Anyone here a Prostate Cancer survivor?

[Nikolas]

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.

[JA]

Good to hear everything went well. Best wishes for a speedy recovery.

Best
JA

[PCH]

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 🙏😄

[Nikolas]

Thanks








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.

[JohnF]

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.

[Nikolas]

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

[Shiraz]

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

[The Mekon]

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.

[Nikolas]

Good to hear these stories guys very reassuring for me
Cheers

[erick]

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 :thumbsup:

[Nikolas]

Great news Eric, I'm not looking forward to the catheter removal that's for sure.

[The Mekon]

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.

[Nikolas]

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

[Outcast]

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... :D

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!!

[Hans Tucker]

Anyone had to have a Prostate Biopsy? Is it a quick day procedure or is a hospital recovery required?

[JohnF]

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.

[Outcast]

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

[Outcast]

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... :thumbsup:

[xelasnave]

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

[Outcast]

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...

[Finbar]

Yes. Diagnosed last year (2020), aged 58. Family history suggested prostate cancer was a matter of when, not if; the GP had abandoned the indignity of the largely useless prod, which even late in my process indicated no more than age-related enlargement.

No symptoms, but a jump in PSA led to urologist in May 2020; ultrasound and MRI showed nothing but a very minor looking feature that may have been nothing. Next PSA still too high, so biopsy in October: cancer in all 6 sectors, with old Gleeson scale 7 heading toward 8. The whole thing was going off and action was needed. Preparatory pelvic floor exercises commenced immediately. PET scan revealed no visible escape. Talked with oncologist too, but taking all factors into consideration the team and I agreed November that surgery was my best option; robotic assisted. The extent within the prostate meant nerve saving could not be guaranteed; I'm celibate, no one else to please, so get on with it, said I. Surgery mid-December, with the most serious disappointment of not being able to witness Jupiter and Saturn passing as planned for 2 years! Damn, that hurt.

For a few weeks the telescopes were too heavy to set up, limiting star gazing to binoculars on the all too rare clear nights. Six months later, recovery excellent, PSA next to 0, but, without surprise, no return of former function. Well, c'est le vie, living being the operative word, and now enjoying the newly discovered joys of binoviewing.

[Nikolas]

So long as you are living mate then function can still return and there are new nerve grafts that are being experimented with promising results.

[Nikolas]

My biopsy was a day procedure no issues apart from discomfort and some bleeding in ejaculate which cleared up.

[Outcast]

So, had my first PSA test post surgery a couple of weeks ago... great news... undetectable... so, cancer free...

Got some more artwork to celebrate & also to hopefully start conversations & raise awareness. Right wrist so it sparks a conversation at handshake.

Cheers

[Nikolas]

Nice artwork mate that will be a conversation starter for sure, good news.

[RB]

So good to see you post the update buddy !!
Great conversation starter mate.
My dad is a little better too, of course he is 87, and as you know was in hospital recently for a different matter but he's had ongoing treatment after his prostate opp.

A good reminder for all the guys to get their prostate checked regularly and also October is Breast Cancer awareness month, so girls, please get checked too.

Kindest Regards
Andrew

:thumbsup:

[xelasnave]

Great news all round... excellent.
Alex

[Nikolas]

Actually just gone through the whole thread and realised I haven't posted an update. 19 month post op all tests have been undetectable so that's absolutely reassuring. Minimal side effects now, Most things work now with chemical help (blue pills) and that will improve further in the next year as the nerves come back online.
6 month blood tests now but my doctor says that i am cancer free so hopefully it stays that way. Wishing everyone on their journey the best of luck it's been quite a ride.....

[GTB_an_Owl]

have had 2 meetings with mr.C
lymph glands under left arm and prostate

no chemo - just cut em out thank you
have lymphedema in left arm - small price to pay
prostate was regarded a 7 from biopsy - manual surgery to remove - no chemo needed - no reason to have bits re-connected - past that stage in life - too old
doctor was right in saying "contintence return in 3 months"
he was right within a couple of days

without a good local GP and regular visits (every three months - i was lucky to have the one GP for over 35 years and the 4 visits a year more so in the last 15 years) one or both of the above would have claimed me by now

and just for the record, i just returned home from a colonoscopy/endoscopy check at north gosford private hospital this afternoon (my third over the last 8 years)

and of course private health insurance helps - no delay when action needed

geoff

[taminga16]

Yes, I am currently clear and not due for another review for twelve months.
Greg.

[JohnF]

Have had prostrate cancer for well over a decade. It is a metastatic cancer. On Hormone therapy, PSA currently just 1.8, tested only two weeks ago. Others on Hormone therapy for many years. Loose your sex drive, etc. on that therapy, but next month I turn 73 and will have outlived my Dad who died at 72 -- not from Prostrate Cancer.

[erick]

Two years post surgery.

1. Cancer - PSA remains not detectable. Might be all clear :cool:
2. Incontinence - minor, but great to be able to empty bladder quickly :thumbsup:
3. Unmentionable... Look at this Tim Conway (https://www.youtube.com/watch?v=JbhsbW_AfDQ) Enjoy the whole video or watch from 34:00 or particularly from 36:40 :D

[Finbar]

Now 1 year, 3 days post surgery, 4th PSA test shows undetectable levels. Fortunately the Covid crisis caused no delay in detection, diagnosis and action, otherwise in my case was heading very quickly into really bad territory.

No incontinence problems at all; donated preparatory supply of pads to local nursing home. I think from reading back through the thread that Outcast (Carlton) and I were in the same excellent hands or team.

More of a surprise, on return to gym I managed to get back to under 4min 1k run in shorter time than after previous breaks. Suspected the little blue pill was helping, but even months after stopping taking it (due to irritating nasal congestion side effect for no detectable gain) have continued shaving seconds to 3:39mins. Not what I could do in my youth, but not bad at my age and shan’t push it.

Worried for guys whose detection and treatment has been disrupted by Covid.
Take care, all,
Barry

[Nikolas]

Great news Barry
I had my first real christmas binge yesterday and happy to say despite copious amounts of alcohol, bladdwr control was as it was prior to surgery so at lest now I can imbibe in the future