Dad diagnosed and had open prostatectomy

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

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

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

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.

User

Posted 22 Oct 2018 at 16:37

Okay so that is a rapid rise and indicates that the cancer is now hormone independent (also referred to as castrate resistant) - in other words, the cancer has learnt how to survive without testosterone. I imagine they will now offer him chemo and / or abiraterone or enzalutimide, two hormones that work particularly well on castrate resistant PCa.

It does seem that your dad has a particularly determined form of prostate cancer but try not to let your worry overwhelm you - we have men here who have done well on abi or enza for two or three years so all is not lost yet. I think I would want to see the oncologist rather than settle for the views of that nurse again though.

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

User

Posted 22 Oct 2018 at 17:23

hi, thanks for the prompt reply and I’m so sorry for appearing very pesomistic, do you mean some men have only lived for three years after starting the other hormone or chemotherapy??

User

Posted 22 Oct 2018 at 17:31

You don't need to apologise for being sad - this is a terrible disease. No, I meant that some men do well and live for three or more years after they have become castrate resistant. Some will not do that well. The sooner dad sees the oncologist the sooner you will have the information you need to be able to understand what is happening. Dad could ask for a scan to see where the active cancer is - that may lead to other specific treatment.

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

User

Posted 22 Oct 2018 at 21:00

Thanks again for the reply. You just don’t know what to do and everything is so unpredictable . He’s very tired at the moment and think that’s making him worry that it’s cancer making him tired rather than side effects from hormone treatment. I just wish I could give him the answers and know exactly what to do for the best. We booked a holiday for December (we have done this every year apart from last year as he started his treatment) and he is so looking forward to it and I just hope and pray he will still be able to go.

User

Posted 22 Oct 2018 at 21:53

The cancer is unlikely to be making him tired if his PSA is only 2.7 so it is most likely to be the hormones, particularly as they added bicalutimide recently. But don’t always assume that everything is cancer related - has he checked he isn’t anaemic?

I doubt very much that it could stop the holiday - even if the oncologist responded with blue flashing lights and said ‘let’s go for chemo’ I don’t think anyone would say it had to be done immediately. Some oncologists would wait until the PSA goes higher before introducing another new treatment.

I would definitely be pushing for a new scan though.

Edited by member 22 Oct 2018 at 21:54 | Reason: Not specified

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

User

Posted 23 Oct 2018 at 17:56

My dad spoke to the nursing staff at the cancer hospital, who had liaised with my dads oncologist and he has to stop his hormones (bicalutamide) and go back to see him in january. Does this sound like a correct course of action at this stage??

User

Posted 24 Oct 2018 at 16:47

Suzy, his hormone therapy hasn't been stopped, merely the bicalutamide supplement. The oncologist wants to get that out of his system and see how his health generally improves, as well as note the effect on his PSA. Sounds sensible to me. Relax!

AC

User

Posted 24 Oct 2018 at 16:53

When the hormone injections stop working, bicalutimide is often added to give the injected version a boost. Once the bicalutimide is withdrawn again the cancer cells get very confused and this can improve the situation - the oncologist wants to wait until January to see if the PSA falls.

It is called anti-androgen withdrawal syndrome and you should be able to find old posts about this by using the search function.

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

User

Posted 24 Oct 2018 at 16:55

This is what a quick search pulled up

https://community.prostatecanceruk.org/search?search=anti-androgen+withdrawal&advanced=false#0|10

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

User

Posted 10 Nov 2018 at 22:53

So my dad was told to stop taking the tablets and continue on the 3 monthly hormone injections and has an appointment with his oncologist on 25th January. Yesterday he started to have abdominal pain and pain in his kidney and went to GP and tested his urine and said he had kidney infection so given antibiotic. This morning he was then passing blood in his urine and still experiencing a pain. Should we be overly worried that its something more sinister?? He’s feeling really fed up now and thinking of cancelling going on holiday in 3 weeks time. Any advice is gratefully accepted.

User

Posted 11 Nov 2018 at 00:25

If the GP diptested his urine and said it was positive for an infection then you can be pretty confident it is just an infection.

Hopefully he will feel in more of a holiday mood in a couple of days; UTIs do make people feel very unwell.

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

User

Posted 11 Nov 2018 at 11:28

hi, further update. My dad has been admitted to hospital and they have said he has a major infection and are treating him for sepsis. Worried sick but he’s in the best place and they’ve started him on fluids and IV antibiotics. Don’t know what more they can throw at him before he’s had enough.

User

Posted 22 Nov 2018 at 19:03

well, what a terrible 11 days we have just endured as a family. Initially my dad was admitted to hospital as per my previous post with sepsis, however his blood pressure was dangerously low so he was sent for a CT scan and at that point they found a bleed in the muscle in his back and an infarction and clot at his kidney. There was no sepsis. By this point he was very ill and had to be given blood and blood products as he was still actively bleeding. The consultants could give no explanation as to why this has happened.

In hinsight now my dad has been very tired for weeks and I kept advising him to have his iron levels checked but the practice nurse wasn’t authorised to do this when doing his blood for PSA checks. He had also been having some pain on his back but assumed this was from doing DIY (prob doing too much). He was feeling bloated but again attributed this to lymphedema.

we later found out all these symptoms were from him bleeding. He was admitted to adult critical care and given more blood. We Were then told there was a vascular procedure available but unsure if he was suitable. The next devastating news was that if he didnt get this and the bleesong didnt stop then there was nothing more they could do.

he was suitable and went for the procedure, however wasn’t actively bleeding so they couldn’t see where to plug but inserted 15 coils to vessels in the area they had seen the bleeding on the CT.

He survived the procedure and kept in critical care for a few days receiving 14 units of blood in total and released from hospital yesterday. He’s knackered and worried now and we Were told there had been nodules found during the CT.

has anyone experienced anything similar. They havent directly attributed this incident to the cancer but did say his vessels may have been weakened with radiotherapy. His kidneys took a hit too. He’s never had any monitoring of his kidneys or liver throughout his treatment, which I think he should have.

sorry this is so long but I’ve tried to summarise

User

Posted 03 Jan 2019 at 10:40

I wanted to pass on the sad news that my dad has lost his fight against this horrible disease. In a matter of 8 weeks the disease had spread throughout his body and he passed away surrounded by his family on Sunday 30th December. if there is any comfort i can take, its the fact that from diagnosis, through surgery and treatment, he kept well. he was active and fit and never once suffered or let the situation get him down. we knew it was an aggressive form he had and our only wish was that we had caught it earlier but who knows if that would have made much of a difference. my dad was a wonderful man and we will always remember the good times and not this horrible disease.

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 13:23

Really sorry to hear about your Dad Suzy.

My thoughts are with you.

Ido4

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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