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Dad diagnosed and had open prostatectomy

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User
Posted 30 Mar 2017 at 20:14
My dad was diagnosed at the start of the year and within weeks had an open prostatectomy, removing the prostate, lymph glands and semenal vesicles. He was Gleason score 9 and T3a (it had broken through the outer shell of prostate but not to the vesicles apparently). He was up walking the morning after the op and was home within 4 days and was doing fine until after a fortnight when they queried a DVT. He's now in a lilttle discomfort and suffering from fatigue but unsure if this is just the blood thinning jags. We've to wait until 19th April before we see the surgeon again and find out whether the cancer has spread. Can anyone tell me what I should expect and any positives I can look for. My dads a very young 67yr old. Thanks
User
Posted 31 Mar 2017 at 09:30

Hello Suzyb. Sorry it appears your post has been missed so I am bumping it for you in the hopes that one of the men who has experienced what your dad is going through will respond.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 31 Mar 2017 at 10:10

hello Suzy,
Your dad has undergone major surgery and will have quite a long recovery period. I'm not sure how many weeks it is since his op but he should be expecting about a 3 month recovery. Even after keyhole surgery my husband was still tired at 3-4 weeks. now 6 weeks on he is much more back to normal. His sleep at this stage might also be disturbed if he can't get comfortable which won't help.
Sometimes I think Dad's expect too much. Mine is also 67 and very active, he had keyhole surgery to repair a hernia yesterday and despite his protestations about getting on with things he was very gingerly getting into the car when I picked him up from hospital last night.
All that being said if he doesn't feel right it might be worth a quick trip to see his GP to just get the once over, BP, Iron levels, etc.

User
Posted 31 Mar 2017 at 15:56

Great!!
Glad to read good news from you.

Hope my hub will do as well as your dad. He's having prostatectomy on the 26th.

Best wishes

Lola

User
Posted 01 Apr 2017 at 21:41

hi Suzy I had open RP my pathology report showed positive margins I was offered adjuvant RT even though my PSA was undetectable I did have the RT and 2 years on my PSA is still undetectable and I feel fit and well , all the best for the 19th Andy

User
Posted 04 Aug 2018 at 17:35
Suzy, absolute rubbish to suggest that if any PCa cells have got into his bones, that's it for him. If he stays fit and active, he can live on well for many years. Could be that HT alone will knock his PSA back down, but if not, there are loads of other treatments to call upon.

Stay positive and help him to battle on.

AC

User
Posted 03 Jan 2019 at 13:01

So sorry to hear this  Suzy.  Sincere condolences to you.   Lost my dad to prostate cancer in Jan 18 so I know what you're dealing with.  Take care x

User
Posted 03 Jan 2019 at 14:28

Suzy

So sorry to hear of your loss, please accept my condolences.

Thanks Chris

User
Posted 03 Jan 2019 at 17:23

So sorry to hear this Suzy. As you say remember the good times with your wonderful dad.

Ann x

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User
Posted 31 Mar 2017 at 09:30

Hello Suzyb. Sorry it appears your post has been missed so I am bumping it for you in the hopes that one of the men who has experienced what your dad is going through will respond.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 31 Mar 2017 at 10:10

hello Suzy,
Your dad has undergone major surgery and will have quite a long recovery period. I'm not sure how many weeks it is since his op but he should be expecting about a 3 month recovery. Even after keyhole surgery my husband was still tired at 3-4 weeks. now 6 weeks on he is much more back to normal. His sleep at this stage might also be disturbed if he can't get comfortable which won't help.
Sometimes I think Dad's expect too much. Mine is also 67 and very active, he had keyhole surgery to repair a hernia yesterday and despite his protestations about getting on with things he was very gingerly getting into the car when I picked him up from hospital last night.
All that being said if he doesn't feel right it might be worth a quick trip to see his GP to just get the once over, BP, Iron levels, etc.

User
Posted 31 Mar 2017 at 13:09
Hi Suzy

My dad is 58 and had open radical prostatectomy 6 weeks ago. Gleason 7, T2b, PSA 10. He is doing well but still has fatigue. He is an avid walker and hiker and the fatigue has hit him for six. The first week post op was challenging for dad. He found it a real emotional rollercoaster and the general anaesthetic left him feeling woozy plus the morphine made him hallucinate so not at all pleasant.

My dad also found the jabs cumbersome and a pain. He had them for 28 days and would bruise a lot with them.

Six weeks on and dad is doing great. He has had his post op appointment with his consultant and the PCa was fully contained within the prostate so good news. However the consultant was keen to add that it is the first PSA test in 6 weeks time that is the key appointment.

Dad is now popping to work in the mornings when he feels like it. He is still doing his pelvic floor exercises and is now down to the tiniest of pads for insurance more than anything. He listens to his body and when he needs to rest he ensures that he does.

Wishing you and your dad well for the 19th April.

User
Posted 31 Mar 2017 at 15:56

Great!!
Glad to read good news from you.

Hope my hub will do as well as your dad. He's having prostatectomy on the 26th.

Best wishes

Lola

User
Posted 31 Mar 2017 at 20:07
Thank you, wasn't sure how all this works so I appreciate your help in getting my post out there. Just looking to see if anybody has been in the same position as my dad to see what I should be expecting. I know everyone is different and the types of cancer vary too but any advice is gratefully received.
User
Posted 31 Mar 2017 at 20:16
Thank you for your comment. My dads op was on the 10th Feb. We don't go back until 19th April for the full results and see if anything else needs done. I think this is preying on his mind but he says he's fine. He's feeling frustrated that he's not really getting out the bit, despite feeling good for the first two weeks post op!!! It's so difficult trying to be positive while waiting . Thanks again.
User
Posted 01 Apr 2017 at 21:41

hi Suzy I had open RP my pathology report showed positive margins I was offered adjuvant RT even though my PSA was undetectable I did have the RT and 2 years on my PSA is still undetectable and I feel fit and well , all the best for the 19th Andy

User
Posted 13 Apr 2017 at 09:12
Hi again,

My dad had his first bloods done post surgery and PSA reading 1.3. He's now convinced it has spread and is worrying his outlook is bleak. Can anyone give any advice. He's still to go see the surgeon on the 19th so trying to tell him not to worry until then.

User
Posted 13 Apr 2017 at 10:16

Sorry to hear this - the reading certainly indicates that he still has prostate cancer cells somewhere. Hopefully the surgeon will refer him to an oncologist to discuss whether to have adjuvant radiotherapy or wait a while to see what the next PSA test shows. At the minute his PSA is probably a bit too low for a scan to be useful. If he does have RT it may be he is still curable.

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

User
Posted 19 Apr 2017 at 19:53
Well we had our appointment with the surgeon today, not the best news. They removed 35 lymph nodes and the seminal vesicles, pathology showed cells in 7 of the nodes and the vesicles so cancer still there. He's now been put on hormones and will be getting radiotherapy once he is more continent as blasting him the now with RT would totally destroy the muscle and he would have permanently no bladder control. He's remaining very positive. Have to admit I had a bit of an emotional breakdown!!! Surgeon had warned us that surgery alone would not cure.
User
Posted 05 Jun 2018 at 19:12

My dad had his radical surgery in feb 2017 and 35 lymph nodes removed. Post surgery he started HT and then a few months later had radiotherapy. At the conclusion of this his PSA was undetectable, however he’s recently had another blood test which has shown a slight rise in his PSA. I’m now convinced that the cells have spread sone where else in his body and thoughts are running mad. Has anyone experienced anything similar and how worried should I be?? does this mean the cancer is incurable?? 

User
Posted 05 Jun 2018 at 20:22
It depends on the actual PSA score Suzy - how slight is the slight rise?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jun 2018 at 20:51

Hi,

it was 0.2 and now 0.4.

User
Posted 06 Jun 2018 at 00:59
That's not ideal - it seems that he still has some active cells somewhere so yes, the doctors may say that he is no longer curable but that doesn't mean that he couldn't still be with you and feeling well for many years yet.

Is he still taking hormones and if so, which ones is he on? And when is his next oncology appointment?

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

User
Posted 06 Jun 2018 at 06:55

Hi,

yes he’s on hormones but I’m not sure what ones. He is due to see his oncologist in July.

User
Posted 04 Aug 2018 at 10:40

Hi my dad was back to see one of the cancer nurses following the rise in his PSA. They were disappointed for him given everything he has endured and looks like some cancer cells remain. Various questions were asked including the option of chemo, however the nurse said this option was way down the line and for now he would be put on hormone tablets as well as his hormone injections. My main worry is that the cells spread to his bones and then that’s it for him. He has done so well and has always faced everything with a very positive attitude, which I think is essential. He has been left incontinent and despite being given a row by the urologist, he has coped with this by using an external sheath type catheter, Otherwise he wouldn’t have coped or have went on with an active life. My mind constantly works overdrive and just keep worrying what the future holds. He is only 69 and is a young and active 69 at that. Has anyone had any similar experience that they can share with me?? Thanks

User
Posted 04 Aug 2018 at 17:35
Suzy, absolute rubbish to suggest that if any PCa cells have got into his bones, that's it for him. If he stays fit and active, he can live on well for many years. Could be that HT alone will knock his PSA back down, but if not, there are loads of other treatments to call upon.

Stay positive and help him to battle on.

AC

User
Posted 04 Aug 2018 at 18:34

Thank you, there’s just so many questions and thoughts running mad in my head as I can’t imagine and don’t want to imagine my dad becoming ill and not being here. He is thankfully a very positive person and has coped beyond words which has kept the family positive too. It’s strange to say but even though he’s had this, he’s never really been “ill” as such. He’s just kept going and trying to do as much as he can to keep this horrible disease at bay. Thank you for your post, it’s very much appreciated .

User
Posted 22 Oct 2018 at 12:40

Well, my dad has another set of bloods done and now the PSA has risen again to 2.7. He has been on HT, not sure which one. He’s now contacted his oncologist to see what the next step is. I’m out myself with worry now. 

 
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