Growing bone metastasis with a psa of 0.03

[RickBulldog]

I’ve been diagnosed August 31,2017

Stage 4,gleason 9,psa 64,

4 x bone mets and 1 in lymph node.

Started eligard mis September 2017.

Had 6 sessions of radiotherapy for pain on my shoulder October 2017.

Started 7 sessions of taxotere starting mid october 2017.

April 2018 Started 39 sessions of radio therapy to the prostate and metastasis.

January 2019 did 5 sessions of radiosurgery to the mets.

This past May I had a bone scan which showed one new microscopic bone met and one original bone met that has grown with a psa of 0.03.

Has this happened to any of you and why is this happening.

I’m getting scared…

[Tall_Allen]

Some kinds of PC put out very little PSA. If you can, get that original bone met biopsied. Histology and IHC may provide clues to therapy.

[raoulmaher]

Hi Rick sorry to ask what is concerning you - I have just been diagnosed Stage 4,Gleason 9,psa 41,

2 x bone mets and several in lymph nodes. similar to yourself !

I have been told by the surgeon 5 /6 years and that hormone reduction will take psa down initially then after about 2 years or so the prostate cancer will become resistant to being deprived of testosterone and find an alternative way to grow - your PSA of 0.03 currently looks good and since diagnosis you must be at the 4 year point - am I wrong thinking I would be pleased with your results - I have been told currently that advanced prostate cancer cannot be cured just controlled for a time - there are some exciting developments with MR1 in Cardiff university UK but they are at the start of trials on mice and have a way to go.

Hope this makes sense kindest Raoul UK

[RickBulldog in reply to raoulmaher]

Doctors cannot really tell you how long you have left because everyone is different.It depends alot on how you see it.

If you convince yourself you have 2 years left,in 2 years you’ll be gone.

If you convince yourself you’ll die after 5 years,you’ll die after 5 years.

I’ve read testimonies of men diagnose with stage 4 and mets all over since original diagnosis that are still alive after 10-15 years.

One I’ve read that was diagnosed 22 years before with bone mets all over and when he wrote his testimony had been cancer free for 4 years.

My ex girlfriend,her father was given 3 months to live when they diagnosed him with brain cancer.

He lived for 13 years and could’ve lived longer but didn’t want the chemo.

So I’m keeping hopeful and try to stay optimistic telling myself,if they could do it,so can I.

The power of our will to live can be very powerful.

We mustn’t lose hope,anything is possible.

When ht stops working they have immunotherapy that can work to keep us alive.

There is also a new drug called LU177 that is presently being tested on humans that shows lots promiss for castrate resistant patients.

Anything that can keep us alive longer is good news.

I was 50 when I received this crushing news.

I’m aiming to live till I’m 85.

I might be dreaming but anything is possible

[raoulmaher in reply to RickBulldog]

Thanks for your reply Rick - I don't intend throwing the towel in any time soon and immunotherapy definitely seems to be breaking new ground using the bodies own defence to fight the cancer cells that hide using chemical shields however Keytruda appears to be a good therapy and unhides the cancer cells - I hope that the Cardiff guys get trials soon as all cancers appear to respond to MR1 again allows the cancer cells to be identified however in all people and types ! - kindest Raoul

[Magnus1964]

Has your Oncologist mentioned any ADT drugs? They might help.

[RickBulldog in reply to Magnus1964]

I’ve been on Eliguard since the start

[tom67inMA]

I progressed with PSA <0.01 with a huge tumor in my bladder and mets in my liver. Turned out to be neuroendocrine cancer. A biopsy would be needed to confirm neuroendocrine differentiation. This type puts out no PSA and is insanely aggressive.

[RickBulldog in reply to tom67inMA]

When did you find out ?

[RickBulldog in reply to RickBulldog]

Is there any treatment ?

[tom67inMA in reply to RickBulldog]

I found out when I developed severe abdominal pain from a blocked kidney. Yes there are treatments but after platinum chemo the options aren't great and are largely out of the box. NEPCa has a lot in common with small cell lung cancer, so my current treatment is a very recently approved SCLC treatment that seems to be working while demolishing what was left of my QOL. Since the cancer had moved to my lungs, QOL was always going to suck whether I took treatment or not.