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My dads op in 10 days

User
Posted 20 Jan 2019 at 08:57

Hello I am new here taken alot to have the courage to type this as I'm still in alot of shock of the diagnosis that my dad has prostate cancer.

He is due to have his prostate removed on the 30th via the robotic technique, now hes panicking as well as my disabled mum.

The nurse told him expect to be in hospital at least 3 nights after the operation, he does suffer with high blood pressure so I'm hoping its just precautionary for that reason.

My question is before the OP will he be tested to see if the cancer has spread ? I mean in all it's been about 6 weeks from start to finish (well to his op) but how my mum described what the nurses said it is quite an aggressive form. 

I cant talk to my mum as shes had a lot on her plate and same for my dad I just keep it in or cry it out.

Sorry for a long post I'm just terrified about what's to come as obviously its life changing and hes been told at least 3 months off work (hes a truck driver) so it's all a huge worry. 

 

Thanks 

User
Posted 20 Jan 2019 at 10:01

Firstly no apology needed for sharing your scary news. I had my operation nearly 4 years ago and am fine. Obviously every case is different but there are plenty of people on here who have been through the process and come out the other side. It is a shock to everyone close to you and you need to talk if you can. 

I spent 2 nights in hospital and once the catheter came out I was functioning well. It drained me but it didn't take long for my energy levels to return.

Your Dad should have had a bone and body scan to see if it has spread from the capsule.

 

Please feel free to read my profile or message me if you need any further support.

Edited by member 20 Jan 2019 at 10:30  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 20 Jan 2019 at 11:33

Sorry you find yourself here and it is indeed very frightening. The good news is that the consultant (or more likely the Multi Disciplinary Team ) think that the operation is the best way forward for your dad with intent to cure.. They wouldn't normally do it if they thought the cancer had spread significantly or that he wasn't fit enough.

He will certainly have his PSA number, Gleason score from the biopsy and hopefully an MRI scan. Depending on on how high they think the risk of spread is they would have done further scans. In my husband's case they did not do any bone scans etc as the other tests indicated a low risk of anything showing up.

For many men they never need any further treatment following the op and that is what we are hoping for 14 months down the line. But of course there is never any guarantees with cancer and it can re-appear sooner or later. Even if it does come back there is many more treatments that can hold it at bay for many years depending on how aggressive it is.

You will definitely be frightened but you do need to talk to your parents about it. You will be be able to support each other through this. Whatever happens you are very likely to have him for many years to come.

Very best wishes

Ann

Edited by member 20 Jan 2019 at 11:33  | Reason: Spellng

User
Posted 20 Jan 2019 at 11:38
Aggressive doesn't always mean what you think it means, particularly in relation to prostate cancer. Aggressiveness is determined by how distorted the cancer cells are; your dad will have been given a Gleason score which will look something like G8(4+4) or G9(4+5) or similar.

Not all hospitals do bone scans for all men; they use the information available to them to decide whether there is a risk or likelihood of it having spread. The fact that they have offered him surgery indicates that they believe the cancer is still contained in the prostate, otherwise they wouldn't be doing it. Their risk assessment will be based on the PSA, the Gleason score, how many samples were positive, how much cancer there was in each of the positive samples and where in each sample it was positioned (near the middle, well inside or near the edge). Has he had an MRI scan and just not mentioned it to you with everything else going on? It may have been before his biopsy?

I am not sure why you are concerned about the 3 nights in hospital? It is major surgery so the hospital will want to know that he is able to move around easily before they let him go home, particularly if they know he is a carer for your mum. Sometimes the hospital says 3 nights but it is only actually 2 nights if all goes well and they need the bed. Personally, I would want him in hospital for as long as possible as the pain relief is better.

There are obviously diagnostic results that you either don't know or just haven't told us, that would make sense of your dad's situation. It would be a great shame if he has been rushed into agreeing the operation without an opportunity to talk to an oncologist to consider alternatives such as radiotherapy or just monitoring it for a while, but I guess he is unlikely to want to delay the operation just because of something you have read on here. The best thing you could do for yourself and your parents is phone the number at the top of this page and order the toolkit - that will explain the different types of prostate cancer, what the results mean, and info about surgery and other options.

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

User
Posted 20 Jan 2019 at 12:44

My surgeon, Professor Whocannotbenamedhere, offers a three-night hospital stay in his private clinic after prostatectomy, for which he charges £19,950.

In contrast, his NHS patients are well enough to be discharged the day after the same operation, by the same surgeon, with the same robot equipment, which I think must be testament to the superiority of our National Health Service over privatised medicine!

So your dad will be in good hands in hospital for the three days post-op. Less chance of any complications causing problems.

If you fill in a profile for your Pa - check out mine and others for examples by clicking on our screen names - the good people here will be able to offer more targeted personalised advice.

Best of luck.

Cheers, John

Edited by member 20 Jan 2019 at 12:57  | Reason: Not specified

User
Posted 20 Jan 2019 at 15:15

If his medical team have told him he will need to be off work for 3 months, then there is probably good reason for that and we shouldn't be saying any different. If he goes back to work earlier than recommended and has an accident, he won't be insured and anyone that he injures will get no compensation plus he and his employer risk criminal charges as well as HSE action.

As some of you know, John drove a company car and the company insurance would not cover him until 12 weeks post-op + they wanted a letter from the surgeon confirming that he could drive (which the surgeon refused to provide). Physically, he could have been back earlier and was able to work from home from about 9 weeks but there was no way he was going to be driving on public roads without cover.

If his doctor says after the op "you are doing great, you can go back to work at 6 weeks" or whatever, then great ... but otherwise, I think he should stick with his medical advice & employer occ health department rather than us.

http://www.hse.gov.uk/workplacetransport/personnel/medicalfitness.htm 

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/736938/assessing-fitness-to-drive-a-guide-for-medical-professionals.pdf 

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

User
Posted 21 Jan 2019 at 12:31

I had my op in September last year, I was gleason 8 with an aggressive cancer contained, one night in hospital and no issues since, its a shock when you get the news, but the support I received was and still is excellent, I was able to return to work after 5 weeks but kept my work load limited to light work, trust the surgeons they know what they are doing, follow all the guidelines and I'm sure he will be fine.

User
Posted 21 Jan 2019 at 13:29

Thank you all for your replies and support, it means alot.

I dont know all of the exact information as I was unable to attend the results appointment where as my mother did (but her explanations aren't great, nor is her memory) 

I guess I just have no one as my mum and dad push me away when I try to ask questions or talk about it, I guess they're all scared and still not quite processing the news.

I understand the 3 nights stay it's just obviously my dad is a very stubborn man and wouldnt like to stay more than he had to.....but for me as long as hes ok I'm fine with that part.

 

Also once obviously he gets the all clear from this operation how often will he be having cancer check ups? 

I'm glad there are so many success rates here as it puts my mind and rest, thank you all so much I'm glad I came to this community as I feel at ease so much more now.

 

Thanks again 

Maria  

User
Posted 21 Jan 2019 at 14:30

Hi Maria,

Once the operation is over his problematic prostate will be sent off to the lab and the results of this investigation should be reported back to your Dad. Obviously once it's out it can be tested so his staging can be more accurately assessed. He will require regular PSA blood tests. I had 3 monthly, then 6 monthly under the supervision of the hospital and now have been discharged and have my bloods monitored by my GP.
Hope that helps.

Paul

Edited by member 21 Jan 2019 at 14:31  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 22 Jan 2019 at 08:14

Wow, its amazing how much work is put into it after the operation is completed. I'm a natural worrier which is no good to me or anyone else infact.

Makes it worse I cant visit him before his op as I'm laid up so not wanting to jeopardise his surgery.

I know hes scared and the helpless feeling is the worst part about it all. 

 

Glad to hear the survival stories it gives me so much hope thank you all so much 

User
Posted 30 Jan 2019 at 10:54

Thank you Paul for your message I couldn't respond it's just waiting for news now :-/ I cant remember what time my mum said he was meant to be in the hospital for.  I'll let you know how it went when I know more thanks for the support guys and gals x

User
Posted 30 Jan 2019 at 21:12

May I ask Paul hun.....my mum arrived back from visiting my dad it all went well 4 and a half hours in surgery but it's gone, we have been told that my dad wont know if hes all clear from cancer for 5 weeks now, call me stupid but if it was contained within the prostate surely that is the end of it? I'm just a little deflated as I really had my heart set on this being the huge step before he could recover and have the blood tests 3 monthly etc. Thank you 

User
Posted 30 Jan 2019 at 22:09
It will take 5 or 6 weeks for the gland to be dissected and examined in a lab; they will check carefully that they have cut it with clear edges and that the cancer staging is as expected. They will also do another PSA test to check that the level has dropped - this confirms for them whether any cancer has been left behind.

It is a little naive to have thought it was all done and dusted as soon as the op is finished; he will be tested regularly for the rest of his life even if the results from the op are good. Cancer sometimes has a nasty habit of coming back in the future and quite a high proportion of men have their cancer upgraded by the post-op pathology.

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

User
Posted 30 Jan 2019 at 22:10

Hi

The biopsy will give a more accurate position on Gleason, staging and general pathology. They will have taken out seminal vesicles and probably local lymph nodes which will all be examined. The first post op PSA test will be a wee while after the operation as that gives time for residual PSA to be processed out of the body.

At that point he will have the conversation with his specialist on where he is. There is a very good chance that (as Lynn puts it) it is all in a bucket but there are no guarantees. His PSA will be monitored every three months thereafter. With a fair wind that will be it but if it does come back (or had already escaped) there is more help available. I had Salvage Radiotherapy with hormone therapy as I had a return. That stands a good chance of dealing a final blow. The best approach is to take it one stage at a time and (note to self) enjoy the moment and be positive for the future.

Lynn beat me to it by one minute 😂

edit: i read the but about your parents not wanting to talk about it. Not unusual. Gibe them time. Try and be there for the next appointment or suggest a group chat with the support nurse if you feel you need to know more to support them but dont push.

Edited by member 30 Jan 2019 at 22:16  | Reason: Not specified

 
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