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My story so far!

User
Posted 08 Mar 2015 at 06:32

Hi all, I've monitored this site for a while whilst my diagnosis has been on going. There seems to be a lack of good sites in Aus for support!?

My story so far.

I originally had my first PSA test back in UK around 2008. This was after my Uncle had been diagnosed with prostate Cancer. Although he was on my Mothers side I still proceeded with the test and so the rollercoaster ride of this disease began.

Thankfully at the time I just had an elevated PSA, but was advised to monitor it with checks every 6 months. So from my first initial test of 2.5 it slowly increased throughout 2008/9  until I was advised by my GP to see a Urologist. He decided it would be an idea to have a biopsy examination, so in February 2009 I had my first and very painful Biopsy. This took 8 cores and thankfully they all came back negative.

Over the next couple of years my PSA elevated to 4.8 and stayed there for around a year. By this time we were in the throws of emigrating to Australia for my wife's job, so as soon as we arrived in Aus I instigated another PSA test.This was again around 4.8 and so  again the actively watch approach was undertaken. By 2013 there was no sign of it dropping so my GP advised seeing a Urologist, who tried drugs for BHP along with an ultrasound of Prostate/bladder/etc.

By now we are in to 2014 and  PSA had elevated to 5.2. Still low by all accounts and slow rising, but my Urologist believed there was an undercurrent of something going on and sent me for MRI and CT scans. Finally the MRI picked up something within the Prostate and so  my Urologist performed a TURP's with 15 cores being taken. This showed Cancer within 5 cores and a Gleason of 3+4.

Due to my age, size of Prostate and relative good health he advised that my best option would be to undertake Surgery. Now being in Aus the Public system tends not to be as accessible as the NHS ( they prefer private health to pay for most procedures) but they were undertaking trials in Robotic Prostatectomy at a Hospital within the Brisbane area  and so he managed to refer me to a Surgeon undertaking the trials on the Public Health scheme.

I was surprised after visiting the Consultant in October 2014 that I wouldn't be having surgery until after Christmas and possibly late January 2015?. This made it a very long and fretful Christmas, but finally received my surgery date in mid January. This was then cancelled twice! and eventually I underwent the procedure on Feb 25th 2015.

So to bring you upto date if I haven't bored you to tears! I am now in recovery after spending two nights in hospital. The catheter was removed within a week!! which surprised me even more than the delay on surgery! and I'm now coming to terms with pads, nappies and sitting down whilst I have a wee!!

The good news is hardly any pain from the op, apart from Gas retention in my back and ribs from the CO2!!, but I'm apprehensive about incontinence and obviously penile dysfunction. Early days yet and finding it hard to relax until I get the results of the Histology and get my first PSA test out of the way.

If anyone has been through any of this I'd like to know how your recovery went and when it's advisable to start some sort of exercise regime to get mobility back around the abdomen etc. The best I can do at the moment is Pelvic floors, but I'm dry at night so it must be working!     Good luck to all who may be on this Journey!

User
Posted 08 Mar 2015 at 23:51

Welcome Rob,

I will try not to do the Kangaroo down under jokes (I said try but I can't promise ) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif . We were a bit further down the line when diagnosed so RP wasn't an option so I can't give advice in that area but I just wanted to say Hi.

 

As Mo has said I am also glad that Georgina has found you , there's nothing like neighbours http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif (sorry I couldn't resist that one )

Seriously there are many roads on the pca journey and I am so glad that your journey is one of the roads to recovery.

Best Wishes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Mar 2015 at 06:32

Hi all, I've monitored this site for a while whilst my diagnosis has been on going. There seems to be a lack of good sites in Aus for support!?

My story so far.

I originally had my first PSA test back in UK around 2008. This was after my Uncle had been diagnosed with prostate Cancer. Although he was on my Mothers side I still proceeded with the test and so the rollercoaster ride of this disease began.

Thankfully at the time I just had an elevated PSA, but was advised to monitor it with checks every 6 months. So from my first initial test of 2.5 it slowly increased throughout 2008/9  until I was advised by my GP to see a Urologist. He decided it would be an idea to have a biopsy examination, so in February 2009 I had my first and very painful Biopsy. This took 8 cores and thankfully they all came back negative.

Over the next couple of years my PSA elevated to 4.8 and stayed there for around a year. By this time we were in the throws of emigrating to Australia for my wife's job, so as soon as we arrived in Aus I instigated another PSA test.This was again around 4.8 and so  again the actively watch approach was undertaken. By 2013 there was no sign of it dropping so my GP advised seeing a Urologist, who tried drugs for BHP along with an ultrasound of Prostate/bladder/etc.

By now we are in to 2014 and  PSA had elevated to 5.2. Still low by all accounts and slow rising, but my Urologist believed there was an undercurrent of something going on and sent me for MRI and CT scans. Finally the MRI picked up something within the Prostate and so  my Urologist performed a TURP's with 15 cores being taken. This showed Cancer within 5 cores and a Gleason of 3+4.

Due to my age, size of Prostate and relative good health he advised that my best option would be to undertake Surgery. Now being in Aus the Public system tends not to be as accessible as the NHS ( they prefer private health to pay for most procedures) but they were undertaking trials in Robotic Prostatectomy at a Hospital within the Brisbane area  and so he managed to refer me to a Surgeon undertaking the trials on the Public Health scheme.

I was surprised after visiting the Consultant in October 2014 that I wouldn't be having surgery until after Christmas and possibly late January 2015?. This made it a very long and fretful Christmas, but finally received my surgery date in mid January. This was then cancelled twice! and eventually I underwent the procedure on Feb 25th 2015.

So to bring you upto date if I haven't bored you to tears! I am now in recovery after spending two nights in hospital. The catheter was removed within a week!! which surprised me even more than the delay on surgery! and I'm now coming to terms with pads, nappies and sitting down whilst I have a wee!!

The good news is hardly any pain from the op, apart from Gas retention in my back and ribs from the CO2!!, but I'm apprehensive about incontinence and obviously penile dysfunction. Early days yet and finding it hard to relax until I get the results of the Histology and get my first PSA test out of the way.

If anyone has been through any of this I'd like to know how your recovery went and when it's advisable to start some sort of exercise regime to get mobility back around the abdomen etc. The best I can do at the moment is Pelvic floors, but I'm dry at night so it must be working!     Good luck to all who may be on this Journey!

User
Posted 08 Mar 2015 at 13:40

Hi Lowbo, I am on this site also from Aust. It is easier to access than the sites here and I have found a lot of support and information. My husband is just about at the same spot as you. He underwent a radical prostatectomy on March third. His operation was an open prostatectomy . He spent 3 nights in hospital and is now at home recovering. Today the 6th day we went for a short walk. He has a catheter in at present which we are getting used to managing apart from a couple of slip ups. It should hopefully be removed later this week when we see the Urologist . Hopefully the histology results may also be available by then. You can find more details of his dx on the profile. To access the profiles you just click on the persons site name and choose profile. All the best and it is nice to have another Aussie in a similar boat to us. Although my husband is much older he is fit and well and has recovered very well from the op. Cheers Georgina

User
Posted 08 Mar 2015 at 13:41

Hello Lowbo69 and welcome.

We haven't gone down the surgery route, my husband opted for low dose seed brachytherapy.

I know there are many men on here (well, if you have been lurking you'll know that !!) who have been/are in your situation.

I expect there will be a lot of responses for you.

Sorry I can't help but just wanted to say hello and good luck.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2015 at 14:37

Hi Lowbo69,

I had robotic assisted surgery ( da Vinci ) in June 2014... ( click on my profile for details etc )

Best advice I can give regarding recovery is to listen to your body and only do what you are comfortable with.

Despite the minimal trauma with robotic techniques your insides have still had a hammering!
Don't compare your recovery rate to others as every person is unique...

Some recover continence quickly and others are not so lucky and will take much longer.... there is no formula that will be guaranteed to speed this up..
Regular pelvic floor exercises may help improve recovery rate of continence but that is dependent on a number of factors...

If you have had nerve sparing surgery 100% or 50% there is a good chance that erectile function will return with the help of  medication to aid nerve repair etc..
Regular use of a vacuum pump will also help prevent penile atrophy...

Best Wishes for a speedy recovery
Luther 

Edited by member 08 Mar 2015 at 14:38  | Reason: Not specified

User
Posted 08 Mar 2015 at 15:38
Hi Lowbo69

welcome to this forum, nobody really wants to be here but it is a great place for advice, a general chat on how things are going and for many a place to escape to a place where we can talk about all those things that often people are afraid to open up about.

I see Georgina has already found you she is out there in Aus too.

There will be others who have been through a similar experience who will post with some ideas and tips on regaining continence, how long that can take etc. There is a lot of information on this site for regaining erectile function as well. You mentioned that you are married so I hope your wife is able to talk openly with you about how she can really make a difference in helping and supporting you with this.

Anyway what I am trying to say is ask anything you want and someone here will have ideas or advice to help

xx

Mo

User
Posted 12 Mar 2015 at 21:49

Thanks guys for your informative words. It's nice to know there are others out there in a similar situation. No matter how you explain your feelings to friends or reli's, they can't understand the feelings and doubts that sit within the space they call my brain!! The better half is a Nurse so understands very well, but certainly no sympathy!! Good luck to all of you and I'll update as I progress. I did have a stand up wee the other day!! Progress :-).
Ps. Bri, That statue is Harry Hotspur, so may well give away my team for my sins!

User
Posted 14 Mar 2015 at 09:08

Can't comment on any type of prostate removal but would recommend a web site started by an Australian, Terry Herbert, who sadly passed away not long ago. It is called YANA (you are not alone now.) It includes the stories of men from a number of countries and has mentors. The site needs to be fully explored :- http://www.yananow.org/

Barry
User
Posted 15 Mar 2015 at 07:50

Hi lowbo had my op early dec , and found walking helped me with my incontinence and i am down to one pad a day which I could leave on the next day ,I slowly built the distance to which currently walking the dogs about 6 miles each day good luck in your recovery Andy

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User
Posted 08 Mar 2015 at 13:40

Hi Lowbo, I am on this site also from Aust. It is easier to access than the sites here and I have found a lot of support and information. My husband is just about at the same spot as you. He underwent a radical prostatectomy on March third. His operation was an open prostatectomy . He spent 3 nights in hospital and is now at home recovering. Today the 6th day we went for a short walk. He has a catheter in at present which we are getting used to managing apart from a couple of slip ups. It should hopefully be removed later this week when we see the Urologist . Hopefully the histology results may also be available by then. You can find more details of his dx on the profile. To access the profiles you just click on the persons site name and choose profile. All the best and it is nice to have another Aussie in a similar boat to us. Although my husband is much older he is fit and well and has recovered very well from the op. Cheers Georgina

User
Posted 08 Mar 2015 at 13:41

Hello Lowbo69 and welcome.

We haven't gone down the surgery route, my husband opted for low dose seed brachytherapy.

I know there are many men on here (well, if you have been lurking you'll know that !!) who have been/are in your situation.

I expect there will be a lot of responses for you.

Sorry I can't help but just wanted to say hello and good luck.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2015 at 13:58

Hi there

When I first saw your avatar I thought you was from Doncaster as that looks like the statue outside my rugby club.

Anyway I had surgery but laprosopic and not by the robot. I was continent within 3 months and believe this was down to the skill of my surgeon as well as the PFE's.

Did you have nerve sparing surgery as this is important regarding erectile function? You will probably need medication to aid nerve repair if they were spared eg cialis. There are also vacuum pumps available to help penile rehabilitation.

Recovery rates vary so I would say listen to your body and build up things steadily. I was advised not to drive or push a lawnmower or similar exertion for 5 weeks post op.

I note you are having to sit to pee. Are you having trouble with your flow rate?

Ask any questions as many men on here have been through it

Bri

User
Posted 08 Mar 2015 at 14:37

Hi Lowbo69,

I had robotic assisted surgery ( da Vinci ) in June 2014... ( click on my profile for details etc )

Best advice I can give regarding recovery is to listen to your body and only do what you are comfortable with.

Despite the minimal trauma with robotic techniques your insides have still had a hammering!
Don't compare your recovery rate to others as every person is unique...

Some recover continence quickly and others are not so lucky and will take much longer.... there is no formula that will be guaranteed to speed this up..
Regular pelvic floor exercises may help improve recovery rate of continence but that is dependent on a number of factors...

If you have had nerve sparing surgery 100% or 50% there is a good chance that erectile function will return with the help of  medication to aid nerve repair etc..
Regular use of a vacuum pump will also help prevent penile atrophy...

Best Wishes for a speedy recovery
Luther 

Edited by member 08 Mar 2015 at 14:38  | Reason: Not specified

User
Posted 08 Mar 2015 at 15:38
Hi Lowbo69

welcome to this forum, nobody really wants to be here but it is a great place for advice, a general chat on how things are going and for many a place to escape to a place where we can talk about all those things that often people are afraid to open up about.

I see Georgina has already found you she is out there in Aus too.

There will be others who have been through a similar experience who will post with some ideas and tips on regaining continence, how long that can take etc. There is a lot of information on this site for regaining erectile function as well. You mentioned that you are married so I hope your wife is able to talk openly with you about how she can really make a difference in helping and supporting you with this.

Anyway what I am trying to say is ask anything you want and someone here will have ideas or advice to help

xx

Mo

User
Posted 08 Mar 2015 at 23:51

Welcome Rob,

I will try not to do the Kangaroo down under jokes (I said try but I can't promise ) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif . We were a bit further down the line when diagnosed so RP wasn't an option so I can't give advice in that area but I just wanted to say Hi.

 

As Mo has said I am also glad that Georgina has found you , there's nothing like neighbours http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif (sorry I couldn't resist that one )

Seriously there are many roads on the pca journey and I am so glad that your journey is one of the roads to recovery.

Best Wishes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Mar 2015 at 21:49

Thanks guys for your informative words. It's nice to know there are others out there in a similar situation. No matter how you explain your feelings to friends or reli's, they can't understand the feelings and doubts that sit within the space they call my brain!! The better half is a Nurse so understands very well, but certainly no sympathy!! Good luck to all of you and I'll update as I progress. I did have a stand up wee the other day!! Progress :-).
Ps. Bri, That statue is Harry Hotspur, so may well give away my team for my sins!

User
Posted 14 Mar 2015 at 09:08

Can't comment on any type of prostate removal but would recommend a web site started by an Australian, Terry Herbert, who sadly passed away not long ago. It is called YANA (you are not alone now.) It includes the stories of men from a number of countries and has mentors. The site needs to be fully explored :- http://www.yananow.org/

Barry
User
Posted 15 Mar 2015 at 07:50

Hi lowbo had my op early dec , and found walking helped me with my incontinence and i am down to one pad a day which I could leave on the next day ,I slowly built the distance to which currently walking the dogs about 6 miles each day good luck in your recovery Andy

 
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