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

Notification

Error

Dad's Prostate Cancer History

Email this conversation Print this conversation
User
Posted 06 Feb 2017 at 15:48

Hi all

I just wondered what everyone on here thinks of this regarding my Dad. He has recently been diagnosed with PC, Gleason 3+4, PSA 41, T3 and has been prescribed hormone tablets to shrink the prostate as it is very enlarged. He had a biopsy in December and bone scan, which thankfully was clear, but no other tests. We have since found out that his PSA was around the same mark in April & August of this year and yet nothing was done, in fact he wasn't even told there was a problem. He is naturally very worried. But what has really dumbfounded me is that 6/7 years ago he was referred to a Urologist as his PSA was 6 and his prostate was slightly enlarged. The consultant confirmed the enlarged prostate but said to my Dad, "I wouldn't worry about it because at your age you will die of something else". He is 87 now so was 80 at the time. No other tests were carried out and he wasn't checked for 5 years. I have only just found this out.

Now I am so annoyed about this as, had I known this at the time, I would have had my PSA checked more often and possibly my PC would have been picked up earlier and instead of having to have Brachytherapy 2 years ago I could have had medication to halt the PC progress. I was asked when I was diagnosed if there was any history of PC in my family to which I replied no. So, not only has my Dad been totally let down, I feel I have as well.

As you can probably understand,  we feel absolutely let down by all of this. We have demanded an appointment with Dad's GP next Monday and are going to make an appointment to see someone at our hospital where Dad saw the consultant. 

I would welcome anyone else's thoughts on this. I am so angry at the moment I could scream.

Thank you in anticipation. 

Alan

User
Posted 06 Feb 2017 at 17:05

Alan,

I think you're being a little hard on the medics.

You've had treatment that hopefully will cure your PCa, your previous posts certainly indicate good results so far. You say "I could have had medication to halt the PC progress", that would have been HT and it wouldn't have cured anything.

It was suspected that your Dad had PCa when he was 80. He is now 87 and presumably has had 7 good years. He's Gleason 7 and therefore there is every reason to suspect that HT will give him several more good years. If he'd had surgery/RT at 80+ it could have blighted his life.

Just my 2p's worth.

David

User
Posted 07 Feb 2017 at 00:09

Sorry Lyrical, I am not sure I can see what there is to be angry about? Do you definitely know that dad had PCa when he was 80? On the basis that about 80% of 80 year olds have it and many will choose not to have treatment, it doesn't seem that surprising to me that he may have been in a similar situation to many others his age. And if he was only diagnosed at 80 or 87 it is extremely unlikely to be the version that has genetic links and therefore implications for you - the BRCA genes tend to show themselves in men diagnosed with PCa at a young age with female relatives having breast cancer. It doesn't sound like your dad's illness fits that model? Plus I am not aware of any medication that could have halted your disease, even if you had been diagnosed earlier? You would still have had to make choices about treatment or active surveillance.

I hope it isn't dad you are angry with; lots of men of that generation are probably reluctant to discuss prostate problems with family. We have a friend who had the awful experience of organising a secret private funeral for his dad - he couldn't talk to any of us about his dad's death because the dad had left written instructions that he wanted no-one to know he had died of PCa. It only came to light many months later when John was diagnosed and we set about telling our friends.

I hope that the meetings you have planned answer some of your questions and give you peace of mind.

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

User
Posted 07 Feb 2017 at 10:55

Alan

I go some way with you. Those with PSA of 6 are usually monitored more frequently. If that wasn't offered to your dad on the basis of age then questions need to be asked. The fact older men have some PCa cells at 80 doesn't mean it can't be aggressive at some point - back to closer monitoring. As regards treatment if not offered due to it impacting on his life that should have been your dad's choice not the consultants.

Closer monitoring, if you were informed of it, may have resulted in an earlier diagnosis but no medication I'm aware of would slow the growth but you might have changed diet in the hope it would of.

Just my thoughts

Ray

Edited by member 07 Feb 2017 at 11:15  | Reason: Not specified

User
Posted 07 Feb 2017 at 13:34

Alan

More frequent tests if only every 2 years could well have picked up a steady or sharper rise. Also your dad being aware might have taken more note of any changes such as an increase in bladder frequency.

Have a good weekend yourself. .

Ray

User
Posted 07 Feb 2017 at 13:52

I know someone of similar age with similar story. In his case the urologist advised that it might or might not be prostate cancer but was likely to be early stage and indeed, he was likely to die of something else. On that basis, the man declined a biopsy. It is just possible that your dad did not agree to a biopsy when he was 80 (or was guided away from having one) in which case he didn't have a diagnosis to discuss with you.

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

User
Posted 07 Feb 2017 at 15:19

Hi Alan

Please do write down exactly what you would like to know (in my opinion) as this is far more complex than I initially thought and also a lot of background info/history is missing on the post.

ie The GP from what you have posted (for your Dad in 2009 (7 yrs ago?)  - did in my opinion do absolutely correct (many may have not).  He/She referred dad to an Urologist  ?

You could request with your fathers permission any correspondence on file / letters etc . A lot of the terms and values are 'meaningless ' unless you obviously told in an informed way  (ie I knew zero about Gleason and it's impact until diagnosed)  

Apologies, I haven't visited all your posts and may have missed something.  The issues that spring to mind are :

1. Was dad asymptomatic 2. Why was he going to GP ? 3.  Did he like my father (see my profile) keep it completely secret (* my circumstances are very different as 40 years ago attitudes to the 'C' word were extremely different) .  4. Did he have DRE ? (and what were results ?)

He wasn't diagnosed in 2009 with PC at all, from your posts and a PSA value of 6 is actually not high (very borderline) for an 80 year old ..  Do you follow the logic ? GP would have done his/her job ..    The key issue is was dad on Active Surveillance  or not ? 

I would have expected a PSA test every couple of years for him (again is there any evidence these were requested or not ?)  ie in a fit and very healthy n 80 yr old man, the dilemma is whether to actually find  prostate cancer, (a biospy is the only option, which is not risk free) and a 'Quality of life balance'  , even if the cancer is found and treated. ?  As others above have posted, the negatives start outweighing the positives.  Hopefully your dad can live a lot more active years.    

May I ask re. your diagnosis - why brachy ? and what options were you given ?    The fact you neither knew dad had PCa or not wouldn't have made any difference.  Why do you consider it would ?  You presented with symptoms (I assume ) and took the best course of action with the information you had available  to you ?     He was over 80 yrs old, the point being made and already made , > 80 % or more  of men over 80 with have some mutant cells in their prostates.        In summary for both you and your dad what actual questions do you want answering and how could these have produced a differing outcome ?

I hope this helps clarify your views and actions required.  It is difficult and many of us, if not all will empathise strongly.   For instance;  My mum lacked 'mental capacity' in the last few years;  and we had power of attorney. (dementia took her not cancer, however just getting her to see a GP and any treatment was a challenge). Physically like at ox and lived beyond 90.    

Edited by member 07 Feb 2017 at 15:41  | Reason: Not specified

Show Most Thanked Posts
User
Posted 06 Feb 2017 at 17:05

Alan,

I think you're being a little hard on the medics.

You've had treatment that hopefully will cure your PCa, your previous posts certainly indicate good results so far. You say "I could have had medication to halt the PC progress", that would have been HT and it wouldn't have cured anything.

It was suspected that your Dad had PCa when he was 80. He is now 87 and presumably has had 7 good years. He's Gleason 7 and therefore there is every reason to suspect that HT will give him several more good years. If he'd had surgery/RT at 80+ it could have blighted his life.

Just my 2p's worth.

David

User
Posted 07 Feb 2017 at 00:09

Sorry Lyrical, I am not sure I can see what there is to be angry about? Do you definitely know that dad had PCa when he was 80? On the basis that about 80% of 80 year olds have it and many will choose not to have treatment, it doesn't seem that surprising to me that he may have been in a similar situation to many others his age. And if he was only diagnosed at 80 or 87 it is extremely unlikely to be the version that has genetic links and therefore implications for you - the BRCA genes tend to show themselves in men diagnosed with PCa at a young age with female relatives having breast cancer. It doesn't sound like your dad's illness fits that model? Plus I am not aware of any medication that could have halted your disease, even if you had been diagnosed earlier? You would still have had to make choices about treatment or active surveillance.

I hope it isn't dad you are angry with; lots of men of that generation are probably reluctant to discuss prostate problems with family. We have a friend who had the awful experience of organising a secret private funeral for his dad - he couldn't talk to any of us about his dad's death because the dad had left written instructions that he wanted no-one to know he had died of PCa. It only came to light many months later when John was diagnosed and we set about telling our friends.

I hope that the meetings you have planned answer some of your questions and give you peace of mind.

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

User
Posted 07 Feb 2017 at 10:55

Alan

I go some way with you. Those with PSA of 6 are usually monitored more frequently. If that wasn't offered to your dad on the basis of age then questions need to be asked. The fact older men have some PCa cells at 80 doesn't mean it can't be aggressive at some point - back to closer monitoring. As regards treatment if not offered due to it impacting on his life that should have been your dad's choice not the consultants.

Closer monitoring, if you were informed of it, may have resulted in an earlier diagnosis but no medication I'm aware of would slow the growth but you might have changed diet in the hope it would of.

Just my thoughts

Ray

Edited by member 07 Feb 2017 at 11:15  | Reason: Not specified

User
Posted 07 Feb 2017 at 12:05

Thanks for your thoughts everyone. I posted yesterday just after I had received the news so, in hindsight, I should probably have waited a while. I realise that my situation probably would not have changed much, but I just wish I had known about Dad's situation 6 years ago and then at least I could have at least tried something, even if as Ray says, it was only change my diet or explore other options to try and prevent, or at least slow down the PC. I guess I am annoyed at my Dad for not telling me at the time, but as you say Lyn, maybe he just didn't want to talk about it at the time. However he insists he was not informed he had PC at the time. I still do not understand why he was not monitored more closely given the concerns 6 years ago, and to not have another PSA test for that length of time does not seem right to me. His PSA was only 6 back then, now it is 41, Surely annual checks would have picked things up earlier and given him a choice of treatments, or maybe I am wrong in assuming this. Whilst I agree with you David that he has had seven good years surely he should have been given a clearer picture about his situation. He just feels now that they haven't bothered doing anything for him because of his age so is understandably upset about this. My Dad is a very fit & active 80 year old and this latest news has knocked him for six and he is becoming quite depressed. We have arranged the appointment to try and get a clearer picture, and ask why he has not been closely monitored.

I thank you all once again and will keep you informed as to his progress and the outcome of the meeting next week.

Hope you all have a lovely week.

Alan

User
Posted 07 Feb 2017 at 13:34

Alan

More frequent tests if only every 2 years could well have picked up a steady or sharper rise. Also your dad being aware might have taken more note of any changes such as an increase in bladder frequency.

Have a good weekend yourself. .

Ray

User
Posted 07 Feb 2017 at 13:52

I know someone of similar age with similar story. In his case the urologist advised that it might or might not be prostate cancer but was likely to be early stage and indeed, he was likely to die of something else. On that basis, the man declined a biopsy. It is just possible that your dad did not agree to a biopsy when he was 80 (or was guided away from having one) in which case he didn't have a diagnosis to discuss with you.

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

User
Posted 07 Feb 2017 at 15:19

Hi Alan

Please do write down exactly what you would like to know (in my opinion) as this is far more complex than I initially thought and also a lot of background info/history is missing on the post.

ie The GP from what you have posted (for your Dad in 2009 (7 yrs ago?)  - did in my opinion do absolutely correct (many may have not).  He/She referred dad to an Urologist  ?

You could request with your fathers permission any correspondence on file / letters etc . A lot of the terms and values are 'meaningless ' unless you obviously told in an informed way  (ie I knew zero about Gleason and it's impact until diagnosed)  

Apologies, I haven't visited all your posts and may have missed something.  The issues that spring to mind are :

1. Was dad asymptomatic 2. Why was he going to GP ? 3.  Did he like my father (see my profile) keep it completely secret (* my circumstances are very different as 40 years ago attitudes to the 'C' word were extremely different) .  4. Did he have DRE ? (and what were results ?)

He wasn't diagnosed in 2009 with PC at all, from your posts and a PSA value of 6 is actually not high (very borderline) for an 80 year old ..  Do you follow the logic ? GP would have done his/her job ..    The key issue is was dad on Active Surveillance  or not ? 

I would have expected a PSA test every couple of years for him (again is there any evidence these were requested or not ?)  ie in a fit and very healthy n 80 yr old man, the dilemma is whether to actually find  prostate cancer, (a biospy is the only option, which is not risk free) and a 'Quality of life balance'  , even if the cancer is found and treated. ?  As others above have posted, the negatives start outweighing the positives.  Hopefully your dad can live a lot more active years.    

May I ask re. your diagnosis - why brachy ? and what options were you given ?    The fact you neither knew dad had PCa or not wouldn't have made any difference.  Why do you consider it would ?  You presented with symptoms (I assume ) and took the best course of action with the information you had available  to you ?     He was over 80 yrs old, the point being made and already made , > 80 % or more  of men over 80 with have some mutant cells in their prostates.        In summary for both you and your dad what actual questions do you want answering and how could these have produced a differing outcome ?

I hope this helps clarify your views and actions required.  It is difficult and many of us, if not all will empathise strongly.   For instance;  My mum lacked 'mental capacity' in the last few years;  and we had power of attorney. (dementia took her not cancer, however just getting her to see a GP and any treatment was a challenge). Physically like at ox and lived beyond 90.    

Edited by member 07 Feb 2017 at 15:41  | Reason: Not specified

 
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