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My dad has just been told he has Prostate cancer

User
Posted 24 Jun 2019 at 18:55

Thanks everyone. Just wondering how people dealt with climbing stairs after surgery? We’re wondering whether to bring the spare bed downstairs so he’s on the same floor as the kitchen and a toilet so doesnt  need to be on the stairs, or Will he be able to climb stairs? Ah roll on Monday so the surgery is done and recovery can start!! 

User
Posted 24 Jun 2019 at 20:46

Thank you for the Shopping list. I'll share this with my dad. 

My dad has been told that the cancer hasn't spread to the lymph nodes. When we saw the surgeon he advised that he would be taking some (5 I think) to check as a precaution. At the same time he said this can have the side effect of fluid retention in the area as there is no lymph node to drain it. 

User
Posted 24 Jun 2019 at 21:14
Going up and down the stairs is an important bit of the rehabilitation. They may even get him to climb some stairs before they let him come home.

He needs to move around and keep active without overtiring.

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

User
Posted 25 Jun 2019 at 10:43

Okay thank you. I’ve noticed since we’ve been on this journey that  it is like a rollercoaster. With each bit of good news we’re still worrying for the next step. I guess now our main concern is the lymph nodes, then I’m sure it’ll be the results of the removed prostate and then the post op PSA. Wishing we could fast forward to that point. The main thing at the minute is wondering what recovery will be like. Does anyone know if the surgeon will tell us about the lymph nodes after surgery or do things need to be sent away to be examined?? 

User
Posted 25 Jun 2019 at 12:08
My surgeon told me that lymphoedema (water retention) occurs in 3% of cases post-prostatectomy, where lymph nodes are removed.

It can occur years later, often in the lower limbs. I thought I had it the other day when my feet swelled up, but it seems that was the result of tramping round Hamburg and Brussels on foot for three days!

The removed lymph nodes will be examined at the post-operative biopsy, and yes, you will be told if the cancer had spread to any of them.

Cheers, John.

User
Posted 25 Jun 2019 at 19:25

Hi

I am just over 5 weeks post removal op. I saw the physio on Monday she was happy with my progress and said I couldn’t start driving again, but, only for short distances suggesting no more than 30 minutes. Initially I was told by the Macmillan nurse it would be about a month to make sure that I could carry out an emergency stop.

You will probably know yourself when you are ready.

On another note, my histology result appointment had been moved back three times, my op was on 18 May with the results not being given to me until 20 August. So I complained to my specialist nurse as I believe this is an unacceptable situation. She rang me today to say that my appointment is now on 2 July, Result!!

Bets wishes

Peter

User
Posted 25 Jun 2019 at 20:15

I sound like a broken record. But surely the MRI would show if the cancer had broken out and spread to nearby lymph nodes? I don’t understand how they can diagnose my dad with localised prostate cancer that hasn’t spread and recommend surgery but now indicate there’s still a small chance it could have spread to the lymph nodes?

User
Posted 25 Jun 2019 at 21:00
An MRI can only show tumours that are mm in size or larger. Spread can be in the form of small clusters of cancer cells that simply don’t show up on scans. In my own case, my PSA was anomalously high for the cancer found in my biopsy, hence the recommendation that I have “wide area” RT to kill such potential undetectable spread.

Best wishes,

Chris

User
Posted 25 Jun 2019 at 23:05
Whether or not the cancer has broken out of the prostate has nothing to do with whether there is spread to lymph, bone or other places. The tumour(s) can be fully contained within the prostate but cells can still move to ther areas through the blood & lymphatic system.

Having said that, your surgeon doesn't believe dad has lymph involvement - he wouldn't be offering the operation if he believed there was spread. However, it is absolutely right for the surgeon to take a couple to have checked just in case.

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

User
Posted 26 Jun 2019 at 11:24

Thank you, that is very reassuring!!

User
Posted 02 Jul 2019 at 21:40

Just thought I’d give an update on my dad! Had his surgery yesterday and doctor said all went well. We were in total shock at the difference from 8pm last night when he was coming round from anaesthetic to today. We walked in to the ward at 2pm to visit and he was stood up dressed waiting to go home! He is getting more sore as the drugs are wearing off and is finding it difficult to get used to the catheter but I’m sure he will get there. He has to go back on the 8th at 8am to get it taken out so only five days to go! I just want to say thank you to anyone who has taken the time to respond to my questions on here. I have a lot to learn but knowing what to expect and having the knowledge to answer some of dads questions has helped so much. Everything on the shopping list we bought and has come in super handy already. It’ll be his first night at home tonight with the night bag I think he’s nervous he’s going to yank it out but we’ve got puppy training pads all around just in case haha. So glad we have got this hurdle out of the way and are keeping positive for his recovery. Just wondering if anyone had any tips on how much getting up and moving about is good, or whether it’s  just as much as you can manage? When he’s stood up for too long we’re telling him to sit down and vice versa...I’m sure he is so happy he is surrounded by so many bossy women ! Just wondering how long people waited for their histology reports on the removed prostate as well? Thanks again!! 

User
Posted 02 Jul 2019 at 22:07

Glad all went well. I waited around 6 weeks for histology report.

Ido4

User
Posted 11 Jul 2019 at 18:44

Hi Userbc, 

I was just wondering how your dad is getting on?

My dad meets his surgeon tomorrow and hopefully we will get a surgery date as its feeling like a very long wait. He has his post op assessment a month ago. 

User
Posted 11 Jul 2019 at 18:57

Hi! 

My dad is actually doing really well. We’re so surprised at the recovery and it’s hard to believe he had major surgery not even two weeks ago. The first week really was the worst because of the catheter. For dad he felt like his recovery was being hindered by it because he couldn’t focus on anything else, but saying that it was very easy to manage so don’t be scared by the thought!! He got it taken out on Monday a week after surgery and is now focusing on just getting stronger. He’s been up and mobile since he came home from hospital but now he has the catheter out he’s starting to go on little walks up and down the street and watering the plants etc. His wounds have healed really well. We were all so scared because we just didn’t know what to expect so if you ever want to hear more about our experience please just ask! It’s  not even two weeks since his surgery and the main thing he’s struggling with is just he feels tired all the time. Even his continence hasn’t been that much of an issue, just a few dribbles (sorry for TMI haha) throughout the day. We’ve got the appointment for his post op review with the surgeon beginning of September which is a bit anxiety invoking to think about but just trying to think even if he needs salsa he RT it’s still positive. Hope you and your dad and family are okay and staying strong xx 

User
Posted 11 Jul 2019 at 21:04

I guess my response to your initial post is a little late, whilst I am a few years older than your Father 26th September 2018 was the date I was confirmed as having Prostate Cancer along with two of my brothers.

I underwent surgery on the 13th December 2018, recovery has gone well! Being an active person before the diagnosis running/ playing football, I am still that same person today, following surgery I was able to commence running building up my distance and confidence.(6weeks)

Has your father had his operation? I had the same tests and scans your father has had with the same results being indicated, cancer within the prostate confirmed after removal at the meeting with my consultant providing the histology of the prostate. 

Be there for him, be positive things will return to normal. Dare I say even down to relationships although with a little help.

Remain positive and strong👍👍👍

 

User
Posted 16 Jul 2019 at 06:55

It's great to hear that your dad is doing so well!! My dad will have his operation on 29 July.

Were you given certain recommendations for the immediate days after your dad came home? My dad lives on his own and I'm just trying to plan now rather than find out last minute. We're told that he will have the operation on the Monday and be out by Tuesday lunchtime. 

Thank you

User
Posted 16 Jul 2019 at 07:51

Hi 

we weren’t given any recommendations as such but the surgeon did say he would be better with someone with him for first couple of days. The day after surgery he was mobile but absolutely shattered, so the first week we did nearly everything for him just because my dad would just do too much if someone wasn’t there to say ‘stop it sit down!!’ Haha. I’d say the main thing we did was keep an eye on the catheter etc and give him his injections (and force him to keep his socks on because he kept sliding them down when no one was looking!)  His operation was Monday and by Friday he was better. The following week both my mum and I went back to work and he’s been looking after himself again. Its actually really surprising how quickly he has recovered and I’m sure your dad will be the same! 

User
Posted 16 Jul 2019 at 18:40

it's  major surgery and everyone reacts differently. 

The main issue as I had wife at home is to help.  Night bag , positioning , emptying . Keep everything spotless.  

Don't over fret about showers and bathing too much. Incisions may be stapled, stitched.  Mine were all glued and healed fine. Keep dry.

 

The key is slowly and steady. NO heavy lifting. Don't over do it.

He will probably be emotionally, physically and mentally drained.

Just keep an eye 're. being off food or not himself. not getting up and about at all  ie red flag signs that something isn't going to plan.  Keep fluid intake high and regular.   ie  output should be light white wine and clear quite soon.

regular bowel function could take a week or 2.  Depends on his reaction to meds etc.

 Is  he employed ?  

In a nutshell.  listen  and observe. 

I know it took me a couple of weeks to walk at a good pace. getting in out of a low seated car was uncomfortable. 

everyone is different. I had major fluid leakage one night from an incision. I was told this does happen !   I knew or was told nothing about it.

 

Hope this helps.

 

 

 

User
Posted 25 Jul 2019 at 22:25

Hi everyone 

 

Looking for a little bit of advice. My dad had his catheter removed nearly three weeks ago (it will be 3 weeks on Monday). He’s using two big pads a day and isn’t using one throughout the night. (He accidentally didn’t put one on one night and woke up dry so trialled not wearing one a second night and has since found he’s able to go through the night dry).  He said that when he sits down he’s absolutely dry but if he stands up or walks for prolonged periods of time that is when he notices slight leakage. He said if he feels like he needs a wee and goes for one straight away he doesn’t drip...but if he tries to hold it in that’s when the dripping starts. We all think this progress is excellent for not even being three weeks post catheter removal, especially him being dry through the night and being able to mostly control his bladder apart from the dripping-however he is really struggling. I think the problem is that he is expecting too much progress too soon and doesn’t feel like he is making any. Does anyone agree that this is good progress for his stage of recovery? What were other people’s situations at this point?? He’s also not sure whether him trying to hold his wee in for as long as possible before he goes to toilet is good practise or whether he should just go when he needs it. Sorry for all of the questions. It’s so difficult seeing him frustrated and struggle knowing there’s nothing we can do. He gets annoyed when we tell him he is doing so well because he obviouly thinks he isn’t so we can’t win! Just got to keep plodding on 

User
Posted 25 Jul 2019 at 23:14
It is amazing progress. The fact that he is dry at night indicates that mechanically, there is no permanent damage so the dripping during the day is simply because his brain needs to re-learn the messages for bladder control, similar to when a toddler is being toilet trained. It is a shame that his urologist didn't make clear to him what to expect afterwards.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2019 at 18:15

Hi Everyone, 

My dad finally had his surgery (RALP) yesterday. When I saw him last night I was actually surprised how well he was, groggy but comfortable, sitting up and eating. Today however he has severe stomach pain and is vomiting. From your experience is this normal? I would have thought if this was a reaction to the anaesthetic surely this would have been yesterday? The nurse doesn't seem concerned but it is hard to track them down to speak.

Many thanks for any advice

User
Posted 13 Aug 2019 at 18:21

Hi 

my dad was the same the next day really groggy. He probably seemed better yesterday because the anaesthetic hadn’t properly worn off, the nurses described the next day to us as just being extremely hungover! His tummy will be extremely sore as a robot has been rummaging around down there! It’s extremely frustrating when the nurses just respond by telling you it’s normal...it might be to them but to us its not! Don’t worry too much he will be fine this first week is the worst but remember this is the worst it only gets better! To give you some hope...my dad is only 6 weeks post op and went to see the rocky horror show at the weekend and was dancing the time warp 😂 it will get better. I’m by no means an expert but if you ever want to ask questions then just ask x

User
Posted 14 Aug 2019 at 13:17

Hi

I has similar Gleason score and MRI showed, thankfully, that the cancer had not broken out. I opted for radical prostatectomy which was done on 30th October 2017 and was not offered a bone scan. Glad to say that all seems to be OK and now just have a PSA test every 6 months - last reading 0.018.

I know this will be a worrying time for you, your dad and family but keep positive. it sounds as thought it has been caught in time.

Good luck

Bradders

User
Posted 03 Sep 2019 at 15:39

Hi All,

An update on my dad...he met with his surgeon today who is happy he is in the clear. Pathology showed clear margins, lymph nodes clear and PSA undetectable. To say we are relieved is an understatement. Fingers crossed for undetectable PSA results to continue. 

I have just read back through this thread and get very emotional remembering my very first post and the absolute shock and devestation I was feeling back then, hoping and praying to be at the point we are now.

 

Thank you to anyone who took the time to respond or read to any of my posts, the advice and kind words have been invaluable xx

 
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