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Just diagnosed yesterday.

User
Posted 21 Feb 2020 at 14:41

Hello everyone.  Been lurking here for a while but, this is my first post, since joining the worst club in the world!

I noticed that I had problems emptying my bladder properly last November and, for once in my life, I went straight to the Doctor.  He did a DRE and, I had a blood test.  My PSA came back at 104.  At this point, I had little understanding about prostate cancer but, that was all about to change, mostly because of this website.

There then followed the familiar ride that many of you will be familiar with.  I got an urgent referral to my hospital and, over the course of christmas and the new year, I had an MRI, CT and bone scan done, along with another PSA test.  Then, a biopsy in January, where the consultant "only" took 6 samples as he had "2 clear targets to aim for".

To cut a long story short, yesterday, I saw another consultant (a locum), who confirmed what I already knew, that I had prostate cancer.  Gleason of 9 and a T3b staging, PSA up to 130.  He also requested a further bone scan, as my orignal one was "inconclusive", especially after I told him about my catalogue of previous injuries to ribs and other bones due to my time in the Army and, my active lifstyle.

So, now begins the wait for treatment, which I assume will be based on the extra bone scan?  I'm on Bicalutamide and, am having a Prostap depot injection in a couple of days as well and, I had another blood test on my way out of the hospital as well to see if the Bicalutamide is working.  I am actually pee'ing better now, which the doctor said was a sign that the tablets are having an effect.  I have no other symptoms and, am, at the moment, healthy and active.

I'm holding it together and, trying to be as realistic as I can about it all, if nothing else, for the sake of my wife, who is in total meltdown about it.  The doctor refused to give me a prognosis, apart from saying I was young and healthy enough to last a while yet.   Been trying to take my mind off it all by putting in my critical illness claim on my life policy and, booking myself a parachuting course!

User
Posted 24 Feb 2020 at 15:49
Hi Pete,

I am being treated for PCa in excess of 10 years. On Pros 3 all that time in addition to other medicines. In spite of all that I have had a normal life for the entire period. The initial period is the worrying time because of the unknown. It will all settle down in due course

and you look forward to several years of happy life. You have done the right thing by joining this forum and most of the information you need has been discussed at some time or other.

I will be happy to chat to you anytime

Cheers

Noel

User
Posted 21 Feb 2020 at 14:41

Hello everyone.  Been lurking here for a while but, this is my first post, since joining the worst club in the world!

I noticed that I had problems emptying my bladder properly last November and, for once in my life, I went straight to the Doctor.  He did a DRE and, I had a blood test.  My PSA came back at 104.  At this point, I had little understanding about prostate cancer but, that was all about to change, mostly because of this website.

There then followed the familiar ride that many of you will be familiar with.  I got an urgent referral to my hospital and, over the course of christmas and the new year, I had an MRI, CT and bone scan done, along with another PSA test.  Then, a biopsy in January, where the consultant "only" took 6 samples as he had "2 clear targets to aim for".

To cut a long story short, yesterday, I saw another consultant (a locum), who confirmed what I already knew, that I had prostate cancer.  Gleason of 9 and a T3b staging, PSA up to 130.  He also requested a further bone scan, as my orignal one was "inconclusive", especially after I told him about my catalogue of previous injuries to ribs and other bones due to my time in the Army and, my active lifstyle.

So, now begins the wait for treatment, which I assume will be based on the extra bone scan?  I'm on Bicalutamide and, am having a Prostap depot injection in a couple of days as well and, I had another blood test on my way out of the hospital as well to see if the Bicalutamide is working.  I am actually pee'ing better now, which the doctor said was a sign that the tablets are having an effect.  I have no other symptoms and, am, at the moment, healthy and active.

I'm holding it together and, trying to be as realistic as I can about it all, if nothing else, for the sake of my wife, who is in total meltdown about it.  The doctor refused to give me a prognosis, apart from saying I was young and healthy enough to last a while yet.   Been trying to take my mind off it all by putting in my critical illness claim on my life policy and, booking myself a parachuting course!

User
Posted 21 Feb 2020 at 15:37
Sorry you have joined the club. Are the doctors doing upfront chemotherapy too?

Have a look here https://prostatecanceruk.org/prostate-information/treatments/choosing-a-treatment

It sounds like you are either locally advanced or advanced depending on the repeat MRI results.

You will get lots of support and information here for both you and your wife.

Best wishes,

Ido4

User
Posted 21 Feb 2020 at 18:02

Hi Pete

I like you am 52, and was diagnosed Dec 19th. Ive never had any symptoms of PC and only found out by chance, however after a platelet biopsy showed a Gleason score of 7 4&3 and my Psa was 13, I had a bone scan which thankfully was all clear which was incredibly worrying at the time but a relief when I got the all clear. My hospital has been very good to couldn’t ask for more really under the circumstances. I’ve got an appointment Friday 28th Feb to see the surgeon who is carrying out my robotic assist surgery. So I’m starting to get a little anxious but I’m sure I’ll be ok on the day.

One thing you might want to do, if you hadn’t already is find a local Prostate Cancer group. I was a bit unsure at first but once I attended the first meeting it helped me beyond belief. Not sure if your like me but I’m a real worrier so after my initial diagnosis I was scarred and worried but the guys at the meeting were really informative and spoke openly and no holes barred. The medical professionals a superb, but you can’t beat listening to guys who have been and are going through the same as you.

Keep positive and try not to worry to much.

Carl.

User
Posted 21 Feb 2020 at 18:57

Hi Pete, 

Don't worry too much about the change in psa. I had two tests within two weeks and my psa dropped 25%. So different labs, doctors prodding your prostate will cause the figure to jump around a bit. Of course a psa in the region of 100 isn't great, but don't assume it is rising based on two tests.

One good (well not so bad) thing about PCa, at least for most people is that the moment you start HT it puts the brakes on. So whilst all the tests are being done and doctors are having meetings you are not getting any worse. In fact if RT ends up being your treatment a few months of prior HT leads to better outcomes.

I'm T3 G9 psa was 28 at diagnosis. MDT team only had one proposed treatment plan for me, which is great; people on this forum are always worrying what treatment to have, and afterwards whether they made the right choice. For me it was HDR brachy, EBRT, two years HT. I'm not saying I like it but it is not too bad, and other than the obvious problems of no testosterone I've not had bad side effects. 

Best of luck. 

Dave

User
Posted 24 Feb 2020 at 14:03

I am sorry that you find yourself a member of the pc gents but it does sound as if you have a great team of people looking after you.

My oh has had it since 2010 so has done well, as have many of the men on here. The diagnosis is hard but there are many combinations of treatments. We have found that the care given has been good and that the nurses are very supportive.

I hope all goes well for you.

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User
Posted 21 Feb 2020 at 15:37
Sorry you have joined the club. Are the doctors doing upfront chemotherapy too?

Have a look here https://prostatecanceruk.org/prostate-information/treatments/choosing-a-treatment

It sounds like you are either locally advanced or advanced depending on the repeat MRI results.

You will get lots of support and information here for both you and your wife.

Best wishes,

Ido4

User
Posted 21 Feb 2020 at 16:22
Thanks Ido. Not having chemo (yet). I know there's been an MDT meeting about me and that my consultant is waiting for the new bone scan results before deciding if it's chemo or radiotherapy that I will receive. Got a phone call from the imaging department about an hour ago, with an appointment in 4 days time.

I can't fault my hospital, they've been great. I've had several appointment letters that have actually been changed via a phone call, asking me if I can make earlier dates when other people have cancelled. My urologist started me on Bicalutamide on the day of my biopsy, as he didn't want to waste time waiting for the results. I've also been referred to a "brilliant" oncologist as well. So, I know I'm in good hands. The thing that concerns me is that my PSA rose but, am hoping the bloods I had yesterday will show an improvement.

Got to stay positive and, I know there's a lot of people a lot worse off than me. People keep telling me that I'm "still young" (at 52) and, have a good chance of lasting for a while yet.

User
Posted 21 Feb 2020 at 18:02

Hi Pete

I like you am 52, and was diagnosed Dec 19th. Ive never had any symptoms of PC and only found out by chance, however after a platelet biopsy showed a Gleason score of 7 4&3 and my Psa was 13, I had a bone scan which thankfully was all clear which was incredibly worrying at the time but a relief when I got the all clear. My hospital has been very good to couldn’t ask for more really under the circumstances. I’ve got an appointment Friday 28th Feb to see the surgeon who is carrying out my robotic assist surgery. So I’m starting to get a little anxious but I’m sure I’ll be ok on the day.

One thing you might want to do, if you hadn’t already is find a local Prostate Cancer group. I was a bit unsure at first but once I attended the first meeting it helped me beyond belief. Not sure if your like me but I’m a real worrier so after my initial diagnosis I was scarred and worried but the guys at the meeting were really informative and spoke openly and no holes barred. The medical professionals a superb, but you can’t beat listening to guys who have been and are going through the same as you.

Keep positive and try not to worry to much.

Carl.

User
Posted 21 Feb 2020 at 18:57

Hi Pete, 

Don't worry too much about the change in psa. I had two tests within two weeks and my psa dropped 25%. So different labs, doctors prodding your prostate will cause the figure to jump around a bit. Of course a psa in the region of 100 isn't great, but don't assume it is rising based on two tests.

One good (well not so bad) thing about PCa, at least for most people is that the moment you start HT it puts the brakes on. So whilst all the tests are being done and doctors are having meetings you are not getting any worse. In fact if RT ends up being your treatment a few months of prior HT leads to better outcomes.

I'm T3 G9 psa was 28 at diagnosis. MDT team only had one proposed treatment plan for me, which is great; people on this forum are always worrying what treatment to have, and afterwards whether they made the right choice. For me it was HDR brachy, EBRT, two years HT. I'm not saying I like it but it is not too bad, and other than the obvious problems of no testosterone I've not had bad side effects. 

Best of luck. 

Dave

User
Posted 24 Feb 2020 at 11:24

Had a follow up today with an absolute superstar of a nurse, who gave me my Prostap injection and, also the news that my PSA has dropped to 54.  This was a big relief to me and, even more so to my wife.

I have another nuclear bone scan tomorrow and, more appointments throughout March.

So things are  moving along and, the treatment is having an effect.

User
Posted 24 Feb 2020 at 14:03

I am sorry that you find yourself a member of the pc gents but it does sound as if you have a great team of people looking after you.

My oh has had it since 2010 so has done well, as have many of the men on here. The diagnosis is hard but there are many combinations of treatments. We have found that the care given has been good and that the nurses are very supportive.

I hope all goes well for you.

User
Posted 24 Feb 2020 at 15:49
Hi Pete,

I am being treated for PCa in excess of 10 years. On Pros 3 all that time in addition to other medicines. In spite of all that I have had a normal life for the entire period. The initial period is the worrying time because of the unknown. It will all settle down in due course

and you look forward to several years of happy life. You have done the right thing by joining this forum and most of the information you need has been discussed at some time or other.

I will be happy to chat to you anytime

Cheers

Noel

 
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