I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Anyone with similar stats?

User
Posted 15 Mar 2024 at 13:58

I was diagnosed with Prostate cancer in February 2022, T3B N1 M0. Gleason 8,PSA 252.

 

I’ve had 6 chemotherapy sessions and 37 radiotherapy sessions. I’m also on hormone therapy.

 

First PSA test after completion of treatment 2.1

 

Second test four months later 0.5

 

Third test 0.2

 

My fourth test is in March

 

The March results have just come in at less than 0.1 which is quite a relief.

 

The real issue is what happens to the PSA in years time when I come off ADT.

 

Given what I presented with,I’m not holding out much hope but at least I am okay for now.

User
Posted 16 Mar 2024 at 14:33

Originally Posted by: Online Community Member
Hi Roger,

On the keep fit front see if your NHS is running any Healthy And Rehabilitation Program ( H.A.R.P ) in conjunction with a local sports centre. I have been attending one for nine months or so. It is specifically designed for people recovering from Heart Ops, cancer etc. You must be referred by a G.P, healthcare professional or you can try a self referral. I have found it to be at the right level for me as I had lost quite a lot of leg muscle mass ( I don’t think it was anything to do with my cancer ) and that has come back. It should be carried out by a gym instructor who has had the appropriate training.I should probably tell you this was through NHS Scotland, however I think there are similar schemes around the country.
Rgds
Dave

We have a cancer specific one in Fife, meets weekly. You can self refer but Maggies did it for me. It’s really good…I call it the coffee club because we all go for a coffee and a chat afterwards. Gives you a chance to meet others with different cancers, I find it quite sad the number of young women there who’ve been through cancer.

I take my hat off to you guys going through this advanced  treatment, I find you inspirational and I only hope I can stay as strong and positive as you should I ever be in the same position.

Derek

User
Posted 15 Mar 2024 at 20:53

Hi Roger,

There is always ‘hope’ but I know it’s difficult at times.

Your PSA results are good so try and concentrate on that and get on with enjoying your life as best you can.

All of us(including me!) worry about what happens when we come off the ‘poison’. What keeps me going is having as much fun as possible and being good to myself and those closest to me. Maggies has also been an immense support to me in giving me a reason to live my life.

All the best,

Derek

User
Posted 15 Mar 2024 at 21:20

I'm not the same diagnosis or treatment as you, so I can't directly compare.

All the treatments, HT, CT, and RT have an impact on the PSA, and it's difficult to see which is contributing how much.

The HT is usually the predominant contributor initially, and might even mask the effect of the others. A PSA reduction of 10x in 3 months is quite typical. This reduction will bottom out at some point.

I'm not so familiar with chemo. PSA should be lower at the end, but it can cause PSA to rise during the first few sessions. I would not be surprised if the HT completely masks this with up-front chemo.

RT usually halves or quarters PSA soon after the treatment finishes, but continues to have a reducing effect for up to 3 years, although again this will be masked by the HT. RT doesn't immediately kill all the cancer cells, but you hope it damages them enough that they can no longer reproduce, so the cancer is no longer malignant. Those remaining cancer cells then die of old age over about 3 years (and the HT helps keep them dormant during that time). During this time while the cells are dying, PSA drops slowly, but you can get PSA bounces which we think are periods of high activity by the immune system mopping up the cancer cells. However, this isn't usually visible if you are on HT at that time as HT masks it. The RT reduction is the long term effect you hope to see after the HT wears off.

When the HT wears off and your Testosterone returns, your PSA will rise, because you still have a prostate and it will still have non-cancer cells in it which produce PSA. (The RT aims to only kill the cancer cells, not the whole prostate.) You are considered OK if the PSA doesn't rise more than 2.0 above your lowest reading (i.e. if 0.1 is your lowest reading, you're OK unless it rises above 2.1).

The RT and CT also help to mop up micro-mets - any mets which were too small to show on scans including any which were out of the RT treatment field. Exactly how this works isn't known for sure, but if you take out the mothership cancer, and you do systemic treatment (HT and/or CT), the stats would suggest micro-mets are likely to die too, as they may have been relying on signalling/chemicals from the large tumours which they were too small to make themselves.

Wishing you all the best.

Edited by member 15 Mar 2024 at 22:38  | Reason: Not specified

User
Posted 15 Mar 2024 at 13:58

I was diagnosed with Prostate cancer in February 2022, T3B N1 M0. Gleason 8,PSA 252.

 

I’ve had 6 chemotherapy sessions and 37 radiotherapy sessions. I’m also on hormone therapy.

 

First PSA test after completion of treatment 2.1

 

Second test four months later 0.5

 

Third test 0.2

 

My fourth test is in March

 

The March results have just come in at less than 0.1 which is quite a relief.

 

The real issue is what happens to the PSA in years time when I come off ADT.

 

Given what I presented with,I’m not holding out much hope but at least I am okay for now.

User
Posted 15 Mar 2024 at 21:47

I’m on Decapeptyl and I’m in good shape if you exclude the fact that I may be dying.

I’ve been weight training since I was 13 and I still manage to do a bit once a week, in the hope that it slows down the inevitable muscle atrophy.

 

User
Posted 15 Mar 2024 at 22:51

No one can make any promises of course, but you would probably live 5 years even if you hadn't had the curative part of your treatment (the RT), so I'd be optimistic for longer than that.

Based on the advances over the last 5 years, if you do still need treatment in 5 years time, it will likely include a treatment which doesn't even exist yet.

User
Posted 16 Mar 2024 at 08:06

Thanks for that Peter,I will put a little more detail in my profile.Its great to hear of other peoples experiences.

User
Posted 16 Mar 2024 at 11:50
Hi Roger,

On the keep fit front see if your NHS is running any Healthy And Rehabilitation Program ( H.A.R.P ) in conjunction with a local sports centre. I have been attending one for nine months or so. It is specifically designed for people recovering from Heart Ops, cancer etc. You must be referred by a G.P, healthcare professional or you can try a self referral. I have found it to be at the right level for me as I had lost quite a lot of leg muscle mass ( I don’t think it was anything to do with my cancer ) and that has come back. It should be carried out by a gym instructor who has had the appropriate training.I should probably tell you this was through NHS Scotland, however I think there are similar schemes around the country.

Rgds

Dave

Show Most Thanked Posts
User
Posted 15 Mar 2024 at 20:53

Hi Roger,

There is always ‘hope’ but I know it’s difficult at times.

Your PSA results are good so try and concentrate on that and get on with enjoying your life as best you can.

All of us(including me!) worry about what happens when we come off the ‘poison’. What keeps me going is having as much fun as possible and being good to myself and those closest to me. Maggies has also been an immense support to me in giving me a reason to live my life.

All the best,

Derek

User
Posted 15 Mar 2024 at 21:20

I'm not the same diagnosis or treatment as you, so I can't directly compare.

All the treatments, HT, CT, and RT have an impact on the PSA, and it's difficult to see which is contributing how much.

The HT is usually the predominant contributor initially, and might even mask the effect of the others. A PSA reduction of 10x in 3 months is quite typical. This reduction will bottom out at some point.

I'm not so familiar with chemo. PSA should be lower at the end, but it can cause PSA to rise during the first few sessions. I would not be surprised if the HT completely masks this with up-front chemo.

RT usually halves or quarters PSA soon after the treatment finishes, but continues to have a reducing effect for up to 3 years, although again this will be masked by the HT. RT doesn't immediately kill all the cancer cells, but you hope it damages them enough that they can no longer reproduce, so the cancer is no longer malignant. Those remaining cancer cells then die of old age over about 3 years (and the HT helps keep them dormant during that time). During this time while the cells are dying, PSA drops slowly, but you can get PSA bounces which we think are periods of high activity by the immune system mopping up the cancer cells. However, this isn't usually visible if you are on HT at that time as HT masks it. The RT reduction is the long term effect you hope to see after the HT wears off.

When the HT wears off and your Testosterone returns, your PSA will rise, because you still have a prostate and it will still have non-cancer cells in it which produce PSA. (The RT aims to only kill the cancer cells, not the whole prostate.) You are considered OK if the PSA doesn't rise more than 2.0 above your lowest reading (i.e. if 0.1 is your lowest reading, you're OK unless it rises above 2.1).

The RT and CT also help to mop up micro-mets - any mets which were too small to show on scans including any which were out of the RT treatment field. Exactly how this works isn't known for sure, but if you take out the mothership cancer, and you do systemic treatment (HT and/or CT), the stats would suggest micro-mets are likely to die too, as they may have been relying on signalling/chemicals from the large tumours which they were too small to make themselves.

Wishing you all the best.

Edited by member 15 Mar 2024 at 22:38  | Reason: Not specified

User
Posted 15 Mar 2024 at 21:35

Hi Roger,

At the moment it's doing very well.   

They've given you 2 intensive treatments, chemo and RT, which could indicate they think there is hope. 

I recall a nurse saying to me in the early days I shouldn't get ahead of myself on what might happen, it's easy to say maybe but I found it helped a bit.

I don't know if you think about your lifestyle or if you think it could be better as being in good condition can help.

There isn't much on your profile, such as the type of hormones or when you started.  That can be useful for anyone commenting.

All the best, Peter

User
Posted 15 Mar 2024 at 21:37

Thank you so much for that Andy, it has helped me understand my situation a great deal better.

I live in hope that I have five years left, after that it will be a bonus.

 

User
Posted 15 Mar 2024 at 21:47

I’m on Decapeptyl and I’m in good shape if you exclude the fact that I may be dying.

I’ve been weight training since I was 13 and I still manage to do a bit once a week, in the hope that it slows down the inevitable muscle atrophy.

 

User
Posted 15 Mar 2024 at 22:51

No one can make any promises of course, but you would probably live 5 years even if you hadn't had the curative part of your treatment (the RT), so I'd be optimistic for longer than that.

Based on the advances over the last 5 years, if you do still need treatment in 5 years time, it will likely include a treatment which doesn't even exist yet.

User
Posted 16 Mar 2024 at 08:02

That’s very encouraging news!

You have given me hope, so thank you for that Andy.

User
Posted 16 Mar 2024 at 08:06

Thanks for that Peter,I will put a little more detail in my profile.Its great to hear of other peoples experiences.

User
Posted 16 Mar 2024 at 11:50
Hi Roger,

On the keep fit front see if your NHS is running any Healthy And Rehabilitation Program ( H.A.R.P ) in conjunction with a local sports centre. I have been attending one for nine months or so. It is specifically designed for people recovering from Heart Ops, cancer etc. You must be referred by a G.P, healthcare professional or you can try a self referral. I have found it to be at the right level for me as I had lost quite a lot of leg muscle mass ( I don’t think it was anything to do with my cancer ) and that has come back. It should be carried out by a gym instructor who has had the appropriate training.I should probably tell you this was through NHS Scotland, however I think there are similar schemes around the country.

Rgds

Dave

User
Posted 16 Mar 2024 at 12:07

Thanks for that Dave, I will definitely look into it.

 

User
Posted 16 Mar 2024 at 14:33

Originally Posted by: Online Community Member
Hi Roger,

On the keep fit front see if your NHS is running any Healthy And Rehabilitation Program ( H.A.R.P ) in conjunction with a local sports centre. I have been attending one for nine months or so. It is specifically designed for people recovering from Heart Ops, cancer etc. You must be referred by a G.P, healthcare professional or you can try a self referral. I have found it to be at the right level for me as I had lost quite a lot of leg muscle mass ( I don’t think it was anything to do with my cancer ) and that has come back. It should be carried out by a gym instructor who has had the appropriate training.I should probably tell you this was through NHS Scotland, however I think there are similar schemes around the country.
Rgds
Dave

We have a cancer specific one in Fife, meets weekly. You can self refer but Maggies did it for me. It’s really good…I call it the coffee club because we all go for a coffee and a chat afterwards. Gives you a chance to meet others with different cancers, I find it quite sad the number of young women there who’ve been through cancer.

I take my hat off to you guys going through this advanced  treatment, I find you inspirational and I only hope I can stay as strong and positive as you should I ever be in the same position.

Derek

User
Posted 21 Mar 2024 at 02:42

Hi Andy (and Roger),

I was diagnosed late last year PSA 95, T3cN1M0 gleeson 8. Been on HT for 4 months, started Doxatel mid-Jan and am on cycle 4 of 6. What you said about spike on chemo particularly interested me Andy as just prior to chemo PSA drop to 54, ahead of second chemo 35, then past two results 65 then 85. Onc suggested more chemo (10 cycles!) then consulted and it’s CT plus testosterone along with other bloods. Worried about spread and castration resistance but could be normal? 

RT was next up so hoping to get where’s you are Andy. Best of luck mate.

 

Justin 

 

 
Forum Jump  
©2024 Prostate Cancer UK