peoples thoughts on this? What questions do we need to ask at the consultants appt?


 


Thanks in advance,


Jennie

User
Posted 03 Aug 2019 at 22:30
First up I don't think 22 is an acceptable PSA for any age, 193 definitely isn't.

If he is suffering early stage dementia you need to be very concerned about significant cancer treatments "pushing him over the edge" into full blown dementia.

So what would I do if it was my dad? First up you need some clarity from his medical team about whether any (or all) of his symptoms are PC related, you then need to asses the benefit versus QoL of any treatments (or non).

User
Posted 03 Aug 2019 at 22:48
It seems his cancer is now very active. It would be pure guesswork on the part of the doctors to try to say where the cancer is, without doing scans (including a bone scan). You need to be aware that:
- with a PSA of 190 there is a high risk that the cancer has spread
- if the tumour in his prostate is growing rapidly, it can prevent him from emptying his bladder properly
- not emptying his bladder increases the risk of UTI ... one side effect of a UTI being symptoms of confusion
- active cancer in bones can lead to too much calcium in the blood which has symptoms very similar to dementia

It may not be appropriate for dad to have surgery or radiotherapy but I suspect the specialist will say that he really, really needs hormones now to stop him from producing testosterone. It will have side effects which may include muscle weakness, fatigue and memory problems but should also improve things like urinary frequency. To be frank, the side effects of unchecked cancer are far worse than the possible effects of the meds.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2019 at 17:00

hi Jenny,


What was he latest PSA result then?  All the very best, there's a wealth of experience on forum. It's so difficult to get the full picture of someone's health and wellbeing ?  87 is his chronological age , I get the impression his biological age is far far less until recently ?


firstly have you POA . power of attorney health ?


Does dad live quite happily in a house, with stairs and with a large garden ?


has his dementia been diagnosed ? ie many types.


Has he ever had MRI or any biospies?


I agree with Lyn etc.  to paraphrase . What are your dads true wishes?   Who does he confide in ?


He needs to be comfortable at night and any bladder issues sorted at a minimum.  There can be a dominoe effect.  ie tired. getting up at night.  falling etc.


Again memory issues. Who is dealing with meds ? Who is validating what he's saying.


There are some numerous volunteer groups I'm sure who can support and advise.


I hope this helps.  He may not want to cause a fuss.. 


regards Gordon 


 


 


 

User
Posted 05 Aug 2019 at 18:01
It has risen from 22 to 193, Gordon - a doubling time of 3.8 months :-/

Jenny, one of the things to clarify when you see the specialist is whether it is up to your dad to arrange PSA tests. Men on active surveillance would usually have 3 monthly PSA (often done at the GP practice) with an annual appointment with the urologist or oncologist for DRE and a scan.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Sep 2019 at 00:39
Starting HT tablets is in fact starting treatment and it is very likely that this will lower Dad's PSA very considerably, and restrain the disease, at lest for a (undefinable) time. Unfortunately, this is likely to make dad more tired and possibly have some other side effects, although these may reduce after a time as his body becomes accustomed to tht HT. It seems more likely that any RT given in due course may be directed at mets if found from bone scan rather than a full course directed to the prostate location.Whilst this may help alleviate any pain caused by mets, RT may itself introduce some added side effects.
Barry
Show Most Thanked Posts
User
Posted 03 Aug 2019 at 11:49

Jennie,


Do you know if he had an MRI scan and a biopsy when he was diagnosed, and if so, what the staging (TxNxMx) and Gleason score were?


Also, a difficult question, but based on his health excluding the prostate cancer, would you expect him to live a long time, or does he have other significant life limiting co-morbidities? For example, if they thought he might die from the prostate cancer in 10 years, but he's likely to die of something else before then, it might be better for his quality of life not to add side effects of prostate cancer treatment from which he isn't going to benefit.


A PSA of 193 is very significant, but it might not all be caused by prostate cancer. At that age, urinary infections are not uncommon, so it needs investigating. Back ache can be prostate cancer, but most back ache isn't. Slow urinary stream can be prostate cancer, but it's much more commonly caused by Benign Prostate Hyperplasia which is not life threatening, and can be treated by drugs such as tamsulosin, hormone therapy, or surgery.


We can't say if that rise in PSA is expected, without knowing in more detail what his diagnosis was and what the consultants decided to do, and why. However, it's right for him to be referred back so they can review their decision, and if necessary update it and maybe offer some treatments.


Ask for his diagnosis (staging, Gleason, location).
Ask if they are looking at curative treatments, or if they don't think he is going to die from prostate cancer even if left untreated. (Consider if you want your father present when you ask such questions, although your father will need to consent to you talking with the consultant by yourself.)
Also ask if there's a Macmillan nurse you can talk with - they can spend longer with you, and often better explain the medical terms and treatment pathways, and you can more easily get to see them when more questions spring to mind.

User
Posted 03 Aug 2019 at 14:26

Thank you so much. 


My father has been generally well although does have early stage dementia. 


When speaking with his GP the tone was suggesting that quality of life vs treatment needs to be considered. Not really knowing what the side effects of treatments are and whether these are significant. He’s a strong willed old chap and we don’t want him so impacted by treatment that it curtails his ability to potter around the garden (large😀) enjoying life. He is already becoming more frail and more tired. He’s regularly having 10 min power naps as he walks around the garden, interspersed by frequent visits to the bathroom after a cup of tea! 


We have no idea of the medical info re Gleason etc. We will ask on our appointment with his consultant. We don’t have a date yet as the psa  results only just came through. 


 


Many thanks. Info has been really helpful. 

User
Posted 03 Aug 2019 at 22:30
First up I don't think 22 is an acceptable PSA for any age, 193 definitely isn't.

If he is suffering early stage dementia you need to be very concerned about significant cancer treatments "pushing him over the edge" into full blown dementia.

So what would I do if it was my dad? First up you need some clarity from his medical team about whether any (or all) of his symptoms are PC related, you then need to asses the benefit versus QoL of any treatments (or non).

User
Posted 03 Aug 2019 at 22:48
It seems his cancer is now very active. It would be pure guesswork on the part of the doctors to try to say where the cancer is, without doing scans (including a bone scan). You need to be aware that:
- with a PSA of 190 there is a high risk that the cancer has spread
- if the tumour in his prostate is growing rapidly, it can prevent him from emptying his bladder properly
- not emptying his bladder increases the risk of UTI ... one side effect of a UTI being symptoms of confusion
- active cancer in bones can lead to too much calcium in the blood which has symptoms very similar to dementia

It may not be appropriate for dad to have surgery or radiotherapy but I suspect the specialist will say that he really, really needs hormones now to stop him from producing testosterone. It will have side effects which may include muscle weakness, fatigue and memory problems but should also improve things like urinary frequency. To be frank, the side effects of unchecked cancer are far worse than the possible effects of the meds.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2019 at 10:00

His GP rang him with his blood test result and both my Mum and I had a chat with the doctor. He did not seem to indicate urgency with the result, but that he would write to his Urologist to have a further assessment. The indications from this forum seem to indicate rather than this being a 'slow burn' cancer with the probability that, due to his age it is likely that some other condition could cause his end sooner, but that this is an quick acting one that requires immediate treatment? This goes against the original advice both the GP and the consultant gave. This is worrying but definitely something we need to be aware of. The doctor was saying that he has known patients with over 1000psa and not be affected by the condition. I did ask him if this was a significant life affecting moment and that we would want to know so as to ensure my Dad's affairs and comfort/support are in place. He seemed to back away from that being the position. To say I am confused is an understatement!

User
Posted 05 Aug 2019 at 13:19
The GP reaction makes no sense unless there is a bit of the story missing. Are you sure that dad isn't having any treatment? He definitely doesn't have a hormone injection every so often or take a hormone tablet each day? Or perhaps has had his testicles removed but not wanted to discuss it with you?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2019 at 15:23

Hi


Dad definitely isn't having any treatment. My brothers, myself and Mum went with him to the consultant appointment when it was advised at psa22 that we wait and watch. Not much 'watching' has been done other than his this last blood test which is a year later from being diagnosed with pc. It seems only when we, the family, think that something isn't quite right that they do tests. We had seen he had lost weight and he was def struggling to get up steps (lack of energy) and more tiredness with the 'power naps' in the day. They checked his salt levels (as they have always been low) and his psa. This returned with a level of 193psa. The doctor assured us that this level, while needing investigation, was not to worry too soon about. Wait for consultant assessment. 

User
Posted 05 Aug 2019 at 17:00

hi Jenny,


What was he latest PSA result then?  All the very best, there's a wealth of experience on forum. It's so difficult to get the full picture of someone's health and wellbeing ?  87 is his chronological age , I get the impression his biological age is far far less until recently ?


firstly have you POA . power of attorney health ?


Does dad live quite happily in a house, with stairs and with a large garden ?


has his dementia been diagnosed ? ie many types.


Has he ever had MRI or any biospies?


I agree with Lyn etc.  to paraphrase . What are your dads true wishes?   Who does he confide in ?


He needs to be comfortable at night and any bladder issues sorted at a minimum.  There can be a dominoe effect.  ie tired. getting up at night.  falling etc.


Again memory issues. Who is dealing with meds ? Who is validating what he's saying.


There are some numerous volunteer groups I'm sure who can support and advise.


I hope this helps.  He may not want to cause a fuss.. 


regards Gordon 


 


 


 

User
Posted 05 Aug 2019 at 18:01
It has risen from 22 to 193, Gordon - a doubling time of 3.8 months :-/

Jenny, one of the things to clarify when you see the specialist is whether it is up to your dad to arrange PSA tests. Men on active surveillance would usually have 3 monthly PSA (often done at the GP practice) with an annual appointment with the urologist or oncologist for DRE and a scan.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2019 at 21:15

Hello Lyn


The timeline is Oct 23rd he had an MRI scan and was all clear.Bloods - 22psa. 


His recent bloods, taken at the end of July, now has a reading of 193psa.


So this change has occurred within 9 months. Not looking good by the sound of things but still awaiting a consultant appt, it will be a couple of weeks before we get one of those I'm guessing. He is having a full blood work taken tomorrow to double check the last tests I believe. 

User
Posted 05 Aug 2019 at 21:47
Ah sorry - you said above that it was a year on. Doubling time is exactly 3 months then, which for many oncos is the trigger for starting or changing the treatment.

Fingers crossed for you that there was just a decimal point missing and the actual result is 19.3!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Sep 2019 at 18:40

UPDATE


We have now visited the consultant and he has placed my Dad on a hormone tablet treatment. He is also now booked in for a bone scan too as the doctor felt that the cancer may have spread. Dad's getting lower back pain. 


During the process of also booking him in at the GP for a hormone injection for two weeks time, I checked a previous letter my Dad had received from his first consultation with the consultant at the hospital. It stated that we were 'watching and waiting' but also asked that he be monitored by the GP with a view to check the psa levels didn't increase quickly or get to 50-100 psa. When I queried this with the practice manager, just to check to see if they had taken any blood tests for this, I found out that they hadn't. Further, that they were supposed to have taken a blood test within 6 months. We are now 9 months down the line and Dad has a psa of 193, with a likelihood that the cancer has spread. We only found this out as my Dad's dementia consultant had requested a salt level test due his feeling so tired all the time.They decided to tack on a psa test - luckily, I guess or we would still be in the dark re his cancer increase level. 


I guess that it's good news that the consultant didn't ask whether we should treat or consider quality of life issues. It was automatic to go onto the tablets, with a possibility of radiotherapy should the bone scan show up any further areas of concern. 

User
Posted 02 Sep 2019 at 00:39
Starting HT tablets is in fact starting treatment and it is very likely that this will lower Dad's PSA very considerably, and restrain the disease, at lest for a (undefinable) time. Unfortunately, this is likely to make dad more tired and possibly have some other side effects, although these may reduce after a time as his body becomes accustomed to tht HT. It seems more likely that any RT given in due course may be directed at mets if found from bone scan rather than a full course directed to the prostate location.Whilst this may help alleviate any pain caused by mets, RT may itself introduce some added side effects.
Barry
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK