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Old 24-03-2020, 02:58 PM
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Nikolas (Nik)
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Anyone here a Prostate Cancer survivor?

Asking this as I have had surgery last week to remove mine due to stage 2 Cancer (got in just before the madness)

Pathology results came back and the cancer was contained within the prostate so for all intents and purposes I am now Cancer free, however this also means years of blood tests to make sure.
Recovery is a pain in more ways than one, thankfully the surgeon preserved my nerves so will eventually get back most if not all my pre-surgery function.
Moral of the story is it pays to do the PSA tests guys do not worry about finger in butt etc, it's a necessary evil and WILL save your life.
I'm in the young category as well at 55 so start those tests even earlier.
Rant mode /on
The government and private health insurers does not see Robotic surgery as a "legit" form of surgery (ie they consider it elective) even if it does an incredible job of less intrusion, less infection and quicker recovery time so they pass on more or less the full cost which in my case is $9k others may be charged more.
Let's hope whoever is in power prioritises health care over some other garbage they prioritise, seriously you would think they will learn from this CoVid 19 issue.


Anyway thought I'd share I hope that we will have clearer skie so that when I remove the catheter and am able to lift more than 4 kg's I can start up my astrophotography again I have quite a lot of leave to do so.
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Old 24-03-2020, 03:01 PM
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Good to hear everything went well. Best wishes for a speedy recovery.

Best
JA
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Old 24-03-2020, 03:23 PM
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PCH (Paul)
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My dad had his prostate removed many years ago for the same reason, and has had a full and worry free life (in that regard) ever since 🙏😄
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Old 24-03-2020, 03:36 PM
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Nikolas (Nik)
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Quote:
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Good to hear everything went well. Best wishes for a speedy recovery.

Best
JA

Thanks





Quote:
Originally Posted by PCH View Post
My dad had his prostate removed many years ago for the same reason, and has had a full and worry free life (in that regard) ever since 🙏😄

Thanks that's good to know, it's always in the back of your mind that a little bit fell out and is now working out a way to make life miserable again.
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Old 24-03-2020, 04:25 PM
JohnF (John)
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I have had prostrate cancer for years. Just finished my second round of hormone therapy and PSA was down from 57 to 0.57. Others in the Tweed Heads Prostrate support group also have had great success with the Hormone Therapy -- as long as you can put up with hot flushes, man boobs, etc. But I chose that over surgery. Also have good diet, don't drink, and try to get exercise in the sun and fresh air.
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Old 24-03-2020, 04:44 PM
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Nikolas (Nik)
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I have had prostrate cancer for years. Just finished my second round of hormone therapy and PSA was down from 57 to 0.57. Others in the Tweed Heads Prostrate support group also have had great success with the Hormone Therapy -- as long as you can put up with hot flushes, man boobs, etc. But I chose that over surgery. Also have good diet, don't drink, and try to get exercise in the sun and fresh air.

In my case the threat of it leaving the prostate was enough for me, I really wasn't keen on hormone therapy as I'm too active and too young and at my age surgical removal is a better option for stage 2 as recovery has a better outcome function wise.

57 psa????? wow!
Hope you are travelling well
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Old 24-03-2020, 06:35 PM
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Shiraz (Ray)
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best wishes Nick. Had mine removed at about your age and have been clear for well over a decade....the odds are very good for stage 2. Cheers Ray
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Old 24-03-2020, 08:11 PM
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The Mekon (John Briggs)
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Nik,

I had mine removed in 2014 by the robot. My out of pocket was $20K so perhaps costs are reducing. Getting the "all clear at the margins" is very re-assuring and I have had no problems since. Now 65 and other than the usual after effects, as healthy as a horse.
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Old 24-03-2020, 08:30 PM
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Nikolas (Nik)
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Good to hear these stories guys very reassuring for me
Cheers
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Old 24-03-2020, 09:32 PM
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erick (Eric)
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Last October for me, Nik. Robotic. Out of pocket $s - ginormous! Even with top health cover. But wouldn't have gone with any other option after my research and given my situation after all the tests (including the deafening MRI!). Pathology - all clear at the margins. Two post-op PSA results now, both below detection. Great news. Don't try rush your recovery - having catheter out is a joy, but see how you progress from there. Get urological physiotherapy and do exactly what you are told. Some things resolve quickly, others slowly. I'm five months post-op and figure it'll be a further 7 months before I know if full recovery is a prospect. We're in a fortunate club - prostate cancer survivors thanks to early detection and quality modern medicine with skilled robotic surgeons. Eric
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Old 24-03-2020, 09:49 PM
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Nikolas (Nik)
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Great news Eric, I'm not looking forward to the catheter removal that's for sure.
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Old 25-03-2020, 09:02 AM
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The Mekon (John Briggs)
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Great news Eric, I'm not looking forward to the catheter removal that's for sure.
Removal of the catheter is of course painless. While it was in I found great benefit in the fact I could drink as much as I wanted without having to rush off to the toilet! Once it was out I realised I had no "feeling" at all in my bladder muscles. I suggest you buy a supply of the special incontinence pants now. I notice the supermarket shelves are getting low on pants and pads. It took me a couple of months to regain good bladder control, so don't worry in the first few weeks. I still wear very light pads as heavy lifting, water gurgling etc can make me leak the tiniest amount (I call them 10 cent pieces) Most of the time I dispose of a fully dry pad at the end of a day.
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Old 25-03-2020, 11:02 AM
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Nikolas (Nik)
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Thanks John good to know.

I will ask at the hospital when I get it removed for extra supplies if possible as there may not be enough on the shelves.
The next 12 weeks are gonna be interesting getting full function back, lucky I did a lot of the muscle physio pre-op.
Cheers
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Old 17-06-2021, 09:30 AM
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So... I've ummed & ahhed about posting here but, I've decided it's too important a subject to not say something.

In October of last year I was diagnosed with prostate cancer at the age of 53. My Gleeson score showed low grade (3+3) but, high volume with 5/6 of my prostate affected. Thus began the process of coming to terms with it & deciding which of the treatment options suited me best. Fortunately for me, I had time... there was urgency to act but, not in the immediate term so I had time to prepare both physically & mentally, this is not always the case.

Wednesday last week I underwent robotic surgery to have my prostate removed & yesterday, my catheter was removed & I received my post op pathology report...

Who knew a simple phrase such as 'clear at the margins' could make one so happy... as an additional bonus, my bladder function is exceptionally good with only very minor leakage... Awesome!! Effectively this means cancer free... cured... sure, I have to have a confirming blood test in 3 months time but, I'd have to be really unlucky...

Now, the important stuff:

Approximately 3,200 or so men DIE from prostate cancer in Australia each year!! It is second only to lung cancer as the most common cause of DEATH in Australian men...

Now let that sink in for a minute!!

So:

1. If you are over 45, please go and get a simple PSA blood test... all of you are at a 1 in 6 risk of having prostate cancer!

2. If you are over 40, have a history of prostate cancer in your family, your risk is higher at 1 in 3... please go and get a simple PSA blood test!

3. If you have increased urinary frequency, please go and get a simple PSA blood test!!

It's not the be all & end all of testing but, it's simple & generally very effective at least determining if something untoward is going on in your prostate & IT MIGHT JUST SAVE YOUR LIFE!!

Finally, being diagnosed with cancer is an extremely confronting & life changing event... but, you do not have to suffer in silence... reach out, seek help from family, friends & most importantly to someone who has already travelled the path on which you are starting out... it's so important, I can't stress this enough.

I was blessed to have an awesome treatment team & some truly wonderful people in my life who helped me navigate the roller coaster of emotions that is a cancer diagnosis... some of those people are on this forum who I have formed friendships with over the years despite, not necessarily meeting them in person... You know who you are, I won't embarrass you... But, thankyou so much for your support.

I also reached out to Nikolas (Nik) the OP of this thread, his response was nothing short of amazing... his generosity in sharing a very personal experience was both humbling & uplifting... He helped in ways no-one who hasn't been through it can... you need to find someone, preferably in your age bracket who has already travelled this road, it's vital, I can't emphasise this enough..

Thankyou Nikolas for your support in the journey so far, we both have a ways to travel but, your counsel & insight into your own journey has been absolutely invaluable. I am truly grateful... words alone cannot express my gratitude!

So, three things... if you fit one of the categories I listed at the start, go get tested... preach to all your male friends about the importance of getting tested... & if you are suffering from prostate cancer now or in the future & need the counsel of a fellow traveller (and you will), reach out, please, just reach out!

It's my turn now to pay it forward, so if your out there, looking for someone who's already been there, please flip me a PM, I can't fix it for you, I can't make decisions for you but, I MIGHT BE ABLE TO HELP YOU NAVIGATE THIS JOURNEY in the same way Nikolas did for me!!

My journey is not over, in reality, it will never be over but, I'm alive, I'm here & I AM A PROSTATE CANCER SURVIVOR!!

Thanks for your indulgence...

Postscript: For those of you who have had military service in Australia (& possibly Commonwealth) DVA will cover treatment if you are diagnosed with any form of Cancer... I hate dealing with DVA but, in this case, it took them less than a week from submitting my form to Non-liability Health Cover section, to receive approval for treatment... this meant my out of pocket has been ZERO!! It's a small silver lining in the scheme of things but, it is a silver lining nonetheless!!

Last edited by Outcast; 17-06-2021 at 09:48 AM.
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Old 17-06-2021, 10:09 AM
Hans Tucker (Hans)
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Anyone had to have a Prostate Biopsy? Is it a quick day procedure or is a hospital recovery required?
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Old 17-06-2021, 10:10 AM
JohnF (John)
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I am controlling my prostrate cancer, w by Hormone therapy, Lucrin injection once every 4 months, plus Cosudex tablets every day.

Suggest you should find a nearby Prostrate support group and go to their meeting if possible. And there are many other treatment options which support groups could help you advise about.

Many in our Tweed Heads SuppOrt group have found Hormone not so bad, but you loose Sex drive, grow man boobs, and caN LOOSE MUSCLE mASS IF YOU DONT EXCERCISE.
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Old 17-06-2021, 10:25 AM
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Quote:
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Anyone had to have a Prostate Biopsy? Is it a quick day procedure or is a hospital recovery required?
Hi Hans,

In my experience it was quick (about a 30min procedure) & day surgery only. I found it pretty much a painless experience, very, very mild discomfort, nothing more.

Cheers
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Old 17-06-2021, 10:29 AM
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Outcast (Carlton)
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Quote:
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I am controlling my prostrate cancer, w by Hormone therapy, Lucrin injection once every 4 months, plus Cosudex tablets every day.

Suggest you should find a nearby Prostrate support group and go to their meeting if possible. And there are many other treatment options which support groups could help you advise about.

Many in our Tweed Heads SuppOrt group have found Hormone not so bad, but you loose Sex drive, grow man boobs, and caN LOOSE MUSCLE mASS IF YOU DONT EXCERCISE.
Surgery is absolutely not the only option & each should choose the option that suits them best... there is no 'correct' option, only what you feel is best for you....

I agree, you should try and find a local support group if you can.. in my case, my local group had shutdown due to Covid & also, the average age of those involved was significantly above mine... I believe it's really important to find someone in your age bracket, everyones journey, motivation to particular treatment options is different, as it should be but, finding someone in your age bracket means they are able to relate better to your situation... none of us should ever push a particular treatment option... it needs to be your choice...

As John states above, he chose hormone replacement & radiation therapy, that was the choice he felt was best for him...
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Old 17-06-2021, 10:43 AM
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What a great thread. It is wonderful to see what is going on here as so often, once at least in the past, men just did not talk about these things...
Alex
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Old 17-06-2021, 10:54 AM
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Couldn't agree more Alex & sadly, I think it's still the case that not enough men openly talk about men's health issues.

I've been quite stunned at the things I've learned along the way & genuinely surprised at the number of men I know who didn't even know what a prostate was.

The lack of awareness out in the male community is astounding & with a lack of awareness campaigns means that those of us willing to speak of our experience, must do so...
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