Found it
Originally Posted by: Trevor Boothe
Got to thinking about this Cancer and the journey that we are all on. This is just a little poem about the road we are all travelling. Hope you enjoy it.
The station is so busy far to hectic for me, I can't remember what train they said , I'm not sure where we should be. I look at him for reassurance but he looks more confused than me, sit down and take the weight of I'll fetch us a cup of tea.
I spy the ticket office but there's crowds of people there should I push my way through or just politely que.
The family in front of me have buckets and spades day trippers I thought, they brought a return ticket to RP they say it's nice there this time of year. I think they used their rail card and this reminded me I had accidently dropped mine when I went to get the tea.
Finally it's me, 2 tickets to Cancer central please, "sorry love this window is return tickets only you need window 3. I looked around for window 3, this station this station is so busy it's beginning to worry me.
I saw a guard he might help. " Excuse me do you know where I can find window 3 , you don't want window 3 love that's the non stopper it terminates at the end of the line. OH I thought bu@@er me, so where should we be. Try window 2 he said that's the scenic route it stops at all the stations.
Come on I said to him lets try window 2 there's a buffet car included and you get a free cup of tea.
Are you sure this is our train he says , are you sure you heard him right? The speaker booms out the train leaving at platform 2 is for Cancer Central and is calling at all stations so of we set into the night. Yes I thought I heard him alright.
The lady with the buffet car came rattling down the aisle anyone with a HT season ticket gets a free curry, that made him smile.
We dozed awhile grateful for a nap, The train started slowing as we approached Chemo many fellow travellers stood up we gave each other a knowing nod as the speaker said Mind the Gap.
The train is speeding along know, clickety clack , clickety clack , should we stop at Abiraterone or go further up the track.
We chatted to the man opposite he was going to Enzalutamide, he said it's brilliant there's a water park with a slip and go slide.
This journey has been exhausting and I think we both agree, if we have to come this away again it'll be the Bus for him and me.
BFN
Julie X
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi
I'm really sorry for your news! I'm not sure what I can offer except to say that my dad has just been diagnosed with prostate and bladder - they thought it was in his Bones too but after a full body scan it luckily wasn't.
He started the hormone therapy and will have radiation however.....3 weeks later they pulled him back in and following more tests it's spread to his bowel, I've done some research and it's very rare that it goes there!
So now it's spreading quicker than they are treating it and it's a rare type!
I have a 7yr old, I'm terrified for my Dad and my daughter and all of us.
What I can offer is knowledge really is power! Forwarned is forearmed this gives you time to prepare and to spend quality time together!
There are always miracles out there have a little hope but keep your head and know that no matter how hard it gets there really is ALWAYS someone else who knows how you feel!
User
Hormone therapy will almost certainly knock the PSA to single figures and solve the back ache problem, but only for a few years, then a stronger drug will be used. I'd be slightly surprised if he lived until 85, I'd be surprised if cancer killed him before 80, but that is because he is already 75, and even without cancer his life expectancy is 87.
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User
If he is in otherwise good health push for the book to be thrown at it: Chemo, HT and possibly RT too.
User
It would be helpful if he could talk to someone like the PCUK nurses (number at top of this page) or his specialist nurse if he has been allocated one, so that he has a better understanding of his situation. It really shouldn't be looking bleak to you - he is incurable but not terminal; there are so many treatments now and we have men here with a diagnosis like your dad's who are still here 15 years or more later. 10 years is not uncommon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
PS just to give some context to your dad's PSA score. We once had a man here who was diagnosed with a PSA of 13,000 and he survived for 5 years despite a couple of heart attacks during the same period!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Also, you may find it a bit reassuring that men with mets in the bones tend to do better than with mets in soft organs like lung, liver or brain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Met a guy when having my radiotherapy last year who had a starting psa off 1500 in 2012 and was still here and battling away 🙏 👍
User
An inspiration well found Lyn 👍
User
Yes, the scan that showed the lymph node mets would also have picked up any soft organ mets so not something your dad needs to worry about
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
9 seems too low for PSA so assume it is the Gleason score. Cancer cells are graded according to how far they have deviated from normal cells, the lowest being 3 and the most advanced being 5. The most numerous cells are shown first out of 5 with the next most numerous second out of 5. These two components are then. added together to form the Gleason score. With a 9 this could be 4+5 or 5+4, the latter being the worse as more cancer cells have shown the highest grading.
Gleason is a useful measure of the make up of the cancer in the Prostate derived from biopsy. What really makes more difference is the staging which denotes as well as can be assessed with an insitu Prostate, whether the cancer is well contained within the Prostate, is in the process of breaking out, or has done so and spread elsewhere and possibly location.
Barry |
User
You are on the right path. In metastatic prostate cancer, hormone therapy is the first line of treatment and most patients respond pretty well to the treatment. Once the prostate cancer becomes hormone or castration-resistant it may have switched to chemotherapy later on.
User
My father, aged 75, has been recently diagnosed with advanced prostate cancer, metastasised to his bones, with a PSA of 839 ng/ml. It came as a shock to me.
He was mainly complaining of back aches, which led him to visit an orthopedist. This is how the whole story unfolded.
He will start hormone therapy next week and biopsy will take place as well. No other organs seem to be affected. His oncologist seems to be optimistic, whereas I sometimes feel devastated.
We have to be patient, for sure.
Edited by member 23 Jul 2022 at 18:22
| Reason: Not specified
User
Hi
My psa in late March just over 2000
Last blood test result about 4 weeks ago 3.5 and feeling positive your not alone be strong 💪
Show Most Thanked Posts
User
If he is in otherwise good health push for the book to be thrown at it: Chemo, HT and possibly RT too.
User
Thanks so much for your reply.
Would they generally do all these treatments at the same time or in stages?
User
Hormone therapy is continuous.
Any other treatments are usually one at a time on top of the hormone therapy.
User
Evening everyone
I’m just wondering if anyone else can offer any words of advice or comfort. My dad is so scared and I don’t know how to comfort him or what to do. They’ve started hormone therapy and heading for chemotherapy as there are multiple bone mets and lymph node involvement. I’m absolutely terrified. I’m staying as positive as I can for him, but it all looks so bleak.
Thanks so much
User
It would be helpful if he could talk to someone like the PCUK nurses (number at top of this page) or his specialist nurse if he has been allocated one, so that he has a better understanding of his situation. It really shouldn't be looking bleak to you - he is incurable but not terminal; there are so many treatments now and we have men here with a diagnosis like your dad's who are still here 15 years or more later. 10 years is not uncommon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
PS just to give some context to your dad's PSA score. We once had a man here who was diagnosed with a PSA of 13,000 and he survived for 5 years despite a couple of heart attacks during the same period!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you so much.
I’ve passed those really helpful comments to my dad.
I’ve seen your helpful comments on other posts, I can’t thank you enough.
I can’t believe someone had a PSA that high!
User
You can probably find posts from his wife (who was inspirational and very, very funny) through the search function - Trevor_Boothe
She once wrote a poem about a diagnosis of advanced PCa as like a train journey - will try to find it.
Our urologist said the highest he had ever had was 160,000 although sadly he did not survive for very long
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Also, you may find it a bit reassuring that men with mets in the bones tend to do better than with mets in soft organs like lung, liver or brain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Met a guy when having my radiotherapy last year who had a starting psa off 1500 in 2012 and was still here and battling away 🙏 👍
User
Found it
Originally Posted by: Trevor Boothe
Got to thinking about this Cancer and the journey that we are all on. This is just a little poem about the road we are all travelling. Hope you enjoy it.
The station is so busy far to hectic for me, I can't remember what train they said , I'm not sure where we should be. I look at him for reassurance but he looks more confused than me, sit down and take the weight of I'll fetch us a cup of tea.
I spy the ticket office but there's crowds of people there should I push my way through or just politely que.
The family in front of me have buckets and spades day trippers I thought, they brought a return ticket to RP they say it's nice there this time of year. I think they used their rail card and this reminded me I had accidently dropped mine when I went to get the tea.
Finally it's me, 2 tickets to Cancer central please, "sorry love this window is return tickets only you need window 3. I looked around for window 3, this station this station is so busy it's beginning to worry me.
I saw a guard he might help. " Excuse me do you know where I can find window 3 , you don't want window 3 love that's the non stopper it terminates at the end of the line. OH I thought bu@@er me, so where should we be. Try window 2 he said that's the scenic route it stops at all the stations.
Come on I said to him lets try window 2 there's a buffet car included and you get a free cup of tea.
Are you sure this is our train he says , are you sure you heard him right? The speaker booms out the train leaving at platform 2 is for Cancer Central and is calling at all stations so of we set into the night. Yes I thought I heard him alright.
The lady with the buffet car came rattling down the aisle anyone with a HT season ticket gets a free curry, that made him smile.
We dozed awhile grateful for a nap, The train started slowing as we approached Chemo many fellow travellers stood up we gave each other a knowing nod as the speaker said Mind the Gap.
The train is speeding along know, clickety clack , clickety clack , should we stop at Abiraterone or go further up the track.
We chatted to the man opposite he was going to Enzalutamide, he said it's brilliant there's a water park with a slip and go slide.
This journey has been exhausting and I think we both agree, if we have to come this away again it'll be the Bus for him and me.
BFN
Julie X
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
An inspiration well found Lyn 👍
User
Just reading your replies, thank you!
Would the soft tissue CT report on any findings within said internal organs? I have a feeling he had to have an injection for that CT as well as the bone scan, but I might be wrong. They have only mentioned bone mets in the letters he’s received so far. He’s got a the number for the specialist nurses, so I think he will give them a call. I think it’s just easier for him to ask me at the moment, as he wraps his head around it all. He’s been so fit and well (apart from minor stuff and asthma), I think he’s just finding it hard to ask them for help (and he told me yesterday he doesn’t think he wants to know any more). He was very grateful of your replies on here, so thank you!
User
I hope he is doing well!
I’m humbled by so many people and posts here.
Thanks so much for your reply!
User
Yes, the scan that showed the lymph node mets would also have picked up any soft organ mets so not something your dad needs to worry about
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you so much @LynEre
User
Hi
I'm really sorry for your news! I'm not sure what I can offer except to say that my dad has just been diagnosed with prostate and bladder - they thought it was in his Bones too but after a full body scan it luckily wasn't.
He started the hormone therapy and will have radiation however.....3 weeks later they pulled him back in and following more tests it's spread to his bowel, I've done some research and it's very rare that it goes there!
So now it's spreading quicker than they are treating it and it's a rare type!
I have a 7yr old, I'm terrified for my Dad and my daughter and all of us.
What I can offer is knowledge really is power! Forwarned is forearmed this gives you time to prepare and to spend quality time together!
There are always miracles out there have a little hope but keep your head and know that no matter how hard it gets there really is ALWAYS someone else who knows how you feel!
User
@MariaMC - I’m sorry to hear of your dad’s diagnosis. Thank you for your kind words. How is your dad doing?
Update on my dad - he’s had his biopsy results, Gleason score 9. My head is all fuzzy, not really sure what to do!
User
Hiya thank you for your reply and I'm sorry about yours. What does a score of 9 mean? How is your dad doing? Its just horrible isn't it 😔
User
9 seems too low for PSA so assume it is the Gleason score. Cancer cells are graded according to how far they have deviated from normal cells, the lowest being 3 and the most advanced being 5. The most numerous cells are shown first out of 5 with the next most numerous second out of 5. These two components are then. added together to form the Gleason score. With a 9 this could be 4+5 or 5+4, the latter being the worse as more cancer cells have shown the highest grading.
Gleason is a useful measure of the make up of the cancer in the Prostate derived from biopsy. What really makes more difference is the staging which denotes as well as can be assessed with an insitu Prostate, whether the cancer is well contained within the Prostate, is in the process of breaking out, or has done so and spread elsewhere and possibly location.
Barry |
User
@MariaMC - it’s 4+5 Gleason. I think it’s a way of grading how aggressive the cancer is. He’s in relatively good spirits, eating well and doing lots of cycling. He looks quite well, it’s hard to believe he’s got cancer. How is your dad doing? Feel free to message me if you need a chat. It’s all just so shitty, isn’t it? X
User
Thanks Barry. It’s Gleason 9 (4+5). It has metastasised to his bones (hip, thoracic spine, sacrum and ribs). His PSA was 700.
My dad has left his folder and black book with me to read over the weekend. I don’t want to, but it might help for me to read it. Thank you for your explanation, it’s really helpful. My dad is sort of planning for the worst but taking good care of himself and doing lots of cycling. It’s all very surreal but I suppose none of us know what’s around the corner, cancer or not!
User
You are on the right path. In metastatic prostate cancer, hormone therapy is the first line of treatment and most patients respond pretty well to the treatment. Once the prostate cancer becomes hormone or castration-resistant it may have switched to chemotherapy later on.
User
My father, aged 75, has been recently diagnosed with advanced prostate cancer, metastasised to his bones, with a PSA of 839 ng/ml. It came as a shock to me.
He was mainly complaining of back aches, which led him to visit an orthopedist. This is how the whole story unfolded.
He will start hormone therapy next week and biopsy will take place as well. No other organs seem to be affected. His oncologist seems to be optimistic, whereas I sometimes feel devastated.
We have to be patient, for sure.
Edited by member 23 Jul 2022 at 18:22
| Reason: Not specified
User
Hormone therapy will almost certainly knock the PSA to single figures and solve the back ache problem, but only for a few years, then a stronger drug will be used. I'd be slightly surprised if he lived until 85, I'd be surprised if cancer killed him before 80, but that is because he is already 75, and even without cancer his life expectancy is 87.
|
User
Hi
My psa in late March just over 2000
Last blood test result about 4 weeks ago 3.5 and feeling positive your not alone be strong 💪
User
Sorry to hear about your diagnosis Phil and thank you for your comment.
I hope you’re doing okay!
User
Sorry to hear about your dad’s diagnosis, Teta. It sounds a lot like my dad’s.
How is he doing now?
User
Update on my dad’s situation.
Dad has gone on his trip around France in his van. He was going to take part in a clinical trial of a drug with some awful side effects, but he wasn’t eligible. No chemo yet, he’s on degarelix and enzalutamide (the latter was recently started a second line of hormone treatment).
Still no bone pain. He’s eating Brazil nuts and drinking pomegranate juice (as per Macmillan’s advice) and continuing to cycle a lot.
Bill Turnbull’s death has knocked my dad for six, sadly. What an inspirational man he was.
Edited by member 03 Sep 2022 at 09:15
| Reason: Info slightly wrong
User
He is on hormone therapy (bicalut tablets 150 on a daily basis, xgeva and arvekap injections monthly, at the moment) and his PSA was about 188, two weeks ago, that he got tested. That is a decrease by almost 80%! No bone pain anymore, full mobility. We even traveled together, spent ten days at our cottage and also swam. But he gets tired more easily. Nice that your father's treatment goes well, as well.
Edited by member 05 Sep 2022 at 20:48
| Reason: Not specified
User
That sounds like similar treatment to my dad’s, though I’m not sure they’ve measured his PSA again yet. That’s great that you’ve had that quality time together. I agree that the treatment makes them more tired.