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Father diagnosed

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User
Posted 29 Oct 2016 at 09:14

So, my father (late 70's) decided to visit the doctor a few weeks back as he was going to to the toilet 3-4 times during the night and so had some tests where they found small amount of blood in his urine and his PSA was at 18. We went to see the specialist yesterday where he confirmed our fears that he has prostate cancer (or rather he's 99% certain). They did other tests such as check his urine again (no blood and he's also not going to the toilet as much in the night), checked his bladder (perfectly normal), blood pressure (perfect), ultrasound (nothing found) and then a prostate check.

He's been fast-tracked for other tests where he goes for a bone scan on Tuesday, MRI scan on Wednesday and Biopsy on Thursday with a follow up appointment on the 14th November.

As I suspect with everybody on here, the initial shock was horrendous. Every time I thought about it I broke down in tears (even as I write this post, I'm tearful) and this morning when I woke up, initially thinking it was all a nightmare but then quickly realising it wasn't.

Just very concerned that as his PSA is 18 that it's far down the line - or does PSA not work like that? Ultimately will need to wait until we get his results to see how bad it is. In for a pretty horrible few weeks but I'm really hoping there's some kind of positive outcome so we can decide on a plan of action quickly.

 

User
Posted 29 Oct 2016 at 10:52
Hi Greencode

It's totally understandable that you are feeling as you are at this stage of the proceedings but this type of news is a bit of a shock and I suspect that you possibly feel a bit helpless at the moment. The PSA reading is flagging up that something may be amiss but it is the biopsy result that will confirm the diagnosis and give an indication as to the staging. If you check this site for the Toolkit and download it you find a lot of helpful information that should reassure you that your Dad is more likely to be at the start of a journey than approaching the end of it. There are many possibilities for treatments but try not to up set yourself as until you have the results of the scans and biopsy nobody knows what needs to be done. If you check out the Toolkit you might find that learning a bit more will help you understand what is happening.

Waiting is awful but if it is PCa then waiting will be something you become good at as most of are usually waiting for test results as part of the ongoing monitoring process. I am sure your Dad will also join the rest of us in just accep ting that this the new normal and ain't that bad.

Others who are more knowledgeable will respond I am sure but in the meantime chat to your Dad.

Kevan

User
Posted 29 Oct 2016 at 13:07

Hi Greencode,

Although no consolation if indeed your father has Prostate Cancer confirmed, the incidence of this disease increases with age so that by the time men reach their seventies about 70% of them will have some PCa. However, the far greater majority die of something else because often this is a very slow progressing cancer and where appropriate treatment can halt or slow progression. The important thing is to identify PCa at an early stage, so it can be monitored and treated if and when appropriate.

Barry
User
Posted 29 Oct 2016 at 18:15

A PSA of 18 is high but doesn't really indicate anything more than there is a problem - it sounds like when he first went to the GP he had a urinary tract infection or similar, which could have caused the raised PSA. A few men on here had a PSA of around 3 but it had spread to other parts of the body, I can think of men who had PSA over 100 but no sign of cancer was ever found. The highest PSA score among our members was 13,000 - he is still here three years later - and more recently a diagnosis at 6,000. The highest our urologist had ever come across was 160,000.

So while it is unusual for someone to be sent for a bone scan before they have had the MRI or biopsy, no point trying to guess what the outcome of all the tests is going to be. Once the doctors have all the test results they will probably discuss dad at a multi-disciplinary meeting and then at the 14th November appointment will give him their professional opinion about what treatment option(s) are suitable.

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

User
Posted 29 Oct 2016 at 22:40

Yes I think so, it probably felt hard or nobbly. It would be easy to panic with the bone scan coming first; that might be because the consultant could already feel it was advanced but it could just as easily be because the hospital appointment system is all to pot :-(

Still, no point guessing or tormenting yourself with worst case scenarios - you know now that the result is probably going to be a diagnosis of PCa but no way of telling whether it is curable or advanced so don't waste energy on the things that might never happen.

Order the toolkit from the number at top of this page so that you begin to get your heads around all the different stages and scores, plus the various treatments. Then when you go for the appointment you will be well prepared with the questions you want to ask and info that will help you make sense of whatever they advise in terms of treatment.

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

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User
Posted 29 Oct 2016 at 10:52
Hi Greencode

It's totally understandable that you are feeling as you are at this stage of the proceedings but this type of news is a bit of a shock and I suspect that you possibly feel a bit helpless at the moment. The PSA reading is flagging up that something may be amiss but it is the biopsy result that will confirm the diagnosis and give an indication as to the staging. If you check this site for the Toolkit and download it you find a lot of helpful information that should reassure you that your Dad is more likely to be at the start of a journey than approaching the end of it. There are many possibilities for treatments but try not to up set yourself as until you have the results of the scans and biopsy nobody knows what needs to be done. If you check out the Toolkit you might find that learning a bit more will help you understand what is happening.

Waiting is awful but if it is PCa then waiting will be something you become good at as most of are usually waiting for test results as part of the ongoing monitoring process. I am sure your Dad will also join the rest of us in just accep ting that this the new normal and ain't that bad.

Others who are more knowledgeable will respond I am sure but in the meantime chat to your Dad.

Kevan

User
Posted 29 Oct 2016 at 13:07

Hi Greencode,

Although no consolation if indeed your father has Prostate Cancer confirmed, the incidence of this disease increases with age so that by the time men reach their seventies about 70% of them will have some PCa. However, the far greater majority die of something else because often this is a very slow progressing cancer and where appropriate treatment can halt or slow progression. The important thing is to identify PCa at an early stage, so it can be monitored and treated if and when appropriate.

Barry
User
Posted 29 Oct 2016 at 18:15

A PSA of 18 is high but doesn't really indicate anything more than there is a problem - it sounds like when he first went to the GP he had a urinary tract infection or similar, which could have caused the raised PSA. A few men on here had a PSA of around 3 but it had spread to other parts of the body, I can think of men who had PSA over 100 but no sign of cancer was ever found. The highest PSA score among our members was 13,000 - he is still here three years later - and more recently a diagnosis at 6,000. The highest our urologist had ever come across was 160,000.

So while it is unusual for someone to be sent for a bone scan before they have had the MRI or biopsy, no point trying to guess what the outcome of all the tests is going to be. Once the doctors have all the test results they will probably discuss dad at a multi-disciplinary meeting and then at the 14th November appointment will give him their professional opinion about what treatment option(s) are suitable.

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

User
Posted 29 Oct 2016 at 19:35

Thanks for all your replies. Really helpful and reassuring as well.

I'm actually wondering now how the consultant said he had PC. As previously mentioned he had a few tests (ultrasound, blood pressure, urine sample, camera up to the bladder and finger up the rectum) but surely they can't tell it's PC until the biopsy - is that correct?

Listening back to the voice recording I took of the consultation he said "… I think you've got prostate cancer after examining your prostate it feels as though it's started to grow outside of the prostate which would be in keeping with the PSA blood test of 18 …"

Obviously he does this day in day out so he probably just knows what PC feels like?!

User
Posted 29 Oct 2016 at 22:40

Yes I think so, it probably felt hard or nobbly. It would be easy to panic with the bone scan coming first; that might be because the consultant could already feel it was advanced but it could just as easily be because the hospital appointment system is all to pot :-(

Still, no point guessing or tormenting yourself with worst case scenarios - you know now that the result is probably going to be a diagnosis of PCa but no way of telling whether it is curable or advanced so don't waste energy on the things that might never happen.

Order the toolkit from the number at top of this page so that you begin to get your heads around all the different stages and scores, plus the various treatments. Then when you go for the appointment you will be well prepared with the questions you want to ask and info that will help you make sense of whatever they advise in terms of treatment.

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

User
Posted 14 Nov 2016 at 09:52

A quick update…

My father had the bone scan, MRI and biopsy the week before last. Goes in for the the follow up appointment with the specialist tomorrow morning. Very nervous at the moment with what they might say.

The consultant, when he had his biopsy, said he had seen the bone scan results and couldn't see any obvious signs of spread but he also said not to hold him to that as the MRI and biopsy will be the key tests.

Fingers crossed for tomorrow.

User
Posted 15 Nov 2016 at 11:45

Just got back from the clinic. The outcome… He does indeed have prostate cancer with a gleason score of 9. The cancer has not spread to any further than the prostate (it's just starting to come out of the prostate but not much at all). So, they've now put him on a course of tablets for the next month with monthly injections (hormone therapy) and then in March(ish) time next year he'll have a 7-8 week radiotherapy course.

So, whilst it's rubbish, I think it could have been a lot worse.

User
Posted 15 Nov 2016 at 23:20

Hi greencode,

Unfortunately, with a Gleason of 9 an aggressive cancer and a quite usual way of dealing with it is planned. If you could ascertain the staging and show this along with Gleason and PSA on diagnosis and any other diagnostic information under Profile, this would be a useful future reference as such information given only in threads tends to be lost over time.

Barry
User
Posted 17 Dec 2016 at 10:26

Originally Posted by: Online Community Member

Hi greencode,

Unfortunately, with a Gleason of 9 an aggressive cancer and a quite usual way of dealing with it is planned. If you could ascertain the staging and show this along with Gleason and PSA on diagnosis and any other diagnostic information under Profile, this would be a useful future reference as such information given only in threads tends to be lost over time.

Sorry I haven't replied sooner. I didn't receive any notifications!

I've added the following details to my Profile: 

1. Bilateral extensive adenocarcinoma of the prostate with Gleason score 4+5=9 (involving all 12 cores), PSA 18

2. Prostate volume 33 cc

3. MRI staging T3b N0 (2/11/2016)

4. Bone scan negative for metastatic disease (1/11/2016)

User
Posted 17 Dec 2016 at 11:50

The HT should put a brake on the advance of the cancer and help shrink the Prostate making the RT more effective when given. HT usually reduces PSA very much and quite quickly. It may be that Dad will continue to have HT after the RT also.

So the immediate way forward is now known and it's a matter of monitoring his response.

Barry
 
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