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More annoyed than concerned

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User
Posted 22 Feb 2021 at 11:30

Hi guys, I'm new today. So about 5-6 years ago I decided to go to the GP for an MOT. He finds hardening on the right side of my prostate and refers me. So for about 5/6 years I have been under review. I'm now 62, 63 in June. Over that period I've been under the care of a "Consultant". My PSA has gone up from around 4.5 to the 6s for a number of years and within the last 6 months has gone up to 7.4/8/8.4. Over the years I've had a number of exams from the Consultant who has always said the prostate feels normal. He always advised against a biopsy and never mentioned an MRI Scan which I understand has been available for the last 2 years notwithstanding my father had prostate cancer and died of bone cancer. 


So recently he set up an MRI. I had an exam from the nurse who felt the hardening straight away. Seems I've got T2 inside the front lobe and T3a on the right. So had biospsies last week and awaiting a phone call this week/next to discuss my Gleeson score and treatment etc. Again this nurse felt the hardening straight away. She says no evidence of spread on the MRI but I'm going to ask for a bone scan as I've had pain in both hips and spine for a number of years, again mentioned to the "Consultant" over the years but which might be osteoarthritis but who knows.


Should have asked for a second opinion I guess. I've had the same issue before, a "Consultant" said a mole of my back looked ok a couple of times, wasn't happy and asked for a second opinion...turned out to be a Melanoma in situ


Losing confidence in Consultants fast. Not impressed but hopefully it isn't too late and I can get sorted out properly this time.


 

User
Posted 22 Feb 2021 at 12:31

Hi Im not surprised you have lost faith.   I'm similar age and for the last 5 years I have been under AS.    When first checked and everything felt fine they still did an MRI and 10 sample biopsy.   At that point my PSA was 4.5.   The samples showed signs of cancer but nothing aggressive and 12 months later 20 sample biospy.   Regular 3 month checks of my PSA continued and anual appointment with consultant.  


I've now recently completed treatment but right up the end the DRE examination was all felt to be normal which just goes to show its not always the full picture of what is going on.   At the pint of treatment my PSA was 9.6


I would also say if your not happy with the people your dealing with then go elsewhere.


 


All the very best and fingers crossed everything turns out ok


 

User
Posted 22 Feb 2021 at 14:50
You won't know your diagnosis until all the tests are complete, so it's as well not to make any assumptions. Once you know what's what you'll be able to make decisions about treatment.

Best wishes,

Chris
User
Posted 23 Feb 2021 at 07:35
I would insist on an MRI of your spine and a hip x-ray too so you can get the pain from those diagnosed. A bone scan is not that reliable for Micro Mets. Having an actual diagnosis of the hip / back pain will help keep the mind demons in the box!
User
Posted 23 Feb 2021 at 14:26

It's easy to understand your concerns.


I once thought I'd had very slow treatment for a skin cancer.  Although it later turned out that NICE guidelines were that cases like mine weren't to be treated as urgent.  Although at that time, 2008, they'd stretched non-urgent to 12 months which seemed a bit much.   That doctor is still there and I'm a bit suspicious of him after all those years.


Likewise there are doctors who fear being blamed for over treatment of Prostate Cancer.   Some people get annoyed when they're asked to have biopsies which sometimes don't go to plan or put someone in a lifetime of worry when actually it would have just lain dormant.


Your slow rising psa could be like that.  Although at 4.5 I'd have thought a biopsy would be called for.  Waiting years for it to rise to 6, then in the last 6 months to 8 seems rather questionable.  Also the hardness could be more pronounced now than it was then.  With your father having had it could have rung some alarm bells.


As for the pains, I had those in my hips starting during diagnosis and the medics all said it was a sports injury.  It didn't convince me though.   After my op the psa remained undetectable so my GP and the clinic doctor said if I'd had bone spread it would have shown by now.  It took a long time to convince me it was arthritis.


I'm just saying the above as an example of how your mind can start playing tricks while you're being diagnosed.  It's a stressful time.   The day before my op I woke up with my jaw semi-locked and jarring when I ate my breakfast.  If there is someone living with that affliction permanently then they seriously have my pity.  In all my life I hadn't known anything like that which I put down to sleeping differently due to anxiety of some form.


Get your bone scan done and the biopsy results and let's hope you're offered a full range of treatments.  All the best, Peter


 


 


 

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User
Posted 22 Feb 2021 at 12:31

Hi Im not surprised you have lost faith.   I'm similar age and for the last 5 years I have been under AS.    When first checked and everything felt fine they still did an MRI and 10 sample biopsy.   At that point my PSA was 4.5.   The samples showed signs of cancer but nothing aggressive and 12 months later 20 sample biospy.   Regular 3 month checks of my PSA continued and anual appointment with consultant.  


I've now recently completed treatment but right up the end the DRE examination was all felt to be normal which just goes to show its not always the full picture of what is going on.   At the pint of treatment my PSA was 9.6


I would also say if your not happy with the people your dealing with then go elsewhere.


 


All the very best and fingers crossed everything turns out ok


 

User
Posted 22 Feb 2021 at 14:50
You won't know your diagnosis until all the tests are complete, so it's as well not to make any assumptions. Once you know what's what you'll be able to make decisions about treatment.

Best wishes,

Chris
User
Posted 23 Feb 2021 at 07:35
I would insist on an MRI of your spine and a hip x-ray too so you can get the pain from those diagnosed. A bone scan is not that reliable for Micro Mets. Having an actual diagnosis of the hip / back pain will help keep the mind demons in the box!
User
Posted 23 Feb 2021 at 14:26

It's easy to understand your concerns.


I once thought I'd had very slow treatment for a skin cancer.  Although it later turned out that NICE guidelines were that cases like mine weren't to be treated as urgent.  Although at that time, 2008, they'd stretched non-urgent to 12 months which seemed a bit much.   That doctor is still there and I'm a bit suspicious of him after all those years.


Likewise there are doctors who fear being blamed for over treatment of Prostate Cancer.   Some people get annoyed when they're asked to have biopsies which sometimes don't go to plan or put someone in a lifetime of worry when actually it would have just lain dormant.


Your slow rising psa could be like that.  Although at 4.5 I'd have thought a biopsy would be called for.  Waiting years for it to rise to 6, then in the last 6 months to 8 seems rather questionable.  Also the hardness could be more pronounced now than it was then.  With your father having had it could have rung some alarm bells.


As for the pains, I had those in my hips starting during diagnosis and the medics all said it was a sports injury.  It didn't convince me though.   After my op the psa remained undetectable so my GP and the clinic doctor said if I'd had bone spread it would have shown by now.  It took a long time to convince me it was arthritis.


I'm just saying the above as an example of how your mind can start playing tricks while you're being diagnosed.  It's a stressful time.   The day before my op I woke up with my jaw semi-locked and jarring when I ate my breakfast.  If there is someone living with that affliction permanently then they seriously have my pity.  In all my life I hadn't known anything like that which I put down to sleeping differently due to anxiety of some form.


Get your bone scan done and the biopsy results and let's hope you're offered a full range of treatments.  All the best, Peter


 


 


 

 
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