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First Bone Met Diagnosed

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User
Posted 04 Feb 2016 at 14:58

Hi Everyone,

In my last post I said my father was suffering pain in his sacrium and surprise surprise it appears he has a bone met on the join between him sacrium and pelvis. He had a bone scan last year which showed some "elevated activity" in the right pelvis. Soon after this bone scan his urologost started him on Prostap3. He has just had a testosterone check which came out at 0.4 which suggests the Prostap is doing its job at least in as far as keepong the testosterone at castrate levels. The pain he seems to be experiencing from the met is more of a nerve nature than actual bone pain, i.e. it doesn't hurt at all at rest but is very mich like psiatica when he moves.

My question is does the appearance of this bone met mean the HT isn't working or is it just that as he has only been on it a short time things are takong time to slow down amd this bone met has grown while the HT has been revving itself up to full effect as it were. Also what is the experoence out there with you guys as to how long people survive from this stage and with what quality of life and what further treatment options are available to extend/improve quality of life.

cheers,

Jess

User
Posted 04 Feb 2016 at 20:44
Hi Jess

I don't think anyone knows the answer to your questions, I guess it depends on how aggressive the cancer actually is and that's something that is very individual. I'm with Simon and junk you simply have to live day by day and not worry about the future too much. My hubby has an aggressive cancer (Gleason 10) but after five years, he's still with us without any further significant spread.

Take care and don't bother with Mr Google.

Love Allison

User
Posted 04 Feb 2016 at 17:50

Just bumping your post for you Jess as I cannot answer your question but I'm sure somebody else can

We can't control the winds - but we can adjust our sails
User
Posted 04 Feb 2016 at 19:08

Hi Jess,

Sorry to see that your fathers cancer has spread, don't bother looking at prognosis on google everything there is out of date.

Since i was diagnosed we now have Abbi, Enzo, Radium and early chemo all of these help.

I was diagnosed over 3 years ago with spread everywhere, i still go jet skiing with the twins horse riding, so don't despair.

I wish your dad all my best wishes on this crap journey

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 Feb 2016 at 22:11

Hi Jess,

If I read your post correctly you are saying that your dad had his bone scan which showed the bone met before he started Prostrap?

In which case it is fair to say the HT may well be working as the cancer had spread to his sacrum / pelvis before he started HT (unless he was already on some other form of HT before the Prostrap?).

The usual way of measuring whether or not the HT is working is to measure PSA, the actual PSA reading is not that important, you need to focus upon the rate at which it is changing, and if your dad has had regular PSA tests the rate at which the PSA reading doubles is the best indicator of the rate at which the cancer is growing, of course it is best of all if his PSA doesn't double very often.

:)

Dave

User
Posted 04 Feb 2016 at 22:35
Hi Jess

I have mets spread to exactly the same area (right pelvic sacrum joint) and have just taken part in a trial called SABR and am the first to undergo this at my hospital it involves high dose RT to the Mets and was over in 3 visits. I will know more as to how effective this has been in March and will report back once I know the outcome.

Roy

User
Posted 05 Feb 2016 at 10:40

Not sure that you can be confident from a PSA test that Dad is at or below castrate level - do you have his most recent testosterone score? It needs to be at or below 0.69 - any more and it could be that the met is still being fed.

Based on the pain dad is describing, it is possible that it isn't directly related to the met affecting nerve endings. As his muscles and ligaments soften or lose bulk, that could also cause sciatic-like pain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 04 Feb 2016 at 17:50

Just bumping your post for you Jess as I cannot answer your question but I'm sure somebody else can

We can't control the winds - but we can adjust our sails
User
Posted 04 Feb 2016 at 19:08

Hi Jess,

Sorry to see that your fathers cancer has spread, don't bother looking at prognosis on google everything there is out of date.

Since i was diagnosed we now have Abbi, Enzo, Radium and early chemo all of these help.

I was diagnosed over 3 years ago with spread everywhere, i still go jet skiing with the twins horse riding, so don't despair.

I wish your dad all my best wishes on this crap journey

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 Feb 2016 at 20:44
Hi Jess

I don't think anyone knows the answer to your questions, I guess it depends on how aggressive the cancer actually is and that's something that is very individual. I'm with Simon and junk you simply have to live day by day and not worry about the future too much. My hubby has an aggressive cancer (Gleason 10) but after five years, he's still with us without any further significant spread.

Take care and don't bother with Mr Google.

Love Allison

User
Posted 04 Feb 2016 at 22:11

Hi Jess,

If I read your post correctly you are saying that your dad had his bone scan which showed the bone met before he started Prostrap?

In which case it is fair to say the HT may well be working as the cancer had spread to his sacrum / pelvis before he started HT (unless he was already on some other form of HT before the Prostrap?).

The usual way of measuring whether or not the HT is working is to measure PSA, the actual PSA reading is not that important, you need to focus upon the rate at which it is changing, and if your dad has had regular PSA tests the rate at which the PSA reading doubles is the best indicator of the rate at which the cancer is growing, of course it is best of all if his PSA doesn't double very often.

:)

Dave

User
Posted 04 Feb 2016 at 22:35
Hi Jess

I have mets spread to exactly the same area (right pelvic sacrum joint) and have just taken part in a trial called SABR and am the first to undergo this at my hospital it involves high dose RT to the Mets and was over in 3 visits. I will know more as to how effective this has been in March and will report back once I know the outcome.

Roy

User
Posted 05 Feb 2016 at 08:30

Hi Dave,

I think you are agreeing with my logic process, but let me try and be a little clearer. What I am saying is the bone scan showed asymptomatic bone mets with my father receiving no treatment at all. The urologist thought at that stage it was time to start HT. My father has been on Prostap for 5 months now and about 4 weeks ago the bone met in his right pelvis became symptomatic. What I am saying is that the Prostrap is probably slowing the growth but as it takes time to work, the non-symptomatic met became symptomatic in this time. The optomistic conclusion being that as the HT becomes ever more effective this symptomatic bone met will stabilise or maybe even get a little better.

I think that is what you were say in your post, but hopefully what I've written here will make more sense and you will be able to tell me if my assumptions are correct or completely off the wall.

Thanks,

Jess

User
Posted 05 Feb 2016 at 10:40

Not sure that you can be confident from a PSA test that Dad is at or below castrate level - do you have his most recent testosterone score? It needs to be at or below 0.69 - any more and it could be that the met is still being fed.

Based on the pain dad is describing, it is possible that it isn't directly related to the met affecting nerve endings. As his muscles and ligaments soften or lose bulk, that could also cause sciatic-like pain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2016 at 15:28

Hi Lyn,

Thanks for that info. That gives me hope. As you can see from the initial post his testosterone is 0.4. I didn't know the magic number was 0.69, so that is great that he is well below it. Do you or does anuone know if HT itself can shrink bone mets or does it only work on the primary. I only ask because my fathers sysmptoms (pain) seem to be subsiding a bit.

Cheers,

Jess

User
Posted 05 Feb 2016 at 16:43

My mistake, I thought you had posted that his PSA was 0.4

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2016 at 17:15
Hi Jess

Yes HT does shrink bone mets as well as the prostate. It's a really good treatment for most men with mets. Glad to hear that dad's pain is a little better.

Love

Allison

User
Posted 05 Feb 2016 at 19:05
Oh thank you so much, Alison. It is so lovely to hear that and its wonderful to be able to talk with people who have been there and know their stuff.

Cheers,

Jess

 
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