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Chris J's Journey

User
Posted 24 Aug 2016 at 17:15

CJ

http://community.prostatecanceruk.org/posts/t10794-Chris-J-s-Journey

Copy and paste the the above link into your personnel profile, if it works as a link great, if not it is still a reminder of your conversation and people reading your profile can use it to read your relevant conversations.

Good news on the PSA hope it continues, don't give up on the ED, there is still time. 

Thanks Chris

User
Posted 24 Aug 2016 at 17:29

Thanks for the update Chris and Pleased to hear your PSA is staying low 👍🏽

The only time you should look back is to see how far you have come
User
Posted 24 Aug 2016 at 18:20
Great news, Chris.

Celebrate.

Steve

User
Posted 24 Aug 2016 at 20:16

Good news Chris take care Andy

User
Posted 24 Aug 2016 at 21:11

A mixed bag and an anxious few weeks to come, I think. On the up side, you at least can get an erection with assistance. I wonder sometimes if it would be better for surgeons to be really open with men and say "after the op, you may not be able to get an erection without help, but 90% of men can get an erection using chemical or mechanical means by 2 years post op." At least then there would be no unrealistic expectations or disappointment. I suspect there would be an awful lot more men opting for RT or brachy if they knew the reality.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Aug 2016 at 21:30
Chris

great news on the PSA , I hope you start to feel the benefits of coming off HT and onto prescribed 5mg Cialis daily. It would be soooo good if your PSA took a very long time to increase to 3-5

you could be like George H and others who have a long and successful experience with intermittent HT no?

Anyway for the here and now things are sounding positive and I am really happy for you

my very best wishes and a virtual hug

xxx

Mo

User
Posted 24 Aug 2016 at 22:48

Chris,

This is your "GOOD NEWS", and I hope you enjoy it, and you and your family enjoy it.

Chuffed to bits for you. :-)

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 24 Aug 2016 at 23:23

Originally Posted by: Online Community Member

A mixed bag and an anxious few weeks to come, I think. On the up side, you at least can get an erection with assistance. I wonder sometimes if it would be better for surgeons to be really open with men and say "after the op, you may not be able to get an erection without help, but 90% of men can get an erection using chemical or mechanical means by 2 years post op." At least then there would be no unrealistic expectations or disappointment. I suspect there would be an awful lot more men opting for RT or brachy if they knew the reality.

 

Hi Lyn, anyone reading your post may understand from it, that only 10% of men who opt for surgery recover any form of natural erectile function afterwards.  Is that what you meant?  Is that the case?

And for those 90% who need help and do get erections, is it really the case that for THAT other 10%, they will never ever achieve erections even if they have the pump and third testicle ball shared squeezie thing installed?  I can not remember what it is called, sorry.

I don't know about what every other man who opted for surgery was told about POTENTIAL consequences, but my surgeon told me very clearly the following:

1.  I might die on the table.  He was apparently very content that this was a very low possibility.  I was not content mind you, his "low possibility" was way way too high for my liking. ;-) 

 

2.  I might lose all bowel control forever and be pooing myself uncontrollably for the rest of my life.*

 

3.  I might lose all bladder control forever and be peeing uncontrollably for the rest of my life.*

 

4.  I might never ever have a natural erection again, ever.  He did not tell me the there were chemical and mechanical means of achieving an erection though.  So, I believed that NO MORE erections, EVER, was a possibility.*

 

And I was very clear with him, if in any doubt cut out anything and everything you do not like the look of.   I did not want him apologising to me for a recurrence because he thought he was doing me some sort of misguided favour by leaving some bits in that were going to kill me later!   

 

* and despite all those possibilities, I wanted it out and opted for surgery.  

I was offered Brachytherapy.  I was offered HIFU.  I was offered the seed implants, is that Brachy?  

 

I was offered open surgery by my local NHS Trust surgeon who, on learning that I had opted to go beyond my Local NHS Trust and have the Robot at Reading, told me that if he could have offered me the Robot, he would have but they did not have one, so he came to Reading on his day off to witness my operation performed by a friend of his using the Robot.  

 

As it happens, I only suffered 1 of the 4 potential side effects, Number 1, as I did not die on the table.

I have total bowel control, I have total bladder control, and I have natural erections, rather too frequently for my partners liking!

Surgery is not all bad for anyone or everyone.  

And no one knows what the outcome will be, until you have whatever treatment option you decide on.  

So sadly, we only have one chance and one choice.

Have a good weekend all.

dave

 

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 25 Aug 2016 at 00:42

Sorry CB, I didn't word it quite right. I should have said 90% of men that have nerve-sparing RP will be able to get an erection naturally or by chemical / mechanical means at the 2 year mark. In actual fact, the NHS data is that 10 - 15% of men who have nerve-sparing will never have an erection again, even with help. As far as I know, they do not publish data for the number of men regaining natural erections.

You and John were both fortunate to have surgeons who were honest and upfront about the possible side effects but have you not noticed that recently we seem to have had a number of newer post-operatives that have been ill-prepared and sometimes shocked by the side effects, even in the early days? It seems to me that there must be some surgeons out there who do not explain that incontinence may be highly likely in the first days and weeks after the catheter is removed - we regularly have posts from men reeling that they are not dry a couple of weeks later, or 6 weeks down the line are worried that they haven't had an erection yet. We have also had a member recently that had no idea that he wouldn't ejaculate any more. Maybe it all depends on the hospital - John was given booklets at the diagnosis appointment detailing the different treatments and their possible side effects.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Aug 2016 at 01:36

Aha,

I understand, thank you.

Have a good weekend, NO, have a GREAT weekend!

Dave

Edited by member 25 Aug 2016 at 08:20  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 25 Aug 2016 at 07:11
Great news Chris 😊 nice to read after so many lows for you. Take care jx
User
Posted 07 Sep 2016 at 13:27

So guys a big update. More to keep my record up to date rather than bore you all to death. I've had a lot of cancelled ED appts recently so I actually texted my original Uro surgeon and asked to see him privately. Low and behold two days later I got an 8.50 NHS appt. I've had great service.
My surgeon is a ' get all that cancer out and constantly fight it ' kind of guy. My Onco understands my mental fragility and caters around that.
As for my cancer he was upset I didn't do the RT. For the first time we had a full post Surgery review of Histology. Some seminal vesicle left behind but only to protect the nerves. However I did have a positive margin at the bladder area so I am highly likely with a G9T4 N1 cancer to get local recurrence which will need dealing with at some point. But he agreed my post op PSA profile suggested body Mets and so he understood my reasons for turning it down at this time. He suspects when I'm next scanned with CholinePET that they will find further lymph spread ( which can be operated ) or bone spread ( which if small tumours can be RT individually ). But he feels if I go for treatments , I may as well have full prostate bed RT aswell.
As for ED we tentatively agreed I could stay on Cialis 5mg but only as it is giving me happiness. He insists still that latest research says it will not give natural recovery any more than just a pump alone. I explained recent atrophy and peyronies and laughably he said that can't be always linked to cancer and surgery. It could be ' just bad luck '. Or coincidence ? WTF haha. He wants me to take some pictures when I'm next erect , to take to the ED clinic next visit. God almighty the iCloud could send them anywhere. I'm also going to try the new super injection that gives less pain when I visit as I'd be a good candidate and may need to use it if future castration HT renders Cialis useless.
Was good to see him and El and I were happy with talk , but for now we will stick with gentle Onco and his plans.
Best wishes all x

Edited by member 07 Sep 2016 at 13:43  | Reason: Not specified

User
Posted 07 Sep 2016 at 19:19

Chris,

You are amazing, keep at it young man, best regards to you and El

x

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 08 Sep 2016 at 00:00

More or less John's onco's words Chris - if there are a few small bone mets they can be zapped individually and lymph nodes can be removed surgically. The affected part of his bladder had been removed during the RP though and he has already had the salvage RT to prostate bed & bladder neck so I am thinking that perhaps you will be persuaded to have the RT if the PET scan comes back with good news?

John's PSA result tomorrow & onco next week :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Sep 2016 at 07:22
CJ

Thanks for the update it is useful to hear people's journeys and to hear how our friends are getting on. Some tough choices to be made but at least we are still here to make them and I wish you well.

I showed my consultant a picture on my phone of blood dripping out of my penis, he said "it's a good job you don't have to go to Boots to pick the photos, you would get locked up".

Take care.

Thanks Chris

User
Posted 08 Sep 2016 at 08:48

Thanks for the update Chris
You are at true fighter and the support you offer to others is appreciated,

Viv

The only time you should look back is to see how far you have come
User
Posted 08 Sep 2016 at 13:35
Hi Chris thanks for the update glad it was a positive meeting for you and E. Still looking at those websites 😊 jxx
User
Posted 11 Oct 2016 at 10:07

Hi LynEyre

Just read your post with interest, in this day and age every man should be given all the information with regards what the side effects would be from every treatment route.

My consultant gave me all the information without missing anything out and highlighted the pros and cons of each, although a lot more cons than pros. All the information is out there via the proper websites like this one so a wee bit of self research is a must. I went into my surgery with the knowledge that nothing was going to be spared and that RT would be required afterwards. The only downside was the fact that I had to go on HT implants, really wanted to stay away from these but as my consultant stated they are trying to throw everything at the PCa to get rid of it.

I would highly recommend anyone to get as much information prior to setting out on their journey so they know all that matters plus always take someone with them as the information can get lost pretty easily. There's no denying its a long journey for everyone. I know some men may want to bury their head in the sand but I wanted to know all I could about PCa and I would urge all men to do the same.

My biggest problem at the moment is the ED side of things been on 5mg Cialis topped up by 20mg but not much movement at all, which was to be expected due to the non nerve sparing surgery. Getting a pump delivered today so feeling like a kid in a sweetie shop so hopefully xmas will come a wee bit early. My ED nurse has been fantastic and the next step will be an injection if pump is not successful but my nurse is confident something will happen. I also have RT to look forward too from the 18th Oct.

The only thing I found throughout is that sometimes you have to take matters into your own hands and pester some people via phone calls etc to get their attention, as I believe if I didn't contact the ED nurse direct then I would still be waiting.

Take care all.

Onwards and upwards.

Sandy

User
Posted 11 Oct 2016 at 10:18

Update only.
Six weeks off the Bicalutamide HT and PSA up from 0.13 to 0.45.
So the doubling time is 2.4 weeks.
So wherever my Mets are , they're not happy bunnies at all. Could just be a mini flare up , but to be honest the sooner I have the scan the better in my opinion.

User
Posted 11 Oct 2016 at 12:49

Hi Chris,

Thanks for the update.

Hopefully, it may be an effect of coming off the Bicalutamide HT.  I've been warned that my PSA will probably rise now I've stopped my HT but hopefully this should come down again to what will be my normal level.  It's sometimes the flare effect of finishing HT treatment.

Worth checking out.

All the Best,

Steve

 
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