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Oompa Loompa

Experience with Prostate Cancer

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Hi mate,

That call from the Dr can be a bit scary. I was told by people in the medical field that the reason Dr's don't like to use PSA blood tests is that the volume of false positives (I think that is the term) can throw the stats out ...............

Based on my experience, get the tests done and sleep well at night, but each to their own.

Good luck with it all.

Cheers

NSF

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Go easy the next step is go see a urologist, then there is another investigation a TRUS trans rectal ultra sound and biopsy. 

The renal ultra sound and 24 hour BP monitors are not routine for high PSA, you must have high blood pressure 

The PSA level relates to size of prostate, it being high could possibly be due to large prostate. May just be a case of keeping an eye on it, maybe down the track may need channel widening TURP trans urethral resection prostate.

I had my PSA level checked before Christmas, I didn't ride a bike for over a week beforehand. My level was above the middle of normal for my age, so I've been advised to recheck in 5 years. 

Thinking about you mate and hoping everything turns out OK

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10 minutes ago, Clappers said:

The renal ultra sound and 24 hour BP monitors are not routine for high PSA, you must have high blood pressure. 

The Doc did also say that I had high blood pressure, but I'm pretty sure he said the renal ultrasound was to check the prostate.  The notes on the request form are 'Renal US (High PSA, exclude prostate pathology). 

 

14 minutes ago, Clappers said:

 The PSA level relates to size of prostate, it being high could possibly be due to large prostate...

Well, you know what they say...  'Large Prostate, Large... '  Haha :lol:

Thanks guys, I'm not panicking just yet but it does make you think.

Hope you're going ok too Clappers.  Thanks for the info.

 

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56 minutes ago, Notsofast said:

That call from the Dr can be a bit scary...

I'll say... but like you said earlier, not much you can do about it, just get on with it.

58 minutes ago, Notsofast said:

Based on my experience, get the tests done and sleep well at night, but each to their own.

Thanks mate, your experience is valued!

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I had a borderline high PSA - 4.1 - and decided to do all the tests, including a biopsy. Everything was negative, except for one inclusive biopsy sample (out of 14), which was non-positive, non-negative. Been doing annual tests and exams with a urologist ever since, and everything has stayed stable. My prostate is somewhat enlarged, but not to the point of being a problem. It's good to know what you're dealing with and what you need to keep an eye on.

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I've been dealing with prostate problems since my mid-30s, it is very enlarged but 2 biopsies, ultrasounds and a special MRI say no cancer.  I now take medication (Tamulosin) for the waterworks issues it causes & have a PSA test every 6mths.  I have an excellent urologist in Port Macquarie, Dr Nader Awad, one of those rare specialists who takes the time to explain everything to you properly.

Re the PSA test, it is not so much the absolute level, but a significant change that they look for.  Mine went up over 10 or so years from about 3 to 7.  To put that in perspective, my mates brother who was younger than me died of prostate cancer last week & his PSA was in the 100's.

They now think an enlarged prostate (the benign type I seem to have - not the cancerous type) is due to one of the breakdown products of Testosterone.  There is medication (Duodart) to stop that breakdown product which I tried for a while, but it tends to put more estrogen in your system which I did not like, so I stopped that drug & just went back to Tamulosin which assists with peeing issues.  Also, Duodart will halve your PSA level so re-set the baseline which they track.

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17 hours ago, roxii said:

Firstly good luck mate. 

Secondly I don't think any testing is a problem, the more information the better. 

I think its the next possible step where the real conjecture lies, with treatment options and there relative merits versus side effects. 

Not an expert but I suppose it depends where the test results lead you. 

I did hear once though that lots of men die with prostate cancer, not too many die of prostate cancer. 

But I suppose that perspective all changes when just one of those people becomes YOU. 

Again good luck mate. 

Ditto to what Roxxi said.

Goeasy, you'd probably remember the old man having prostate cancer since 2009. Fast forward 10 years and he's back on top of the world, although has a permanent catheter. He runs the local mens prostate support group (youngest by 10 years mind you) where he helps men who have been diagnosed with prostate cancer and the fear or troubles they face. 

If you need anyone to talk to, the old man would be more than happy to talk. 

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11 hours ago, alexholbrook said:

Goeasy, you'd probably remember the old man having prostate cancer since 2009. Fast forward 10 years and he's back on top of the world, although has a permanent catheter. He runs the local mens prostate support group (youngest by 10 years mind you) where he helps men who have been diagnosed with prostate cancer and the fear or troubles they face.

Cheers mate, it's great to hear he's doing well and is now able to help others.

It's still early days for me, I guess I'll know a bit more when I get the results from the next lot of tests and ultrasound.  I'll keep it in mind about chatting to your old man, my first question might be about where I'm supposed to carry my catheter when I go for a run!!

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A friend had his most recent annual bloods done and whilst it was not high at all, his figure had gone up a bit.

Doctor said all good, don't worry as it's low.

Got a second opinion and had to have the operation... they said he would have had 6 months - it was super aggressive.  Aged 60.

 

Moral of the story - get the blood test done so at least you have a baseline to work off.

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18 hours ago, BC_J400 said:

 

Moral of the story - get the blood test done so at least you have a baseline to work off.

Spot on

NSF

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On 31/03/2014 at 10:41 PM, Oompa Loompa said:

Well, what are people's experience with prostrate cancer?

I know a bloke that has it and it's also spread to the hip (top of the femur), femur has gone rock hard and marrow is leaking from a hole that has eaten into the bone. Femur is slowly fracturing as the bone is rock hard.

Rated a 10 on the Gleason scale, PSA at about 85, was just under 6 eight months ago.

Just for fullness of the original post.  Passed Away Dec 2017.

So, PSA under 6 in Aug 13, Dead 4 years and 4 months later - last two months in hospital with rapid deterioration and once it got into the kidneys, that was it very quickly.

Do your tests.

Edited by Oompa Loompa
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55 minutes ago, Oompa Loompa said:

Just for fullness of the original post.  Passed Away Dec 2017.

So, PSA under 6 in Aug 13, Dead 4 years and 4 months later - last two months in hospital with rapid deterioration and once it got into the kidneys, that was it very quickly.

Do your tests.

Sorry to hear and great advice 

NSF

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On 07/02/2019 at 2:14 PM, Go Easy said:

It seems there are some varying opinions on the testing and treatment for Prostate Cancer...

The Prostate Cancer Foundation of Australia website states that 'more men die of prostate cancer than women die of breast cancer' - About 3000 a year!

After having a general check-up and blood test (prior to getting back into training) I got an urgent call back to see the Doctor due to an 'elevated total PSA level'.  The Doc didn't pull any punches and has requested that I have another round of Blood (PSA free / total ration & LFTs) & Urine (M/C/S) tests...

Six months later...  (and after a couple of visits to a Urologist).

PSA levels have gone from 5.0 in January, to 6.3, to 6.7, to 6.9 and the latest 8.0.

I've had several Blood Tests, a couple of MRI's and a Transperineal Prostate Biopsy.

The Biopsy Results have come back with two of the samples showing Cancer.

Prostate Cancer assessed as 3+3 = 6, and a 3+4 = 7 on the Gleason Scale.

Today I had CT Scans and a Total Body Bone Scan (which didn't really seem to check my total body) to asses if the Cancer has spread anywhere else in the body.  So now it's an agonising eight day wait until I see the Urologist again on the 13th August.  Best case scenario (if they don't think it's spread outside the Prostate) my Urologist is recommending Radical Prostatectomy - which at 55 is every bit as scary as it sounds.  Worse case scenario, who knows?  I'm trying not to think too much about it, but wanted to at least get this much down on paper in case I don't get back on here as I may have some other priorities that I might be dealing with.

It's hard to believe that earlier this year I was feeling invincible, was still managing to get some Age Group wins and even set an Age Group Record... now I'm feeling very vulnerable and wondering what the future holds.

Just as the others above have suggested, if you're a 50 plus male (or 40 plus with a family history) then it may be worth getting the blood test done if for no other reason than just to have a base line for future reference.  No need to respond, I just wanted to get it out there :thumbsup:.

 

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29 minutes ago, Go Easy said:

Today I had CT Scans and a Total Body Bone Scan (which didn't really seem to check my total body) to asses if the Cancer has spread anywhere else in the body.  So now it's an agonising eight day wait until I see the Urologist again on the 13th August. 

Damn, best of luck with it. I vaguely recall seeing something recently where they're now treating prostate cancers with hot water injections with success. Might be worth a google search and a question for the doc.

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Go-easy,

I have a mate who has had this a couple years ago. He doesn't mind talking to people at all about it. If you want to talk to someone who has been through this, let me know.

 

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Bloody hell mate. Sorry to hear it. 

Best of luck with everything mate. 

 

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2 hours ago, Go Easy said:

Six months later...  (and after a couple of visits to a Urologist).

PSA levels have gone from 5.0 in January, to 6.3, to 6.7, to 6.9 and the latest 8.0.

I've had several Blood Tests, a couple of MRI's and a Transperineal Prostate Biopsy.

The Biopsy Results have come back with two of the samples showing Cancer.

Prostate Cancer assessed as 3+3 = 6, and a 3+4 = 7 on the Gleason Scale.

Today I had CT Scans and a Total Body Bone Scan (which didn't really seem to check my total body) to asses if the Cancer has spread anywhere else in the body.  So now it's an agonising eight day wait until I see the Urologist again on the 13th August.  Best case scenario (if they don't think it's spread outside the Prostate) my Urologist is recommending Radical Prostatectomy - which at 55 is every bit as scary as it sounds.  Worse case scenario, who knows?  I'm trying not to think too much about it, but wanted to at least get this much down on paper in case I don't get back on here as I may have some other priorities that I might be dealing with.

It's hard to believe that earlier this year I was feeling invincible, was still managing to get some Age Group wins and even set an Age Group Record... now I'm feeling very vulnerable and wondering what the future holds.

Just as the others above have suggested, if you're a 50 plus male (or 40 plus with a family history) then it may be worth getting the blood test done if for no other reason than just to have a base line for future reference.  No need to respond, I just wanted to get it out there :thumbsup:.

 

If it’s has spread outside of prostrate, I’d snip that prostrate like there’s no tomorrow. 

Good luck with it. 

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All the best GE. You're a tough cookie, you can win this.

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Can someone fix the thread title too please? Minor detail I know.

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All the best GE.

Of all the cancers you can get, prostate is often one of the best apparently - usually very slow moving.

I'm back to my urologist on the 13th too, must be the day for it 🙄 My waterworks have been a mess for decades now & some type of prostate surgery seems to be on the horizon.

Can I ask, did you have any physical symptoms, or was it just rising PSA levels that alerted them?

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Take it easy GE. Hope things go well for you.

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Go Easy

Your story sounds familiar. I went through that process in 2005/6.  It is all about survival despite the inevitable changes that occur to your body and lifestyle.  The good news is that it shouldn't affect your athletic career in the long term based on my experience. There is a downside but you learn to live with it.  Keep a positive outlook.

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Geesus mate, wishing you all the best and give me a shout if you need anything. Hopefully you make a return and kick my ass again a few more times. 

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Hi GE, as per my previous posts I have been through it. I just ticked over 5 years all clear. Happy to answer any questions or just lend an ear if you like. I will shoot you a message with my number (happy for you to ignore it). 

Best of luck with it. 

Cheers

NSF

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On 05/08/2019 at 6:24 PM, Go Easy said:

No need to respond, I just wanted to get it out there :thumbsup:.

I wasn't chasing comments or sympathy, but your support really does make a difference.

Thanks everyone for your kind words and messages, I really am lucky with the amount of support I've got with the friends I usually run and socialise with, work colleagues, my family and I guess the family on here as well.  It's way more support than I ever deserve, and I hope that at times I've managed to provide the same sort of support to others.  To those that have reached out and offered contacts of others in similar positions, or who have been through it themselves, I may just take a few of you up on the offer.  There's so many questions that I want and need to ask, but I think I need to be in the right frame of mind to do so.  Up until now I've been feeling fairly strong and positive, but I'm currently a bit tired and broken.  I'm sure I'll be fine...  I think I just need a bit of time to take it all in.  This place really is amazing.

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7 hours ago, Go Easy said:

I wasn't chasing comments or sympathy, but your support really does make a difference.

Thanks everyone for your kind words and messages, I really am lucky with the amount of support I've got with the friends I usually run and socialise with, work colleagues, my family and I guess the family on here as well.  It's way more support than I ever deserve, and I hope that at times I've managed to provide the same sort of support to others.  To those that have reached out and offered contacts of others in similar positions, or who have been through it themselves, I may just take a few of you up on the offer.  There's so many questions that I want and need to ask, but I think I need to be in the right frame of mind to do so.  Up until now I've been feeling fairly strong and positive, but I'm currently a bit tired and broken.  I'm sure I'll be fine...  I think I just need a bit of time to take it all in.  This place really is amazing.

You are probably the most positive, supportive bloke on here. I'm sure it is all very overwhelming at this stage, but check in regularly and ask those questions when you feel you're ready.

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1 hour ago, AA7 said:

You are probably the most positive, supportive bloke on here. I'm sure it is all very overwhelming at this stage, but check in regularly and ask those questions when you feel you're ready.

Yep. 100%

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Thanks all, I'm feeling way better already, mainly due to you guys.

On 06/08/2019 at 6:51 AM, ComfortablyNumb said:

I'm back to my urologist on the 13th too, must be the day for it 🙄 My waterworks have been a mess for decades now & some type of prostate surgery seems to be on the horizon.

Can I ask, did you have any physical symptoms, or was it just rising PSA levels that alerted them?

Nope, apart from watering the horses a couple of extra times during the night I had no other symptoms at all.

The extra trips to the loo I just put down to staying well hydrated while training, and also from being a really poor sleeper and preferring to make sure my bladder was empty rather than have it be yet another thing keeping me awake at night.  I've got to get to work now, and don't get on-line during the day, but I'll PM you my number, assuming you haven't already got it, if you want to chat or ask any more questions.  Good luck with it, I hope it all goes well for you!

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On 05/08/2019 at 8:24 PM, Go Easy said:

It's hard to believe that earlier this year I was feeling invincible, was still managing to get some Age Group wins and even set an Age Group Record... now I'm feeling very vulnerable and wondering what the future holds.

GE, you will become an awesome cancer conquerer. Just like you conquered Kona back in 2012.

Get well soon.

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Good luck with the prognosis, Go Easy. You have people on here offering support which is a great thing. It's the best thing you could have right now. 

 

Men of of tranitions land!

Getting checked and having a blood test is a no brainer for any male over the age of 50. If you want to read up on this, there's plenty of information available at your local pharmacy, doctors surgery, medical centre Hospital or on the internet. There's no shame in doing it, but you'd be surprised how many guys don't. 

One place to look is the Prostate Cancer Foundation of Australia. I found out about this organisation when I participated in a charity motorbike ride in 2013 (and 2 more rides in 2015, 2016). "The Long Ride" raises funds for prostate cancer research and awareness. The ride leaves from each state in Australia, meets up at a convergence location (usually a country town) and then heads to a destination a few thousand kms away. Along the way riders stop in towns along the route and spend time talking to the locals about prostate cancer and getting checked. We raise funds in various ways as well. On these rides I've learnt more about prostate cancer than I ever imagined could exist. I've also learnt that most middle aged and older men will get the message to get checked eventually. You just have to keep talking to them. 

 

 

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54 minutes ago, Greyman said:

Getting checked and having a blood test is a no brainer for any male over the age of 50.

I had my annual blood tests on Tuesday morning. It included a PSA test. I was a bit skeptical when my GP started sending me off for these when I turned 50, but have since come to realise they have their place.

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Great work @Greyman  

I agree the most important message is just get checked (I say from 40yo). You don’t need the finger up the bum anymore, just a simple blood test. If for no other reason than to set a starting point. 

NSF

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On 05/08/2019 at 6:24 PM, Go Easy said:

Six months later...  (and after a couple of visits to a Urologist).

PSA levels have gone from 5.0 in January, to 6.3, to 6.7, to 6.9 and the latest 8.0.

I've had several Blood Tests, a couple of MRI's and a Transperineal Prostate Biopsy.

The Biopsy Results have come back with two of the samples showing Cancer.

Prostate Cancer assessed as 3+3 = 6, and a 3+4 = 7 on the Gleason Scale.

Today I had CT Scans and a Total Body Bone Scan (which didn't really seem to check my total body) to asses if the Cancer has spread anywhere else in the body.  So now it's an agonising eight day wait until I see the Urologist again on the 13th August.  Best case scenario (if they don't think it's spread outside the Prostate) my Urologist is recommending Radical Prostatectomy - which at 55 is every bit as scary as it sounds.  Worse case scenario, who knows?  I'm trying not to think too much about it, but wanted to at least get this much down on paper in case I don't get back on here as I may have some other priorities that I might be dealing with.

It's hard to believe that earlier this year I was feeling invincible, was still managing to get some Age Group wins and even set an Age Group Record... now I'm feeling very vulnerable and wondering what the future holds.

Just as the others above have suggested, if you're a 50 plus male (or 40 plus with a family history) then it may be worth getting the blood test done if for no other reason than just to have a base line for future reference.  No need to respond, I just wanted to get it out there :thumbsup:.

 

Heads up mate!! Dad mentioned that you went along to the prostate support group meeting. I was absolutely gutted hearing this from Dad, as everyone knows how bloody fit you are and a lover of life. But keep on talking and socialising. We all know that the black dog can creep on anybody, especially those who have been diagnosed with something like cancer. Hopefully it's good news from now on!!

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2 hours ago, alexholbrook said:

Heads up mate!! Dad mentioned that you went along to the prostate support group meeting. I was absolutely gutted hearing this from Dad, as everyone knows how bloody fit you are and a lover of life. But keep on talking and socialising. We all know that the black dog can creep on anybody, especially those who have been diagnosed with something like cancer. Hopefully it's good news from now on!!

Thanks mate, yes it was really good talking to your dad on Thursday night.  He and the group made me feel much better about it all.  I'm hoping it's just a co-incidence, but after being diagnosed with Cancer just over a week ago, I've managed to hurt my left knee and also my right ankle as bad as I've ever hurt either of them before.  Worse still is that I really wasn't doing anything that should have caused the injuries.  Both are bad enough for me not to be able to run or ride on them, and this together with having the full body bone scan for Cancer earlier this week is making me feel particularly vulnerable at the moment.  Up until last weekend I'd been fairly positive about it all.  Like you said, hopefully it's good news from now on.

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Best wishes, Go Easy. It's a tough thing, but you're a tough dude.

On 07/08/2019 at 5:23 AM, Greyman said:

Getting checked and having a blood test is a no brainer for any male over the age of 50.

Amen. Did the test a couple weeks ago, measured a 5 after years of being a steady 4. Doc did an MRI, came back completely clean. It's worth staying on top of it.

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3 hours ago, steve said:

Best wishes, Go Easy. It's a tough thing, but you're a tough dude.

Amen. Did the test a couple weeks ago, measured a 5 after years of being a steady 4. Doc did an MRI, came back completely clean. It's worth staying on top of it.

Apparently, it's not so much about the PSA level (up to a point), but they look for a rapid change in the level.  Mine has gone from 3s to 7s over about 10-15yrs, then back down to 4s after being put on Duodart which is supposed to help shrink an enlarged prostate & will halve your PSA level.

And don't dismiss the very unpleasant finger up the arse test either, as it can detect lumps and bumps on the prostate that should not be there & might indicate cancer.

My mates brother died from prostate cancer this year, but his PSA level was in the 100s!  And he went the 'natural medicine' route for years (probably egged on by his SIL 🙄), until it was too late to treat it with the standard treatments.

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1 hour ago, ComfortablyNumb said:

Apparently, it's not so much about the PSA level (up to a point), but they look for a rapid change in the level. 

That's right and they also take into account a natural rise in levels as you age.

PSA levels chart

Age-Specific Reference Ranges for Serum PSA
Age Range (Years) Asian Americans African Americans Caucasians
40 to 49 0 to 2.0 ng/mL 0 to 2.0 ng/mL 0 to 2.5 ng/mL
50 to 59 0 to 3.0 ng/mL 0 to 4.0 ng/mL 0 to 3.5 ng/mL
60 to 69 0 to 4.0 ng/mL 0 to 4.5 ng/mL 0 to 4.5 ng/mL
70 to 79 0 to 5.0 ng/mL 0 to 5.5 ng/mL 0 to 6.5 ng/mL

 

The "normal" PSA serum concentration remains a debate, however, for most laboratory readings, it should be less than 4.0 ng/mL. The prostate gland generally increases in size and produces more PSA with increasing age, so it is normal to have lower levels in young men and higher levels in older men. Due to these normal changes in PSA with age, the concept of age-adjusted PSA normals have been described and recommended. What is considered to be a normal PSA level also depends on ethnicity and family history of prostate cancer. Once an initial PSA has been obtained, the change in the PSA over time, the PSA velocity, plays a role in clinical decision making. It is felt that the PSA velocity over a year should be less than 0.75 ng/mL. For example, a man 50 to 59 years of age with a PSA level that is 0.5 ng/mL one year and increases to 2.5 ng/mL the following year, may be viewed as having a normal PSA level, but the rate of change in his PSA (PSA velocity) would be worrisome for an underlying prostate cancer. Lastly, as the size of the prostate gland may affect the PSA level, PSA density (PSA level divided by prostate volume) can also be a helpful number. A PSA density of 0.18 or less appears to be an optimal number.

 

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On 05/08/2019 at 6:24 PM, Go Easy said:

Best case scenario (if they don't think it's spread outside the Prostate) my Urologist is recommending Radical Prostatectomy - which at 55 is every bit as scary as it sounds.  Worse case scenario, who knows?  I'm trying not to think too much about it, but wanted to at least get this much down on paper in case I don't get back on here as I may have some other priorities that I might be dealing with.

It's hard to believe that earlier this year I was feeling invincible, was still managing to get some Age Group wins and even set an Age Group Record... now I'm feeling very vulnerable and wondering what the future holds.

After an agonising few weeks, faced with the decision of whether to go ahead with the Surgery or alternatively have some form of Radiotherapy, I will be going under the knife later this morning for a Radical Prostatectomy.

I'm still not totally confident that it's the right choice for me, but it's the option that we are going to go with.

Catch you on the 'flip side'!  :unsure:

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All the best mate. 

As you said mate it’s amazing what they can do these days. 

Trust in your decisions and their skill and we all hope for the absolute best outcome for you mate 

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