hi ladies I am writing this as a dad
my own daughter doesn't tell me a lot how she feels, she doesn't want to discuss it all the time as she gets upset and doesn't want to upset me, I can live with that odd times she will ask me a question which I will answer truthfully but I do not linger on the subject
I know how tough it is for you seeing your dad unwell. as he is the man who has always seemed invincible, just take it as read we know you love us and we (dads that is)would give anything to take away your worry
life is never going to be the same again but as piglet said to winnie the pooh
Piglet: ’’How do you spell ’love’?’’ Pooh: ’’You don’t spell it...you feel it.’’
regards
nidge
Edited by member 25 Feb 2016 at 06:14
| Reason: Not specified
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Dawn,
Welcome to our group although as we always say I am sure you would rather not be here. It is terrifying in the early days of diagnosis so we all know how you feel.Trevor was 65 when he was diagnosed so a similar age to your dad and also with the same spread but that was in 2013 and here we are nearly 3 years on and still continuing on the journey. There are so many treatments know to extend life so although your dad is not curable he can still have many years ahead of him.
I hope this helps to make you feel a little better.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON |
User
hi dawn
yes its a scary time for you all, when you can post your dads results ie gleason and PSA score
I assume from your post that dad has had scans to show the location of the spread
has he been given any Hormone Treatment
click on our profiles it tells you about our journeys
my spread is hips and pelvis
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Dawn,
Glad you have found the forum though none of us really wants to be here ! There are many men here diagnosed with spread to bones. PCa is such an individual disease. Your Dad's medical team should discuss what treatment regimes will help him when all the test results are looked at. There are lots of treatment options and possibly clinical trials he could be offered. There are many people here who will also offer sound advice and suggestions based on their own experiences. PCUK have an excellent 'Toolkit' which you can download from the site. This gives an overview of the disease, treatments, diagnosis and so on and lots of help for carers, practical issues, etc., You havnt said if your Dad has been started on Hormone Treatment, most men with PCa are prescribed this early on. Regards,
Fiona.
User
Hello Dawn. Just to say welcome really as our journey was different to your dad's but as you have already discovered this is a wonderfully helpful and supportive site to be a member of.
Whatever you are feeling now, irrespective of the level of cancer, well, we have all been there and experienced it so we do understand completely just what is going through your minds now.
Horrible word Cancer and the worst case scenarios immediately spring to mind. Once your dad sees the experts and they can give him chapter and verse of treatments etc then you'll find you'll probably cope better.
It's the unknown that's so frightening.
All the best. Keep in touch
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Dawn,
If it has spread to the spine, it is important to be aware of SCC, Spinal Cord Compression, the reason I mention this is that sadly, sometimes doctors dont advise patients about this. The tumours can compress the spine, causing weakness, difficulty walking and interfere with bladder and bowel function. It is a rare effect of the disease, again, there is a helpsheet in the Toolkit about it. Not wanting to worry you unnecessarily but important to be pre-warned. Depending on treatments, many men do respond well. One of the committee members of my local PCa Support Group has extensive bone disease and he has been going ten years since diagnosis ! You are bound to feel shocked for some time, feels like your world has been turned upside down and it will be a while before that improves but it will. You kind of live with the fact a family member has cancer, many of us describe it as a 'new normal' over time. Remember we are always here to support you on this forum. Regards,
Fiona.
User
I am going to say something slightly different. It depends on how high the PSA actually is but as the bone scans are already in and you know there is extensive spread, if the urologist is confident that the primary cancer is prostate there may not be a lot of treatment options to discuss - he may be put straight on to hormones to starve the cancer without any further tests. Where it is known that the cancer has spread to the bones, they sometimes decide not to do a biopsy.
Can you ask dad how high his PSA was?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi there, I know what your going through as last April my dad was diagnosed with advanced prostate cancer 3 days before his 66th birthday. It was a massive shock to us all, as rather stupidly I thought it would never happen to us! And yes we spent days crying but never in front of my dad. My dads psa was 1300. He had all the scans etc and found out the cancer had spread to his bones. The only place it isn't in is his head, legs and arms. He started on hormone therapy and within a week it had come down to 800. At his last appointment it was 0.04 I think. My dad got accepted on a trial, not really sure what it's called I just know he takes tablets everyday and steroids. For the first 6 months he had to have his blood pressure and a bloods tested every 2 weeks. He had radiotherapy on his pelvis and leg as he was getting a lot of pain think it stems from his hip. Unfortunately this made the pain worse almost unbearable and they had to go on holiday the next day. In a few cases this can happen before it gets better. They managed to get there with the help of liquid morphine. He was getting a lot of back pain so had a scan to see if something was pressing on his nerve and maybe need more radiotherapy but onco said he didn't need it. It's a long journeys of highs and lows and life will never be the same again, but you have to stay positive. I find reading these posts make me feel better as I know other people are going through this nightmare as well. I worry as he has had back pain just recently does this mean it's growing agin? He hasn't got a hospital appointment till March. He's seems ok in his self, fed up of the hot flushes but at least he's still here. He recently got diagnosed with glaucoma and the drops he takes can give a high psa reading! You have to remember that there are lots of treatments available and when one stops working hopefully another one will. Be positive and enjoy every day with your dad. Cry when he's not there as what he is going through inside must be awful.
Anna xx
User
Thanks Anna, your post is so like I feel. Dad went back to work on Monday and it's doing him the world of good 😊 We are all away together for a few days from tomorrow and although I'm looking forward to it I'm sad too.
Like you I'm really strong in front of dad but then I think that makes me seem a bit hard too ?
Let's keep in touch I wish your dad well xxx
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User
Hi Dawn,
Welcome to our group although as we always say I am sure you would rather not be here. It is terrifying in the early days of diagnosis so we all know how you feel.Trevor was 65 when he was diagnosed so a similar age to your dad and also with the same spread but that was in 2013 and here we are nearly 3 years on and still continuing on the journey. There are so many treatments know to extend life so although your dad is not curable he can still have many years ahead of him.
I hope this helps to make you feel a little better.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON |
User
hi dawn
yes its a scary time for you all, when you can post your dads results ie gleason and PSA score
I assume from your post that dad has had scans to show the location of the spread
has he been given any Hormone Treatment
click on our profiles it tells you about our journeys
my spread is hips and pelvis
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Dawn,
Glad you have found the forum though none of us really wants to be here ! There are many men here diagnosed with spread to bones. PCa is such an individual disease. Your Dad's medical team should discuss what treatment regimes will help him when all the test results are looked at. There are lots of treatment options and possibly clinical trials he could be offered. There are many people here who will also offer sound advice and suggestions based on their own experiences. PCUK have an excellent 'Toolkit' which you can download from the site. This gives an overview of the disease, treatments, diagnosis and so on and lots of help for carers, practical issues, etc., You havnt said if your Dad has been started on Hormone Treatment, most men with PCa are prescribed this early on. Regards,
Fiona.
User
Thank you for your replies, they really have helped me and my family. Just a little bit more about Dad- he'd had no symptoms of prostate cancer but went to the doctors before Christmas as he'd been feeling very tired. The blood test he had then showed a high level of ALP. Based on this they sent him for a full body scan which he had on 22 Jan. He went to his GP for the results this Friday and that's when he was given this devasting news. In my original post I said that it had spread to his back, neck and shoulders but I obviously didn't take it all in on Friday as it has actually spread to his hips, spine and neck.
After breaking the news to others yesterday and spending most of the day crying, I feel more positive today, helped by your posts 😘.
This is all we know at the moment, he has another blood test tomorrow but I'm not sure what for ? He will then be referred to appropriate specialist unit ? I think we will all feel better when we know what his treatment plan is.
Thanks again everyone, I wish you all well and I'll be back in touch again when we know more xxx
User
Hello Dawn. Just to say welcome really as our journey was different to your dad's but as you have already discovered this is a wonderfully helpful and supportive site to be a member of.
Whatever you are feeling now, irrespective of the level of cancer, well, we have all been there and experienced it so we do understand completely just what is going through your minds now.
Horrible word Cancer and the worst case scenarios immediately spring to mind. Once your dad sees the experts and they can give him chapter and verse of treatments etc then you'll find you'll probably cope better.
It's the unknown that's so frightening.
All the best. Keep in touch
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Dawn,
If it has spread to the spine, it is important to be aware of SCC, Spinal Cord Compression, the reason I mention this is that sadly, sometimes doctors dont advise patients about this. The tumours can compress the spine, causing weakness, difficulty walking and interfere with bladder and bowel function. It is a rare effect of the disease, again, there is a helpsheet in the Toolkit about it. Not wanting to worry you unnecessarily but important to be pre-warned. Depending on treatments, many men do respond well. One of the committee members of my local PCa Support Group has extensive bone disease and he has been going ten years since diagnosis ! You are bound to feel shocked for some time, feels like your world has been turned upside down and it will be a while before that improves but it will. You kind of live with the fact a family member has cancer, many of us describe it as a 'new normal' over time. Remember we are always here to support you on this forum. Regards,
Fiona.
User
Hi All, just a quick update and another question.
Dad went for a blood test today and this is apparently to confirm that the primary cancer is in his prostate? Does that sound right?
Also, he is going to his GP for the results of this blood test next Tuesday - do you think this is when they will talk to him about treatment and the prognosis or will this happen when he sees a specialist - I am so confused!
Thank you all again for your support and love to you all xxx
User
I'm going to leave most of your questions to others Dawn as I know some of them are dealing with spread.
Has your dad not seen anyone at the hospital yet. He is only receiving all this information from his GP? Is that correct?
I doubt very much that the GP will be giving him information about his treatment, that's a consultant's job and would follow a multi disciplinary team meeting where the best possible course of action for your dad would have been discussed.
A PSA blood test determines that something is amiss, is doesn't indicate cancer itself and I'm not quite sure what blood test he/you can be talking about.
Does dad go to the GP by himself. It's a lot to take in when your head is all over the place. Would he let somebody go with him on the basis that two heads (and pairs of ears) are better than one.
We can't control the winds - but we can adjust our sails |
User
Dad has only seen the GP so far, we understand that following the results of this blood test he will be referred to the hospital. He always has someone with his when he goes to the GP, and for this round of results I will be going with my sister and step mum. I thought the same as you with regard to the treatment I just wanted an idea of what sort of news the GP gives?
Thanks x
User
hi dawn
this was my experience
GP did blood test PSA at 20, he did an examination and said prostate felt hard and lumpy and would refer me to a urologist
met urologist who asked lots of questions about how I have been, he then did a further examination and confirmed what GP had said, an appointment was made for a biopsy on my prostate of which they took 10 small cuts to see how far any cancer may have spread
the next step was to wait for results on the biopsy, this will determine your Gleason score and how your treatment may go
this is one of the hardest parts the waiting for the result
I then had a bone and mri scan, this doesn't mean that your dad will have the same, not posted this to scare you but to let you know what may happen
nothing will be decided till you have been to the hospital which I assume will be to see a urologist, don't forget to have your questions written down as your mind can go blank, and a pad to write on
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
This is only a guess but reading between the lines, the blood test he had previously recorded an unhealthy ALP level indicating some bone activity which led to the bone scan? If so, perhaps they didn't check his PSA at the time and the blood test now is to see whether he has high PSA to support the notion that this is prostate cancer. Depending on the results, they may refer him to an oncologist who specialises in urological cancers or, if they think the primary cancer is elsewhere, an oncologist specialising in lymphomas or others.
Very unusual for a diagnosis to come this way round - is it possible that there have been other test results given to dad already that you have not been in the loop for?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn, you are exactly right and it's all making a bit more sense now. The blood test Dad had when he first went to the doctors did show a high level of ALP and they led to the scan on 22 Jan. So I think the blood test yesterday was to check PSA levels.
I am sure that these are the only tests that Dad has had, my concern is that he has ignored symptoms? He is so protective of all of us and I am worried that he will keep things from us to protect us. This something we are going to try and tackle when we get the actual prognosis and treatment plan.
Thanks again
Dawn xxx
User
Hi everyone, just a quick update - dad has just received his blood test results and his PSA level is high - I don't know a number yet? He has been referred to a urologist and we are just waiting for that appointment. Do you think that at that first appointment there will be a chance of a prognosis or is it likely to be just tests at that stage?
Thanks again
Dawn x
User
hi dawn
when I met my urologist for the one and only time, he asked me lots of questions and wanted to me to tell him how I have been, ie toilet trips, leakage etc your dad needs to be totally honest when talking with urologist he may find it embarrassing if you are with him, my wife came with me on 1st visit but let me go into to talk to him on my own
he examined me and from this visit and his experience told me what he thought re my prostate, the biopsy 3days later just confirmed what he had said but they where able to give me my Gleason score all though you have to wait a few weeks for it
so in my experience yes I did get a prognosis, the wife wanted to wait till biopsy results where in before telling anyone, but I told her this guy is experienced and he wouldn't have said what he did if he didn't think he was correct
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
You do usually have to wait for results Dawn but as Bladerunner says, the urologist usually knows what he is feeling and may well tell your dad what he suspects.
He would be unlikely to give treatment options etc until the MRI results are in and until a multidisciplinary team has discussed the best options for your dad.
Have you downloaded the Toolkit yet just in case. It will be helpful when he returns to see the urologist
We can't control the winds - but we can adjust our sails |
User
I am going to say something slightly different. It depends on how high the PSA actually is but as the bone scans are already in and you know there is extensive spread, if the urologist is confident that the primary cancer is prostate there may not be a lot of treatment options to discuss - he may be put straight on to hormones to starve the cancer without any further tests. Where it is known that the cancer has spread to the bones, they sometimes decide not to do a biopsy.
Can you ask dad how high his PSA was?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks everyone. Lyn, I did ask dad what the PSA was and he said he didn't know other than it was high. Just wondering if you or anyone knows whether he is likely to have treatment for the cancer in his bones as well as the prostate ? X
User
Hi Dawn
My hubby has prostate cancer that has spread too, he was diagnosed at 61. The gold standard treatment is hormone therapy (usually with a three week course of tablet called bicalutimide to start with). The HT is usually an implant done every 12 weeks. It is possible that dad will be offered chemotherapy as it is now agreed (I believe) that early chemo can be very effective in Pca (prostate cancer). My own hubby had a Gleason score of 10(bad) and a PSA of 25, and five years later he is still with us. We have been very lucky, but it is possible that your dad could be equally lucky.
There are new drugs called Abiraterone and Enzalutimide and radiotherapy to use to address bone pain issues. My hubby is on an old HT called stillbestril as well as his implant and it's worked really well so far.
Lots of love
Allison
User
Thanks Allison it's so good to hear what is available wishing you and your family well. I'll post an update after the appointment on Monday xxx
User
Hi there, I know what your going through as last April my dad was diagnosed with advanced prostate cancer 3 days before his 66th birthday. It was a massive shock to us all, as rather stupidly I thought it would never happen to us! And yes we spent days crying but never in front of my dad. My dads psa was 1300. He had all the scans etc and found out the cancer had spread to his bones. The only place it isn't in is his head, legs and arms. He started on hormone therapy and within a week it had come down to 800. At his last appointment it was 0.04 I think. My dad got accepted on a trial, not really sure what it's called I just know he takes tablets everyday and steroids. For the first 6 months he had to have his blood pressure and a bloods tested every 2 weeks. He had radiotherapy on his pelvis and leg as he was getting a lot of pain think it stems from his hip. Unfortunately this made the pain worse almost unbearable and they had to go on holiday the next day. In a few cases this can happen before it gets better. They managed to get there with the help of liquid morphine. He was getting a lot of back pain so had a scan to see if something was pressing on his nerve and maybe need more radiotherapy but onco said he didn't need it. It's a long journeys of highs and lows and life will never be the same again, but you have to stay positive. I find reading these posts make me feel better as I know other people are going through this nightmare as well. I worry as he has had back pain just recently does this mean it's growing agin? He hasn't got a hospital appointment till March. He's seems ok in his self, fed up of the hot flushes but at least he's still here. He recently got diagnosed with glaucoma and the drops he takes can give a high psa reading! You have to remember that there are lots of treatments available and when one stops working hopefully another one will. Be positive and enjoy every day with your dad. Cry when he's not there as what he is going through inside must be awful.
Anna xx
User
Thanks Anna, your post is so like I feel. Dad went back to work on Monday and it's doing him the world of good 😊 We are all away together for a few days from tomorrow and although I'm looking forward to it I'm sad too.
Like you I'm really strong in front of dad but then I think that makes me seem a bit hard too ?
Let's keep in touch I wish your dad well xxx
User
Hi Dawn I don't think it makes you seem hard. try and carry on as before as I'm sure he doesn't want to keep talking about it. I just let my dad talk about it if he wants, which he doesn't really. We laugh about his sweats and brought him a fan which he uses. My dad retired, just some odd jobs here and there he finds it hard as he gets aches and pains and sometimes his leg feels weak and like rubber. He and my mum go out and about quite a lot and are away for a few days. It does get slightly easier as you come to terms with it. But I think about it every day. Enjoy your few days away and try not to let this horrible cancer get in the way of enjoying quality time with your family. Your dad will feel much happier knowing he has all your love and support. Yes it would be lovely to stay in touch. Hope everything goes ok for your dad. Xx
Edited by member 24 Feb 2016 at 21:13
| Reason: Not specified
User
hi ladies I am writing this as a dad
my own daughter doesn't tell me a lot how she feels, she doesn't want to discuss it all the time as she gets upset and doesn't want to upset me, I can live with that odd times she will ask me a question which I will answer truthfully but I do not linger on the subject
I know how tough it is for you seeing your dad unwell. as he is the man who has always seemed invincible, just take it as read we know you love us and we (dads that is)would give anything to take away your worry
life is never going to be the same again but as piglet said to winnie the pooh
Piglet: ’’How do you spell ’love’?’’ Pooh: ’’You don’t spell it...you feel it.’’
regards
nidge
Edited by member 25 Feb 2016 at 06:14
| Reason: Not specified
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
some more from winnie the pooh which tend to sum up a lot, and I must admit they brought a tear to my eye
http://brightside.me/inspiration-relationships/20-profoundly-important-things-we-learned-from-winnie-the-pooh-102455/
Edited by member 25 Feb 2016 at 06:18
| Reason: Not specified
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
nidge, bought a whole load of tears to my eyes!! and yes I did think my dad was invincible, your words are so true. I can't imagine what it must be like for you and my dad and anyone's else's dad to be going through this, and your feelings inside. But just know that we do love our dads and just wish we could go back to that time when life was normal.
Anna. Xxx
Edited by member 25 Feb 2016 at 07:54
| Reason: Not specified
User
Nidge, such lovely words thank you so much.
We are all away together now and as lovely as it is the elephant is still in the room.
This is such a surreal time just want to wrap dad in cotton wool but at the same time need him to be the strong indestructible dad he is.
Love to you all xxx
User
Hello Dawn & Anna,
I'm just reading through your posts& I am so sorry that yourselves & loads of other families are going through this,can relate to everything in them,I could have written it myself about my dad just diagnosed 25th Januay,only a month ago with advanced prostate in his bones, it is heartbreaking,we are awaiting outcome of his bone scan on Monday,but since then he has had 2 falls& on Tuesday split his head,ambulance out glued& stitched,refused to go into hospital,but now worrying it is spinal chord compression. It's just a nightmare. I hope you get some strength knowing I am thinking of you's,I do know what it's like as a daughter too
Much love
Eleanor x
User
Hi Eleanor, so sorry to hear about your Dad. This is such a cruel disease and so often it hits families without warning. Please keep me updated on your dads progess. Sending you all lots of love
Dawn xxx
User
So sorry to hear this Eleanor, it truly is heartbreaking having to go through this. It is strangely comforting to come on here and find strangers going through the same thing as you. It can sometimes feel very lonely being left with your thoughts. I hope everything goes ok with your dad and remember to stay positive as it's the only thing you can do.
Anna xxx