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So what now??

User
Posted 20 Jun 2018 at 22:25

Hi everyone, I feel like I’m stuck in limbo at the moment. So my dad was diagnosed last May with advanced prostate cancer PSA 318, he was put on hormone therapy right away and had chemo at the end of last year, at the end of the chemo his PSA dropped to 0.4. He had a bad fall and broke his hip and got a pin fitted but since then he’s been complaining about a sore back - again and now he doesn’t have any strength in his legs. I had to get the dr out who got an ambulance to him on Sunday to see what is going on. Since then he’s had an X-ray and a mri and it’s been confirmed that he has a very enlarged prostate and it is putting pressure onto his nerves to his spine. He’s being transferred tomorrow to the beatson in Glasgow to get him started on radiotherapy to try and shrink it. I don’t understand why they can’t remove it?? Can someone explain that to me? If it’s not needed and now causing issues to his lifestyle then why not remove it?! I’m really struggling to understand. I hate to see him in so much pain aswell. He’s been put on morphine to help. so far we know that the cancer is in his bones and lymph nodes. He’s having bother with urine retention now aswell. I just feel like he’s went downhill fast since February and feel so helpless!

also what does the Gleason score mean? This information has never been shared with us.

any help at all would be appreciated

User
Posted 21 Jun 2018 at 03:09
Sadly Dad is beyond the point of cure and where a prostatectomy would help, but hopefully the RT will help alleviate the effects of the cancer he is experiencing. It is important that he promptly reports any further deterioration. There are increasingly more 'down the line' treatments being administered and in the course of development and aside from the RT much will depend on how well and long he responds.to each treatment given as considered appropriate for him.

Barry
User
Posted 21 Jun 2018 at 17:24
Yes it's a good idea to write down questions - which can otherwise easily be overlooked and that you, another family member or friend accompanies Dad at the next appointment with his oncologist as sometimes it is not always possible for a patient to absorb and remember all he is told.

Some men struggle on for a surprisingly long time despite their advanced cancer whereas others do less well and it would be unwise to speculate at the stage because men respond differently to treatment and also that cancer can mutate and spread further, making treatment less effective. But whlist hoping for a good response you should prepare for a less favourable one..

You might find it helpful if you condense his diagnosis under his Profile and progress under hiis Bio. This will provde an easy reference for you and forum members to see how he has been treated and the way he progresses.

Barry
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User
Posted 21 Jun 2018 at 00:45
Hi Letitia,

lots of questions - I will try to answer some of them in an order that makes sense.

Because Dad has mets (spread to other parts of the body like bone) he cannot have an operation to remove the prostate; the operation has significant side effects and he may simply be too unwell to cope, plus removing the prostate would not now slow down the cancer.

Gleason is the score they give to describe how aggressive a cancer is but they can only measure the Gleason by doing a biopsy. Because dad was diagnosed with a very high PSA and advanced disease, it might be that he never had a biopsy - do you know?

Has anyone ever said whether he has mets in his spine? Could it be that they said the tumour is pressing on his spinal nerves rather than his prostate is pressing on the nerves? If so, it sounds like he has something called spinal cord compression, which can stop the legs from working and can also stop the bladder and / or bowel. For some people this is permanent while for others it is temporary and the radiotherapy that they are planning to do may be to try to shrink the tumour that is pressing on the spine.

Is he still on hormones or have they stopped all his other cancer treatment while they deal with this?

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

User
Posted 21 Jun 2018 at 00:51
Sorry, just checked back to your old posts and your dad did have a biopsy at the beginning - his Gleason score was 9 which is either a G4+5 or a G5+4. A 5 is the highest number and a 3 is the lowest.

The numbers describe how distorted the cells are - the first number is the majority of cells and the second number is the next biggest group. What a G9 tells you is that your dad has a very aggressive cancer but not really much else and in your dad's case, the Gleason doesn't make much difference to treatment plans or anything like that.

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

User
Posted 21 Jun 2018 at 03:09
Sadly Dad is beyond the point of cure and where a prostatectomy would help, but hopefully the RT will help alleviate the effects of the cancer he is experiencing. It is important that he promptly reports any further deterioration. There are increasingly more 'down the line' treatments being administered and in the course of development and aside from the RT much will depend on how well and long he responds.to each treatment given as considered appropriate for him.

Barry
User
Posted 21 Jun 2018 at 07:17

Hello thank you Lyn!

yes you are right, he did get a biopsy, and we were told his Gleason score I’m so sorry I had to read back on my previous post also theres so much info to try and remember!

he only had his mri yesterday so once he has been moved to the beatson today I’m hoping theyll tell us more then.

he was due his 3 monthly injection yesterday so as they want to try RT they might leave the hormones for now maybe? my dad may be getting confused also with what is to happen next so I might just need to write all my questions down.

could this be ‘the start of the end’? I’m trying to prepare myself for the worst to be honest. I don’t feel I can talk about that to my dad though.

User
Posted 21 Jun 2018 at 17:24
Yes it's a good idea to write down questions - which can otherwise easily be overlooked and that you, another family member or friend accompanies Dad at the next appointment with his oncologist as sometimes it is not always possible for a patient to absorb and remember all he is told.

Some men struggle on for a surprisingly long time despite their advanced cancer whereas others do less well and it would be unwise to speculate at the stage because men respond differently to treatment and also that cancer can mutate and spread further, making treatment less effective. But whlist hoping for a good response you should prepare for a less favourable one..

You might find it helpful if you condense his diagnosis under his Profile and progress under hiis Bio. This will provde an easy reference for you and forum members to see how he has been treated and the way he progresses.

Barry
User
Posted 03 Jul 2018 at 21:14

Well what a couple of weeks!! So my dad is still in hospital, he had 5 sessions of radiotherapy, his hormone injection and has now been started on tablets. 4 a day and he said they’re like horse tranquillisers because the size of them! I can’t remember the exact name of them enz.... something... he was given another mri yesterday with dye inserted but he can’t remember if it was for the bones or organs. Still waiting on results. His PSA is creeping up aswell, he was first diagnosed at 318 then by the end of chemo in dec it had dropped to 0.3.... its back up to 44 now. His onco isn’t pleased. He’s in the best place though and is being well looked after. his onco did mention though that he might give him more radiotherapy in the groin area so I’m not sure if that means it’s spreading again? He still has a catheter in and is really quite dehydrated so is being put on a drip every other day. His mind etc is still all there, voice is going abit though just hope he’s not coming down with some sort of chest infection. Physio is still going in everyday aswell but is still pretty much bed bound at the moment.

User
Posted 12 Aug 2018 at 22:49

Just a quick update, dads still in hospital. 8 weeks today it’s been and he seems to be going downhill fast. Physio still trying to work with him but not getting very far. He still has a catheter in which is now showing blood again, the docs have sent for urine, stool, and bloods to see where this infection could be. He’s now on so many tablets he doesn’t even know what they’re all for. Prozac, morphine paracetamol daily injections to thin his blood and one of the cancer tablets (4 a day) but I can’t remember what one it is. His weight is dropping dramatically ~2 stone in 8 weeks but he doesn’t want to eat. He’s now been given a wheelchair but living in a flat up a flight of stairs, I’m not sure how that’ll work! OT is going to the house to asses it. 

He just looks so bored and tired. Said he has a burning feeling in his stomach nurses think it’s down to all the tablets he’s on. 

Just all so draining :( 

 
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