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User
Posted 20 Jul 2016 at 23:42
Hi Viv... I've just been reading through this thread and u are going through same as me with my dad, he was diagnosed 3 months ago, opted for surgery and has been given the all clear last week!! Your dad will have ups n downs, but hopefully he will come thro the other end feeling blessed as we do!! If U are interested, Click on my profile and read my bio.... U will see how similar our journey is! 😊
User
Posted 21 Jul 2016 at 18:36

Hi Colleen
It's amazing how similar our dads journeys have been so far !! Its fantastic to hear your dad has got the all clear :-) I'm hoping my dad will too when he recieves his pathology in 8 weeks time, my dad is Gleason 4+3 but we are praying that everything comes back clear, it's so worrying for us daughters and wives to see our loved ones go through this awful disease,
Best wishes to you and your family

Viv x

The only time you should look back is to see how far you have come
User
Posted 21 Jul 2016 at 20:57
Yes my dad was a Gleason 7 also, but 3+4.

It was very difficult times after getting the diagnosis, there were lots of tears between me, mum and my sister, but we kept strong for dad. The waiting and not knowing was the worst.... Waiting 2 weeks for the MRI results seemed like forever! Now it just all seemed like a nightmare that we've woken up from!! My dad is still not as strong as he was, a little tender in scar tissue on side, but otherwise living life like before. I shall follow your updates and wishing your dad a speedy recovery 😊 X

Edited by member 21 Jul 2016 at 20:57  | Reason: Not specified

User
Posted 21 Jul 2016 at 22:38

My Gleason is also 3+4 but only one one side; the other side is benign. T2 at diagnosis.

I'm now awaiting the date for pre-op assessment and op date and expecting the letter any day now. Not looking forward to it and I really hope that they can do the nerve-sparing surgery; at least they should be able to save one side, else I'm going to have to live off my memories, lol.

Take care and best wishes to all of you. Must be hard for the families. You are in my thoughts.

Glen

User
Posted 21 Jul 2016 at 23:40

Hi Glen,
some people have full nerve-sparing but never have an erection again. Others supposedly have all nerves removed but do regain some sexual function. It seems to be as much about how bruised the nerve bundles are, how much was cauterised during the op - and a bit of luck thrown in. My OH had most of one side spared and has recovered his erectile function but it took 4 years of pump, every tablet going and injections. He still has some ED but now emotional rather than physical.

Enjoy these weeks before the op and do plenty of what couples do, just in case!

Edited by member 24 Jul 2016 at 20:43  | Reason: Not specified

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

User
Posted 24 Jul 2016 at 17:15

Please, if there's anyone watching, let me have some luck, lol!

 

User
Posted 02 Aug 2016 at 13:43

Hi
My dad is 3 weeks post op and is at hospital today for to hopefully have his catheter removed, he had to go back to hospital last week after having it removed but was in such pain they put it back in, I was just wondering if this is normal ? He's also on his second course of antibiotics as his wound is infected, I know these are pretty minor setbacks in the grand scheme of having cancer but just wish he was starting to feel a little better
Viv X

The only time you should look back is to see how far you have come
User
Posted 02 Aug 2016 at 14:24

Hi Viv
I'm not sure many have had re-catheterisstion so quickly. But wound infections are quite common. I had the 5 hole laprascopic operation and the drain hole got infected quite badly. Redness spreading all over my hip and abdomen. But anti B's sorted it. Hope it all goes well today.

User
Posted 02 Aug 2016 at 14:53
Hi Chris

Yeah I have been reading through the profile of others on here and hadn't come across being re Catherised so soon, my dad had been passing water whilst in hospital once catheter was removed but by the time he got home he was in terrible pain and had to go back,The wounds look so sore and I'm sure like you say the antibiotics will do the trick,

Sounds like you had a real nasty infection,

Thank

Viv X

Edited by member 02 Aug 2016 at 14:54  | Reason: Not specified

The only time you should look back is to see how far you have come
User
Posted 14 Aug 2016 at 10:24

A little update on my dad post surgery, Dad had a phone call on Thursday evening from his consultant to let him know he had no lymph node involvement and had clear surgical margins, ( how nice of him to ring personally when I'm sure he is a very busy man) We were so chuffed to hear this πŸ˜„
Dad has his 8 week PSA in a couple of weeks time which will hopefully be undetectable, fingers crossed !!

The journey continues .....

The only time you should look back is to see how far you have come
User
Posted 14 Aug 2016 at 11:27
V

Great news about the margins and hope the PSA is nice and low.

Thanks Chris

User
Posted 14 Aug 2016 at 12:54
Great news Viv!! πŸ˜€
User
Posted 14 Aug 2016 at 16:57
Hi Viv

Great news. Fingers crossed for Dad's PSA result.

Kevan

User
Posted 17 Aug 2016 at 09:23
My Dad is a normally healthy 68 year old, who still works. In June he was diagnosed with prostate cancer, and rather harshly told it had spread to his bones and lymph node and it wasn't curable. His PSA was 117.

He started on hormone therapy injections immediately and has since had 4 lots. He also started chemo as part of the stampede trial. He has been feeling unwell, extremely worn out and quite down over the last few days. His PSA is now down to 6.7. My brother and I feel optimistic that his PSA has dropped dramatically and we are hoping this is a good sign?

This roller coaster of emotions and feelings is absolutely horrific for all of us as we are an extremely close family, and to see our Dad so low is quite unbearable. My Dad is struggling with what the future could hold, as there's no time scales and he likes to be in control of everything.

Any thoughts and advise greatly appreciated.

User
Posted 17 Aug 2016 at 09:48

Hi Annie, it would be better to start your own thread so that replies to you and to Viv don't get muddled up. But re your question, it depends what you mean by 'a good sign' - generally, I would hope for the PSA to have gone lower than 6.7 by now but the chemo can cause a rise as the cancer cells fight and then die. A better marker of how well the HT is working would be to keep track of his testosterone level rather than his PSA - do you have his most recent testosterone score?

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

User
Posted 17 Aug 2016 at 10:07
Thank you. It's the first time I have posted so didn't know where to write really. I've done my own thread now. Thanks X
User
Posted 17 Aug 2016 at 11:08


Lovely news Viv. Thanks for the update

*******

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2016 at 16:38

Hi
I'm just after a little advice if possible plz ?
My dad has his first post op app with consultant this coming Wednesday, He will be seeing the nurse too, what I would like to ask is a general idea of what will be discussed apart from my dads op results, PSA result etc, My mum and me will be going along with my dad to his app but my dads quite shy and I don't want to make him feel uncomfortable if they start chatting about ED, pumps viagra etc, although it wouldn't bother me or my mum one little bit I know it would my dad,
I don't mind not going along if this is the case, will these discussions be with the nurse or consultant or both please ?
Thanks in advance
Viv X

The only time you should look back is to see how far you have come
User
Posted 11 Sep 2016 at 17:36
Hi Viv.

My dad had a post op appointment, but with surgeon about 6 weeks after. It was to discuss PSA results and he was given all clear. 2 weeks later he had appointment with nurse, there were several other men there, all In room for info on post op ED, told them all about possible methods and shown a video of a pump, how to use etc. So your dad could be there to discuss that side of things. My dad has had another appointment regarding ED since, they told him even tho he's not that sexually active anymore, they advise to still use the pump every now and then as like any muscle, if u don't use it, it gets weaker. My dad told the nurse 'it's such a big ado about a small thing', haha!! All the best.

Colleen x

Edited by member 11 Sep 2016 at 17:38  | Reason: Not specified

User
Posted 11 Sep 2016 at 18:41

Hi Colleen
Thanks so much for the info it helps a lot, just don't want to make my dad feel uncomfortable, think I will stay away and let my mum give me the low down afterwards
All the best to you and your dad too
Viv xxx

The only time you should look back is to see how far you have come
User
Posted 11 Sep 2016 at 19:56

Hi Vivienne.

If memory serves me correctly, ED was mentioned at the post op follow up. Actually, we had a form to fill in and ED was one of the subjects covered. It was then mentioned at the meeting based on what we had written down.

If dad is the shy sort he probably wouldn't want that discussion in front of you so may be wise to stay out of the room, although there wouldn't be anything to stop you going to the hospital with them and travelling back with them would there?

******

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2016 at 21:33

Thanks For the reply and info Sandra, think I may just sit in the waiting room, don't think my dad would appreciate me listening to him talk about man stuff,

Thanks
Viv X

The only time you should look back is to see how far you have come
User
Posted 13 Sep 2016 at 18:01

Hi
I hope this question doesn't seem a bit Niave but thought I'd ask you experts on here rather than google, My dads consultant rang today to give us some AMAZING NEWS !!! My dads first PSA test post op has come back at undetectable, so so happy !! So does this mean my dad no longer has cancer ?
Thanks
Viv X

Dads at hospital tomorrow for post op check up

The only time you should look back is to see how far you have come
User
Posted 13 Sep 2016 at 18:43

That's superb Viv. Very jealous.
The result is basically saying that all of your dads cancer has been removed , and that he is technically cured. However ( sorry ) some men find over a period of time eg 3 years, that their PSA starts creeping up again , meaning that some was left behind ( a positive margin ) and is beginning to grow again , or that the cancer had spread microscopically to elsewhere in the body prior to the op.
It is AMAZING news and the best news you could hope for. A very successful operation with loads of hope attached. Best wishes x

User
Posted 13 Sep 2016 at 18:45

P.S.
If it rises slowly you can have RT to zap what is left., also heading for a full cure. And if it has spread there is RT and HT etc etc. He is in a good position.

User
Posted 13 Sep 2016 at 19:07

Great news Viv.

Bet you are all celebrating eh !!


*******

We can't control the winds - but we can adjust our sails
User
Posted 13 Sep 2016 at 19:53
Hi Viv

Such brilliant news😊

I am so happy for you all.

Kevan

User
Posted 13 Sep 2016 at 20:34
V

The PSA being undectable post op is a brilliant place to start, hope it continues for a long time.

Thanks Chris

User
Posted 13 Sep 2016 at 22:30
Wonderful!!
User
Posted 14 Sep 2016 at 01:24

Well it is great news although it doesn't yet mean that he is cured. The PSA is important but so is the pathology result which dad will presumably get tomorrow - much will depend on whether the lab says they got it all out. If so, then as long as dad gets undetectable PSA for 10 years, he will be officially 'in remission' although some hospitals say that remission is 5 years of undetectable.

My dad's came back 13 years later though, so your dad will always need regular blood tests to keep an eye on it.

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

User
Posted 14 Sep 2016 at 06:22

Good luck to dad for his post op check up today. Hope the news is encouraging for you all

*****

We can't control the winds - but we can adjust our sails
User
Posted 14 Sep 2016 at 09:52
Hi,

Hope everything goes well today.

Please give your Dad my Best Wishes.

Steve

User
Posted 14 Sep 2016 at 10:57

Good morning guys !!
Thanks for your input Chris. And Lyn, I've got a much better understanding of all this now, So although an undetectable PSA is a great starting point post surgery things may/may not change further down the line, fingers crossed it doesn't !!
So the PSA counting journey continues ... . .. ( but we won't let it consume us, this awful disease has taken enough already)
Thank you all for the well wishes too

Dad was talking to an old work colleague the other day who has a PSA of 15 ( the same as my dads) but doesn't have cancer !!

Anyway hope you are all taking care of yourselves

Viv X

The only time you should look back is to see how far you have come
User
Posted 14 Sep 2016 at 13:46
Lovely news good luck for today. Jayne
 
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