So sorry that you both are here because it is both of you , not just hubby and your thoughts and well-being are both equally important.
i was diagnosed at 49, T4n1m1a, PSA 342, spread to lymph’s only but chest like your oh.
i did ask for prognosis, 2 years, if I was lucky 3 to 4.
like you both no doubt shock and tears.
i had early chemo, radiotherapy ( as my onco said blasting the mother ship may slow PSA increase) , zoladex 3 monthly ( still) and when that lot was not enough started on abiraterone.
that was over 6 years ago now. My 56th birthday in on Sunday, my PSA is 0.1 and has been sub 0.16 for a couple of years now.
latest scans show all tumours shrunk and some now not visible ( cancer is still there though).
why am I lucky to be here still, let’s face it I must have the dodgy something to give me pca relatively young?
all I can tell you is what I do, it may all make no difference or some may, who knows but now I do what I do I am not going to stop, why would I?
firstly, i run, I run lots , currently on day 422 of a daily running streak averaging over 10k a day. I have run ultramarathons all round the world, the Sahara, Cambodia, the arctic etc, last year over 4,000k. I live for the day,eat well, do Chinese medicine, acupuncture, take some supplements and most importantly do everything with a smile.
i wish I didn’t have cancer of course but my life has been the better for it, I never ran much before but now I am insatiable in that area! I am not stressed and have accepted what will be will be but no regrets about how I have spent these 6 years .
its understandable totally where you are now but please focus on the now and enjoy rather than what will be but at an unknown time in the future.
this link is a short video a friend made about me, it starts with people at the end of a 230k mountain race in 35c in Spain being interviewed and just told that I have cancer , hope it inspires you and your husband , make the most of it.
https://vimeo.com/359287991
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi, I'm sorry I don't know what to say really except sorry. I noticed there were no replies so thought I'd bring it up the list. How people react to treatment appears to differ by case and some last a lot longer than others, over 10 years. Some find treatments that suit them better. New treatments appear. Some try different diets and others say it makes little difference.
You've already been through this once so know more than me. My own opinion is taking anything to extreme probably won't help and when I worry I find alcohol makes it worse. Being in lockdown and winter doesn't help I'm sure. Speaking as the male I've hardly talked about it except to make sure she knows as much as me, as I know my wife worries without telling me. Seeing her worry makes me worse. Although I'm undetectable so there isn't much to say on the subject now. I hope things balance out a bit for you in the next few weeks, if that's any help at all. Regards Peter
User
Like Peter, I can't really say much. I guess the only thing I can say is that after about a year we all seem to get used to the new normal. So you will be able to get on with enjoying your life together (yes there is that shadow hanging over things but it can just sit at the back of your mind). From what I have heard pancreatic cancer is horrible, well I'm not saying prostate cancer is the opposite of that, but I am saying it is manageable for a long time. I am really surprised at a prognosis of 4.5 years, that is too precise. I'm not an oncologist, but from what I've seen on this forum, no prediction is very reliable until the last few months. All I can suggest is carry on you will start to wake up without a feeling of dread.
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User
Hi , i absolutely feel your pain / fear .We were in this situation just over 5 yrs ago .
Gary’s PSA was 23 ,4+5 Gleason with spread to lymph nodes. He was 55 and I was 52 .The diagnosis was a a complete shell shock ,he never had symptoms until one day he was unable to wee . The hospital and Drs were fantastic and within a few weeks he was on a treatment path , unfortunately it came over the Xmas period so it would have been quicker.
Gary had early chemo ,because that was recommended at that time .He thankfully had few side effects and continued to work throughout.within a few sessions his PSA had come down to undetectable.
Gary is on a trial which involves taking Enzo and Abi ,which has kept his PSA undetectable for nearly 5 yrs .
We never asked or were told about a time scale which I’m thankful for as we’ve managed to keep to a relatively normal life .
Gary still works full time ,at a different pace as he was so active in his work and got a bigger waistline.
There are still lots of things to look forward to ,we’ve welcomed 5 new grandchildren in this time .
This website is full of info so ask away if you need any info or just to get things off your chest .
Best wishes for the future and live life to the full .
Debby x
User
It sounds as if your husband is doing all the right things. Keeping active is very important on many levels and I can understand your feelings.
What I learned when my husband was going through all his treatments was to stay as positive as he tried to be and to do all that we could while we could. We made some lovely memories together in the almost ten years we had left together - longer than we expected. It was really only the last few weeks that were tough physically and we coped as well as we could . If you want to do something just do it and when we can all go on holiday again do something you have always wanted to do while fit enough to really enjoy it.
Never give up hoping that a new treatment will appear or that he will do well on the treatments he is given. Above all enjoy each others company and keep smiling. Xx
Edited by member 11 Feb 2021 at 19:43
| Reason: Not specified
User
We found out on 16 Jan that my husband had T4n1m1b. He has now been on Enzalutamide for two weeks. A few hot flushes but seems to be ok. Working from home and pacing himself but it is a terrible terrible shock. Those first few weeks are devastating but it does get a little easier because actually everything feels normal. He isn’t in hospital, he doesn’t look very different and yet...
No doctor knows exactly what the prognosis is. My husband is 56. He is young to get this. You are too. So we are trying to carry on as normal. We know the future isn’t clear and this b****** pandemic isn’t helping but we are planning our future, tweaking our wills and getting special requests out in the open.
I am going to be here for a good few years yet.
User
Hi rrworkshop
Sorry to hear you're struggling. We are looking at worst case scenario, G10 and spread to lymph nodes and bones. We are in a similar position to yourself in terms of our ages and children. Husband was diagnosed in March last year and has had chemo and radiotherapy through lockdown.
I recognise what Dave642diag2018 says that after about a year you get used to a new normal. I think I cried everyday until a few weeks ago. You will see from my earlier posts that the pca just immediately destroyed what was an absolutely perfect life and I think we both withdrew into ourselves and away from each other. I was very down. Lockdown has been difficult because we've been in a house with two teenagers and it's very difficult to discuss anything meaningful with each other.
However, I'm in a much more positive place now and so is my oh. A few weeks ago we actually managed to be on our own for a few hours and had very much needed heart to heart. It was heartbreaking hearing my dear oh so upset and saying how much he just wanted to enjoy whatever time he had left. We have not had a prognosis. I think I had been dwelling too much on what we had lost - I can't do anything about it and needed to pull my boots up and get on with living for us. Not easy at all and I think it just takes time. You've had a massive shock.
My oh has a low PSA now and is in generally good health. We are in a good place and are lucky that we are with our soulmate. We have laughed a lot in recent weeks - it's very cathartic - and long may it continue.
If you ever want to discuss I'm happy to be PM'd on this forum if you think it may help. I often think a separate partners forum would be a good idea. I suppose in normal times I'd just go the the pub and pour my heart out to my friends!
User
Forgot to say Skye28, would be very happy for you to PM me when you have a moment,
Rachel
User
Dear Jess,
I so feel for you, those first few weeks are incredibly hard. It does get better, I promise. We have both had days/nights of crying and endless worry about what the future holds, but now that the treatment seems to be working (He's on hormone injections and Enzalutamide), we are feeling more positive and trying to enjoy whatever time we have. I refuse to give up hope that he will keep going for many years. Things are changing all the time with new treatments. It has changed our lives irrevocably but he's still here and I am appreciating every moment far more than I ever did before. This site is invaluable for info about treatments or just a place to be honest about your feelings.
Take care and I really hope the blood transfusion goes well and that things improve - keep us posted
Rachel x
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Hi, I'm sorry I don't know what to say really except sorry. I noticed there were no replies so thought I'd bring it up the list. How people react to treatment appears to differ by case and some last a lot longer than others, over 10 years. Some find treatments that suit them better. New treatments appear. Some try different diets and others say it makes little difference.
You've already been through this once so know more than me. My own opinion is taking anything to extreme probably won't help and when I worry I find alcohol makes it worse. Being in lockdown and winter doesn't help I'm sure. Speaking as the male I've hardly talked about it except to make sure she knows as much as me, as I know my wife worries without telling me. Seeing her worry makes me worse. Although I'm undetectable so there isn't much to say on the subject now. I hope things balance out a bit for you in the next few weeks, if that's any help at all. Regards Peter
User
Like Peter, I can't really say much. I guess the only thing I can say is that after about a year we all seem to get used to the new normal. So you will be able to get on with enjoying your life together (yes there is that shadow hanging over things but it can just sit at the back of your mind). From what I have heard pancreatic cancer is horrible, well I'm not saying prostate cancer is the opposite of that, but I am saying it is manageable for a long time. I am really surprised at a prognosis of 4.5 years, that is too precise. I'm not an oncologist, but from what I've seen on this forum, no prediction is very reliable until the last few months. All I can suggest is carry on you will start to wake up without a feeling of dread.
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User
Hi , i absolutely feel your pain / fear .We were in this situation just over 5 yrs ago .
Gary’s PSA was 23 ,4+5 Gleason with spread to lymph nodes. He was 55 and I was 52 .The diagnosis was a a complete shell shock ,he never had symptoms until one day he was unable to wee . The hospital and Drs were fantastic and within a few weeks he was on a treatment path , unfortunately it came over the Xmas period so it would have been quicker.
Gary had early chemo ,because that was recommended at that time .He thankfully had few side effects and continued to work throughout.within a few sessions his PSA had come down to undetectable.
Gary is on a trial which involves taking Enzo and Abi ,which has kept his PSA undetectable for nearly 5 yrs .
We never asked or were told about a time scale which I’m thankful for as we’ve managed to keep to a relatively normal life .
Gary still works full time ,at a different pace as he was so active in his work and got a bigger waistline.
There are still lots of things to look forward to ,we’ve welcomed 5 new grandchildren in this time .
This website is full of info so ask away if you need any info or just to get things off your chest .
Best wishes for the future and live life to the full .
Debby x
User
Thanks so much all of you for taking the time to write back. I hope I can be that person for someone else a few years down the line. I showed your replies to my partner and it definitely lifted his spirits. I guess it’s such early days at the moment and we are still adjusting.
we have a meeting with our oncologist tomorrow so hoping his PSA level has gone down.
Thanks again,
Rachel x
User
It sounds as if your husband is doing all the right things. Keeping active is very important on many levels and I can understand your feelings.
What I learned when my husband was going through all his treatments was to stay as positive as he tried to be and to do all that we could while we could. We made some lovely memories together in the almost ten years we had left together - longer than we expected. It was really only the last few weeks that were tough physically and we coped as well as we could . If you want to do something just do it and when we can all go on holiday again do something you have always wanted to do while fit enough to really enjoy it.
Never give up hoping that a new treatment will appear or that he will do well on the treatments he is given. Above all enjoy each others company and keep smiling. Xx
Edited by member 11 Feb 2021 at 19:43
| Reason: Not specified
User
We found out on 16 Jan that my husband had T4n1m1b. He has now been on Enzalutamide for two weeks. A few hot flushes but seems to be ok. Working from home and pacing himself but it is a terrible terrible shock. Those first few weeks are devastating but it does get a little easier because actually everything feels normal. He isn’t in hospital, he doesn’t look very different and yet...
No doctor knows exactly what the prognosis is. My husband is 56. He is young to get this. You are too. So we are trying to carry on as normal. We know the future isn’t clear and this b****** pandemic isn’t helping but we are planning our future, tweaking our wills and getting special requests out in the open.
I am going to be here for a good few years yet.
User
We found out on 16 Jan that my husband had T4n1m1b. He has now been on Enzalutamide for two weeks. A few hot flushes but seems to be ok. Working from home and pacing himself but it is a terrible terrible shock. Those first few weeks are devastating but it does get a little easier because actually everything feels normal. He isn’t in hospital, he doesn’t look very different and yet...
No doctor knows exactly what the prognosis is. My husband is 56. He is young to get this. You are too. So we are trying to carry on as normal. We know the future isn’t clear and this b****** pandemic isn’t helping but we are planning our future, tweaking our wills and getting special requests out in the open.
I am going to be here for a good few years yet.
User
Hi Corrie,
Sounds as though you're in a very similar position to us - same age, same diagnosis. The shock is awful but you're right, everything does feel strangely normal. He's still looking fit and healthy and we have to keep reminding ourselves of this. Feeling a bit more positive this week - we're off for a blood test this afternoon. First PSA result was 177, then went down to 46, so hoping it's going to continue going in this direction for a long while. I'm hoping to be here for a good few years yet too. Keep me posted on how your husband is doing and I wish you all the very best.
Rachel
User
So sorry that you both are here because it is both of you , not just hubby and your thoughts and well-being are both equally important.
i was diagnosed at 49, T4n1m1a, PSA 342, spread to lymph’s only but chest like your oh.
i did ask for prognosis, 2 years, if I was lucky 3 to 4.
like you both no doubt shock and tears.
i had early chemo, radiotherapy ( as my onco said blasting the mother ship may slow PSA increase) , zoladex 3 monthly ( still) and when that lot was not enough started on abiraterone.
that was over 6 years ago now. My 56th birthday in on Sunday, my PSA is 0.1 and has been sub 0.16 for a couple of years now.
latest scans show all tumours shrunk and some now not visible ( cancer is still there though).
why am I lucky to be here still, let’s face it I must have the dodgy something to give me pca relatively young?
all I can tell you is what I do, it may all make no difference or some may, who knows but now I do what I do I am not going to stop, why would I?
firstly, i run, I run lots , currently on day 422 of a daily running streak averaging over 10k a day. I have run ultramarathons all round the world, the Sahara, Cambodia, the arctic etc, last year over 4,000k. I live for the day,eat well, do Chinese medicine, acupuncture, take some supplements and most importantly do everything with a smile.
i wish I didn’t have cancer of course but my life has been the better for it, I never ran much before but now I am insatiable in that area! I am not stressed and have accepted what will be will be but no regrets about how I have spent these 6 years .
its understandable totally where you are now but please focus on the now and enjoy rather than what will be but at an unknown time in the future.
this link is a short video a friend made about me, it starts with people at the end of a 230k mountain race in 35c in Spain being interviewed and just told that I have cancer , hope it inspires you and your husband , make the most of it.
https://vimeo.com/359287991
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi.
Just want to say lots of people here understand how you feel.
My husband is older than yours (I am much younger) and was diagnosed with similar stats to your husband in 2019. Please do take a look at the profile. It took me about 6 months to not 'think about it all the time' but it will come for you too.
He was also given similar prognosis and every day, week, month that goes by I do occasionally panic and think we are running out of time, I haven't found a strategy to help me with those thoughts.
You have done the best thing in joining the forum, there's so much help and advice here.
The first post I ever read was by I-run and and it dawned on me that we may get a few years yet. His story is so inspiring. Ironically the second post I read was by Merrivale who also has a positive story with her husbands treatment.
Best wishes and good luck to you both. X
Edited by member 18 Feb 2021 at 08:44
| Reason: Not specified
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User
Thanks again for the recent posts, really helped me to feel more positive. We're both running every other day - only 5k but 7k at weekends plus lifting weights just for 30 mins every night. i'm sure that's helping his mental as well as physical health. Irun, you're a complete inspiration: I don't know how you do it!
On a positive note after 4 weeks on Enzalutamide his PSA is now 4.84 (from 177), so def going the right way. He's also been chosen to have his prostate frozen on the Atlanta trial and apparently lymph nodes too. Sounds very interesting and he's feeling very lucky not to have just been in the control group.
I guess like all of you we have good days and bad days. Yesterday was pretty bleak - he'd seen a friend who also has Pca (he's older-72 and has spread to bones) who wasn't looking very well and I think it haunted him that one day that would be him, perhaps sooner rather than later. He couldn't get it out of his head, but I am learning that I can't fix everything and sometimes I just have to let him feel that way and listen. Today much better, laughing and joking and being the generally lovely guy he usually is.
I guess all of us here are hoping for a miracle, I feel so cheated of the 20 plus years I thought we would have but need to get my head around making the best of whatever time there is left. I'm looking forward to the day when I don't think about it all the time.
Thanks again everyone,
Rachel
User
Hi Rachel,
Cheated is how I feel too. Husband has the same Gleason score of 9 and we have no reason to think it’s not going to work. Blood test in a couple of weeks will tell us.
What is the Atlanta trial?
User
Hi Corrie,
Yes, I’m trying to just appreciate the time we have left but finding it very hard. I know he is too. Am hoping it will get easier for us both.
Best of luck with results. Keep us posted. Here is link to Atlanta trial. They are still taking people on. Let me know how you get on.
Happy to answer any questions you have about it if you want to message me.
http://imperialprostate.org.uk/atlanta/
Best
Rachel
User
Hi rrworkshop
Sorry to hear you're struggling. We are looking at worst case scenario, G10 and spread to lymph nodes and bones. We are in a similar position to yourself in terms of our ages and children. Husband was diagnosed in March last year and has had chemo and radiotherapy through lockdown.
I recognise what Dave642diag2018 says that after about a year you get used to a new normal. I think I cried everyday until a few weeks ago. You will see from my earlier posts that the pca just immediately destroyed what was an absolutely perfect life and I think we both withdrew into ourselves and away from each other. I was very down. Lockdown has been difficult because we've been in a house with two teenagers and it's very difficult to discuss anything meaningful with each other.
However, I'm in a much more positive place now and so is my oh. A few weeks ago we actually managed to be on our own for a few hours and had very much needed heart to heart. It was heartbreaking hearing my dear oh so upset and saying how much he just wanted to enjoy whatever time he had left. We have not had a prognosis. I think I had been dwelling too much on what we had lost - I can't do anything about it and needed to pull my boots up and get on with living for us. Not easy at all and I think it just takes time. You've had a massive shock.
My oh has a low PSA now and is in generally good health. We are in a good place and are lucky that we are with our soulmate. We have laughed a lot in recent weeks - it's very cathartic - and long may it continue.
If you ever want to discuss I'm happy to be PM'd on this forum if you think it may help. I often think a separate partners forum would be a good idea. I suppose in normal times I'd just go the the pub and pour my heart out to my friends!
User
Hi Rachel
I know how you feel.My partner was diagnosed a year ago and I still feel devastated.We have only been together 9 years.I tried to pm you before but it wouldn’t let me because I do not post on the site enough 😂
Edited by member 25 Feb 2021 at 16:28
| Reason: Not specified
User
Hi Rachel and Caz P,
There are so many of us here in the same boat, my husbands was also a shock diagnosis - was having a CT scan for something else and they saw it. Already advanced by that stage.
I have all the same feelings you both describe, this forum though is fantastic, I am so glad I found it.
Best wishes
Edited by member 26 Feb 2021 at 08:34
| Reason: Not specified
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User
Sorry to hear you are going through the same thing Caz. Yes I can’t private message either, don’t know how many conversations you have to be a part of before that’s allowed...And Mrs Mas, I agree, this forum is a lifesaver.
User
Thanks Rachel and Mrs Mas for your replies.It still is such a shock my partner was 52 on diagnosis and we found out day before his dads funeral and two weeks after I had the 3 year all clear for rectal cancer.Partner only went to gp as had one episode of peeing blood .The prostate cancer had spread to the bladder that’s what caused the bleeding. Was a right whirlwind of tests etc
User
Goodness, you've been through so much Caz, I'm so sorry. It's amazing how many younger men seem to be affected by this horrible disease.
User
Forgot to say Skye28, would be very happy for you to PM me when you have a moment,
Rachel
User
Hi - I have sent PM but not sure if you can see it as a new member?
User
Hi All,
I thought I would check back in. Husband has been on enzalutamide for over a month now. We are waiting for a very recent blood test result to show whether it has worked on his PSA which was 136. He is stage 4 and its spread to his lymph nodes and bones. Bearing in mind everything he is not doing too badly at all, he has completely changed his diet and is exercising everyday without fail. Still working but from home in a role where you do need to be switched on. I think working is making a real difference to his mental health.
Does anyone know the success rate when a man takes enzalutamide? I believe it works for most men but most men of his age dont have T4 metastatic cancer so stats arent the be all and end all of everything. He could move onto chemo of course but really trying to avoid that. He might need to go onto statins as his blood pressure is high and he has an appt with the Doctor tomorrow.
We are SO looking forward to the end of this lockdown and moving forward. It is so so depressing at present. Would love to think we could have a few holidays over the summer (not UK!)
User
Hi there,
My partner is about a month ahead of yours. Stage 4 spread to distant lymph nodes below chest. Initial PSA was 177. He started Enzalutamide on Jan 21st and PSA 3 weeks ago was 4.84, so definitely working. Next blood test March 15th so will let you know. Blood pressure rise is i think a fairly common side-effect, unfortunately.
Sounds as though he is doing all the right things re: diet and exercise: that's really impressive. Let us know how he gets on and hope this helps.
User
Just a quick update. Husband has been on Enza since end of Jan 21. His PSA score was 136. Its now 0.25 which is really really good news.
Could anyone say what the stats are for how long Enza works to surpress the spread of the cancer. He has a T4 diagnosis with a Gleason score of 9.
User
It doesn't work like that Corrie - there are no stats. Usually, enza is given to a man once his hormone treatment has failed and the research data suggests that on average it gives a man who is castrate resistant an extra 12 months (although the range was 3 months to many years). There is no data for your situation as it is a new strategy introduced since the pandemic struck.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thank you. I thought that might be the case. He has I guess done it a different way round to normal due to Covid. He is having little side effects but something is working.
I notice on this forum as well that some people dont want a prognosis or stats. It is what is is and as it affects us all differently stats can be meaningless.
User
Dear Rachel
i only joined this page today and absolutely understand how you feel. My darling husband got diagnosed three weeks ago with a PSA of 3500 he has bone metastasis and lymph nodes and god knows what else. We have been called tonight they are arranging a blood transfusion for him after the weekend. I am trying to be positive and strong for the kids and him but inside I have fallen apart I’m scared to close my eyes at night for the three hours that I sleep and I long for the bird song so I can get up but it’s only to face another day. I cry for my old life and I honestly don’t know where it is all going to end I have dark moments like you. But we are in it now and there’s no going forward. Keep your chin up you aren’t alone x
User
Dear Jess,
I so feel for you, those first few weeks are incredibly hard. It does get better, I promise. We have both had days/nights of crying and endless worry about what the future holds, but now that the treatment seems to be working (He's on hormone injections and Enzalutamide), we are feeling more positive and trying to enjoy whatever time we have. I refuse to give up hope that he will keep going for many years. Things are changing all the time with new treatments. It has changed our lives irrevocably but he's still here and I am appreciating every moment far more than I ever did before. This site is invaluable for info about treatments or just a place to be honest about your feelings.
Take care and I really hope the blood transfusion goes well and that things improve - keep us posted
Rachel x