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User
Posted 23 Feb 2024 at 17:26

Hi

I have been hovering on this community a while now reading various topics - some of which have terrified me!

My husband was diagnosed with advanced prostate cancer last August - just after we got married after 7 years together!

His initial PSA was 67 (July 2023) with a repeat after seeing the Urologist in August of 73. Recent PSA in December down to 3.7.

He had had a bone scan which showed mets at T8 and the left acetabulum.  The radiologist looked at a CT scan he had had in November 2022 for a thymoma (benign and removed June 2023) and saw scerlotic focus at T8 consistent with the new CT. (shame nobody picked up on it then). He had an MRI as well.

It was then stated on a report we saw - CT CAP - T4 (bladder) Ni M1b.  Not really sure what that means?

He was started on Enzalutamide and Goserelin implants every 12 weeks.

He had a biopsy and this confirmed the cancer with a Gleason score of 4 + 4.

When he saw the Oncologist for the first time in November and we were told that there were extensive lymph nodes affected all across the pelvis.

Max doesn't ask any questions and his way of dealing with it is to just ignore it and carry on as normal.  He goes to all his appts and does exactly what the doctors say but doesn't want to read about it and certainly wouldn't go on this community.

I on the other hand want to know exactly what is going on but it is difficult to ask too much when we see the Oncologist.  I just want to know if he is getting the correct treatment and what the future might hold? I know no-one knows for sure but we are great travellers since retiring as teachers and I am a bit wary of planning too far ahead.  Max needs things to look forward to so at the moment we are booked up for the next 12 months!

I did ask the Oncologist if Radiotherapy would be an option and she said it could be at some point (presumably for the bony mets?).  There was no mention of chemotherapy.  Fortunately at the moment Max has no pain and very few symptoms - just a bit of tiredness probably from the medication.  The Oncologist did say that he could probably only be on Enzaluatimde for 15-18 months but we don't know what happens then? Max of course won't ask! I fully understand that that is his way of dealing with his diagnosis - he has told none of his friends, only the immediate family.  

My question is - what does all this mean?

Thanks so much for any advice/insight.

Linda

 

User
Posted 23 Feb 2024 at 18:59

Hi Linda,

There are people with much more knowledge than me to advise you on what all this means so I will just give your post a little nudge up the rankings. What I would say is that everyone deals with a cancer diagnosis in their own way, and if your husband wants to carry on as normal then it’s right I think to respect that. And if he’s doing what he’s being told by his team that’s the most important thing.
It’s a shame though as there is support out there…have you thought about going along to a local support group yourself? Funnily enough at my Maggies meeting today we were discussing the ‘Family and Friends Support Group’, and there’s no reason why you can’t go along to that or just turn up and speak to one of their councillors on your own.

I wish you both well on this journey.

Derek

User
Posted 23 Feb 2024 at 19:15

T4 (bladder) Ni M1b, I suspect the Ni should be N1. Well that means it has grown from the prostate to the bladder, it's in the lymph nodes (N1) and the bones (M1b). From the rest of your post you probably knew all that.

I guess you really want to know, what is his life expectancy and his quality of life going to be? That is impossible to answer. I can think of a couple of threads which have started similar to yours and within a year or two things have progressed fast and in a bad way. There are also a couple of poster on here who have been around for getting on to two decades despite an inauspicious start and are doing well.

One good thing I will say for Max is that between his CT scan in Nov 2022 and his MRI in July 2023 it doesn't sound like much had changed, so maybe this was not advancing very fast. Now he is on treatment, it is probably not advancing at all. On average the treatment will probably be effective for about five years, but with a reasonable chance of it being a lot shorter or a lot longer.

The only sensible advice for anyone whether they have cancer or not is live life to the full in the here and now.

Dave

User
Posted 25 Feb 2024 at 07:56

H Linda

When diagnosed(nearly 2 years ago now)my oncologist handed me to pieces of paper with 2 options enza & chemo,when I asked her for her advice on which one to take she replied "I advice you and your wife to go out and discuss it between you!!",I thought this was a heartless response and got us off on the wrong foot with my oncologist but things have got better since.

I opted for enza as the impact on my QOL would not have been so impacted and my my wife had seen to much bad stuff with chemo with her mom and auntie,to be fair looking back chemo is basically been like being on enza for me... isn't enza chemo anyway but in tablet form?I managed to get around 18months out of those 4 little tablets and I'm grateful for that.

Moving on I'm 3 cycles done and 3 to do, oncology appointment arranged for day after my next cycle so I I'm hoping it's working I'm also hoping that I'm able to repeat the course again when the time comes but I'm not sure if this can be done.

Regards phil

 

User
Posted 25 Feb 2024 at 08:08

Originally Posted by: Online Community Member

I opted for enza as the impact on my QOL would not have been so impacted and my my wife had seen to much bad stuff with chemo with her mom and auntie,to be fair looking back chemo is basically been like being on enza for me... isn't enza chemo anyway but in tablet form?I managed to get around 18months out of those 4 little tablets and I'm grateful for that.

 

Enzalutamide isn’t chemotherapy, it blocks testosterone reaching the cancer, so it’s another type of hormone therapy.

I have read of men having chemo for prostate cancer and continuing to work and having hardly any side effects. I don’t think it’s as bad as some chemos. It seems reading in these forums that the side effects of enza are worse. But I guess these things affect people differently. My husband is getting a lot of headaches and feels muzzy all the time on enza. But we will never know how he would have reacted to chemo  

 

 

 

 

 

 

 

User
Posted 24 Feb 2024 at 08:25

Hi

Please read my profile for a date by date update of my condition,I'm on a similar journey to what your husband will be going on.

I hope it helps regards Phil 

User
Posted 24 Feb 2024 at 09:30

Thanks Phil

I had read your profile before but re-read it. You are much younger than Max - he is 70 but like you he tries to keep fit and has lost quite a bit of weight. The GP frightened the life out of him when blood tests showed he was pre-diabetic! He doesn’t want that on top of the cancer, high blood pressure and recently developed atrial fibrillation.

you seem to have done well with the Enzalutamide but sorry you now have to have chemo. Is that the usual next step? I know you have had complications with your kidneys as well. So unlucky as you are a young man! 
I know everyone is keeping their fingers crossed that the chemo works and you don’t have too many side effects. We all have to stay positive and just take each step at a time.

Good luck and thanks for sharing your story.

Linda

User
Posted 24 Feb 2024 at 10:56

Dh was diagnosed 9 years ago and treated. But now we find it has been in the lymph nodes all along. Laying dormant or whatever it does as psa was very low for years. Anyway…we’ve never seen the consultant face to face. It’s always on the phone. He put dh on the zoledex the same as your husband and 2 months later onto enzalutamide. Both have brought the psa down low. I have read these drugs can work for 6 months or 10 years plus. No one can tell how long they will work for each person. But realistically probably more like 3-4 years. 

The consultant did say most people in dh’s position would have had chemotherapy at this point . But as he has the brca2 gene it isn’t an option, as it won’t be effective. It might be an option for your dh though. I have no idea what the difference is between holding these things off or giving  them early on. But dh would have had chemo if it were an option. He’s only got cancer in the lymph nodes, nothing in his prostate or bones. Mine is the same as yours and won’t read up on any of it, he doesn’t want to know. His original consultant played it all down, asked how old dh’s parents lived to, dh told him 89 and 93 he said oh you’ve got years ahead of you than. Yet the new consultant said an average of 3-6 years. Slight difference. 

DH just wants to enjoy life and not think of what might happen. He’d like to do trips away etc. though won’t fly. But we have a very reluctant 14 year old. So at the moment we don’t go away. 

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User
Posted 23 Feb 2024 at 18:59

Hi Linda,

There are people with much more knowledge than me to advise you on what all this means so I will just give your post a little nudge up the rankings. What I would say is that everyone deals with a cancer diagnosis in their own way, and if your husband wants to carry on as normal then it’s right I think to respect that. And if he’s doing what he’s being told by his team that’s the most important thing.
It’s a shame though as there is support out there…have you thought about going along to a local support group yourself? Funnily enough at my Maggies meeting today we were discussing the ‘Family and Friends Support Group’, and there’s no reason why you can’t go along to that or just turn up and speak to one of their councillors on your own.

I wish you both well on this journey.

Derek

User
Posted 23 Feb 2024 at 19:15

T4 (bladder) Ni M1b, I suspect the Ni should be N1. Well that means it has grown from the prostate to the bladder, it's in the lymph nodes (N1) and the bones (M1b). From the rest of your post you probably knew all that.

I guess you really want to know, what is his life expectancy and his quality of life going to be? That is impossible to answer. I can think of a couple of threads which have started similar to yours and within a year or two things have progressed fast and in a bad way. There are also a couple of poster on here who have been around for getting on to two decades despite an inauspicious start and are doing well.

One good thing I will say for Max is that between his CT scan in Nov 2022 and his MRI in July 2023 it doesn't sound like much had changed, so maybe this was not advancing very fast. Now he is on treatment, it is probably not advancing at all. On average the treatment will probably be effective for about five years, but with a reasonable chance of it being a lot shorter or a lot longer.

The only sensible advice for anyone whether they have cancer or not is live life to the full in the here and now.

Dave

User
Posted 24 Feb 2024 at 08:25

Hi

Please read my profile for a date by date update of my condition,I'm on a similar journey to what your husband will be going on.

I hope it helps regards Phil 

User
Posted 24 Feb 2024 at 09:30

Thanks Phil

I had read your profile before but re-read it. You are much younger than Max - he is 70 but like you he tries to keep fit and has lost quite a bit of weight. The GP frightened the life out of him when blood tests showed he was pre-diabetic! He doesn’t want that on top of the cancer, high blood pressure and recently developed atrial fibrillation.

you seem to have done well with the Enzalutamide but sorry you now have to have chemo. Is that the usual next step? I know you have had complications with your kidneys as well. So unlucky as you are a young man! 
I know everyone is keeping their fingers crossed that the chemo works and you don’t have too many side effects. We all have to stay positive and just take each step at a time.

Good luck and thanks for sharing your story.

Linda

User
Posted 24 Feb 2024 at 10:56

Dh was diagnosed 9 years ago and treated. But now we find it has been in the lymph nodes all along. Laying dormant or whatever it does as psa was very low for years. Anyway…we’ve never seen the consultant face to face. It’s always on the phone. He put dh on the zoledex the same as your husband and 2 months later onto enzalutamide. Both have brought the psa down low. I have read these drugs can work for 6 months or 10 years plus. No one can tell how long they will work for each person. But realistically probably more like 3-4 years. 

The consultant did say most people in dh’s position would have had chemotherapy at this point . But as he has the brca2 gene it isn’t an option, as it won’t be effective. It might be an option for your dh though. I have no idea what the difference is between holding these things off or giving  them early on. But dh would have had chemo if it were an option. He’s only got cancer in the lymph nodes, nothing in his prostate or bones. Mine is the same as yours and won’t read up on any of it, he doesn’t want to know. His original consultant played it all down, asked how old dh’s parents lived to, dh told him 89 and 93 he said oh you’ve got years ahead of you than. Yet the new consultant said an average of 3-6 years. Slight difference. 

DH just wants to enjoy life and not think of what might happen. He’d like to do trips away etc. though won’t fly. But we have a very reluctant 14 year old. So at the moment we don’t go away. 

User
Posted 25 Feb 2024 at 07:56

H Linda

When diagnosed(nearly 2 years ago now)my oncologist handed me to pieces of paper with 2 options enza & chemo,when I asked her for her advice on which one to take she replied "I advice you and your wife to go out and discuss it between you!!",I thought this was a heartless response and got us off on the wrong foot with my oncologist but things have got better since.

I opted for enza as the impact on my QOL would not have been so impacted and my my wife had seen to much bad stuff with chemo with her mom and auntie,to be fair looking back chemo is basically been like being on enza for me... isn't enza chemo anyway but in tablet form?I managed to get around 18months out of those 4 little tablets and I'm grateful for that.

Moving on I'm 3 cycles done and 3 to do, oncology appointment arranged for day after my next cycle so I I'm hoping it's working I'm also hoping that I'm able to repeat the course again when the time comes but I'm not sure if this can be done.

Regards phil

 

User
Posted 25 Feb 2024 at 08:08

Originally Posted by: Online Community Member

I opted for enza as the impact on my QOL would not have been so impacted and my my wife had seen to much bad stuff with chemo with her mom and auntie,to be fair looking back chemo is basically been like being on enza for me... isn't enza chemo anyway but in tablet form?I managed to get around 18months out of those 4 little tablets and I'm grateful for that.

 

Enzalutamide isn’t chemotherapy, it blocks testosterone reaching the cancer, so it’s another type of hormone therapy.

I have read of men having chemo for prostate cancer and continuing to work and having hardly any side effects. I don’t think it’s as bad as some chemos. It seems reading in these forums that the side effects of enza are worse. But I guess these things affect people differently. My husband is getting a lot of headaches and feels muzzy all the time on enza. But we will never know how he would have reacted to chemo  

 

 

 

 

 

 

 

 
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