Hi PSA long term survival anyone still here?

[alangeorge]

So is anyone surviving with high PSA or is it really the higher the PSA the shorter survival time? Or have you known anyone who has?

Thanks in advance :))

[RyderLake2]

Hello,

I have written many times on this forum (as have others) that a high initial PSA does not translate into a short life expectancy. My PSA at diagnosis was slightly less than 1700 with extensive bone mets from my neck to my knees. That was seven years and five months ago. My current PSA is 0.044. Everyone is different and everyone responds to treatment differently. Keep battling. Hope that helps!

[alangeorge in reply to RyderLake2]

Yes of course that helps, as all positive stuff does. Can I ask briefly what treatments have you endured?

Thanks

[RyderLake2 in reply to alangeorge]

Hello,

I was on Casodex (bi-calutamide) to start with and to get over the testosterone flare which is common in most agonist type hormone treatments. After a month, I was switched to Zoladex (goserelin acetate) which I have been on for six plus years of the seven plus years since initial diagnosis. I was on Firmagon (degarelix) for a year when my oncologist was trying to lower my PSA with a different drug. When Firmagon didn't have quite the reaction he was looking for, I was switched back to Zoladex and they added Xtandi (enzalutamide). My PSA plummeted and it has stayed low for the last three and a bit years. Other than that I have a maintenance shot of Prolia (denosumab) once every six months for bone strength. The last bone density test I had a few weeks ago showed very little chance of a fracture or Skeletal Related Event (SRE). Very thankful for that. Hope that helps!

[alangeorge in reply to RyderLake2]

Hey thank You so much!

Sorry to be so ignorant, but If the PSA is lowered (like very low) does it actually mean that the Cancer is suppressed or even better? Is it that simple?

[SmpQuindio in reply to RyderLake2]

Hi RyderLake 2, Thanks for your post, You serve as an inspiration that there's a fight to be had, and while never easy , we can outlive our prostate cancer. I had an RP in March 2016 and salvation radiation this year.. my last PSA was 0.15.. (June) and I feel great. Maybe at sometime in the future I will have to go on hormone therapy, if there is a recurrence, but it doesn't scare me when I see men like you who have survived and hopefully feel well. Best of luck keep up the good fight👍

[RyderLake2 in reply to SmpQuindio]

Hello,

I was fortunate enough to meet and be inspired by people who I met along my PCa journey. If I can do the same for people who are following behind me, that makes me happy! We are all in this together.

[DarkEnergy]

Was diagnosed PSA 1000+, with extensive bone metastasis. Currently, PSA <0.02, from 18 months of Lupron and Abiraterone/Prednisone, my Prostate Cancer is hormone sensitive, in just the first week of Bicalutamide, the scans showed significant necrosis from all the metastasis areas.

[alangeorge in reply to DarkEnergy]

so in your case it was all good, what does.. 'my Prostate Cancer is hormone sensitive" mean

Thanks

[DarkEnergy in reply to alangeorge]

So, my scans looked horrible, extensive pelvic metastasis and several tumors were large. In fact, one tumor extended from the prostate gland to block the bladder wall, urinating was brutal, severe pain with blood.

Then, in just a week of taking Bicalutamide (Casodex), the blocking tumor and pelvic metastasis were all transformed into dead tissue (necrosis).

This fast response, with just Bicalutamide (antiandrogen), which blocks cancer cells from feeding on testosterone, meant, "my Prostate Cancer is hormone sensitive". Research has determined that cancer cells from Prostate Gland "mothership", can have different biological characteristics, so a group could be hormone sensitive, while others groups would have a hormone resistant type.

[noahware]

When a man finally does die from his PC, what might his PSA level at the time of death indicate, statistically? This study may not directly answer the question you asked, but it is interesting to consider what is seen when looking backwards from the time of death of men with PC:

"We stratified patients into the following cohorts based on their PSA at death: < 10, 10-100, 100-1000, and > 1000 ng/ml., following a diagnosis of mCRPC. Cohorts of higher PSA level at death were associated with: a lower Gleason score at diagnosis, a longer time to castration resistance, higher burden of metastatic disease at death (non-visceral and visceral), and longer OS in patients with mCRPC..."

ascopubs.org/doi/abs/10.120...

It appears the guys with lower Gleason scores survived longer even as their PSA levels were much higher by the time the disease took their lives, and judging by the mean PSA at time of diagnosis it appears some of these longer-surviving men started with a pretty high PSA.

[DarkEnergy in reply to noahware]

It's the matter of the Prostate Cancer biology, Small Cell or Neuroendocrine types are aggressive types.

(Adenocarcinoma = malignant)

Do a google search for Ductal (aggressive growth) Adenocarcinoma vs Acinar (slower growth) Adenocarcinoma.

The search results are incoherent readings, just an indication of where we're at with PCa research...

[monte1111 in reply to DarkEnergy]

Incoherent readings is right. Every study says more study is needed. We are lucky and have a few here who love incoherent readings and translate them for us. They are priceless.

[Magnus1964]

Depends on your definition of high. I have had PSA readings as high as 130. I don't think I have had a PSA reading lower than 20 for the last 5 years.

[alangeorge in reply to Magnus1964]

Thanks Magnus. So I was 2220 had 3 Zoladex injections 3 months apart came down to PSA 1.0 1.4 & 1.3 over 4 months or so. then nothing for a 11 months now its 120, thats why I ask the question.

[Magnus1964 in reply to alangeorge]

It's time to switch ADT drugs.

[alangeorge in reply to Magnus1964]

Is that what you do when your PSA reading is high?

Thanks

[ctarleton in reply to alangeorge]

See also Chapters 8 & 9 of the NCCN Guidelines for Patients Prostate Cancer, for various approved treatment Options. Discuss with the doctor. Learn about them. Etc.

nccn.org/patients/guideline...

[Magnus1964 in reply to alangeorge]

I do switch ADT drugs. But sometimes you need radiation or immune therapy depending on the situation.

[larry_dammit]

My dad is 89. Been fighting this monster for 20 years. Very high PSA from 1600 down. Up and down like a yo yo. He’s one that will die of something else ,the monster just plays with him. 🙏🙏🙏😜

[alangeorge in reply to larry_dammit]

Hey thanks, good for him. Wow 20 yrs must of had all kinds of treatment or not? Also does he have pain or side effects. I have had no side effects or pain

[6357axbz in reply to larry_dammit]

What was his Gleason? Is he metastatic?

[V10fanatic]

It's all about the Gleasons!

[alangeorge in reply to V10fanatic]

I don't hear much about the Gleasons? Mostly hear about PSA

[DarkEnergy in reply to alangeorge]

So, guess, you're not in the US, as Gleason score is Standard of Care (SOC), a biopsy is always taken and graded.

[alangeorge in reply to DarkEnergy]

So my statement was not clear. No, I am not in the Sates I am NZ. Of course in our SOC we have in Gleason. what i was meaning was that I don't hear much about Gleason being use as a marker or measurement of the cancer.

[DarkEnergy in reply to alangeorge]

I agree, because Gleason score comes from biopsy of the primary tumor in the Prostate Gland. So Gleason scores of 8, 9 and 10 are high risk, meaning metastatic disease. And once metastatic, the war begins...

I could use a flat white...

[ctarleton]

Anecdotally, I had a PSA of 5,006 at original diagnosis. That was 7 years ago next month. With a few treatments and treatment changes since then, my PSA has varied from 1.0 to 95.0 to 1.2 to around 29.0 most recently. Click my User Name for a summary in my Profile.

On the other hand, I have personally known men with lower "numbers" and more treatments in a shorter amount of time who did not do so well, or who have since died.

All in all, having access to doctors who specialize in advanced prostate cancer and who can offer the most proven treatment "options" along the way, is probably one way toward getting a longer overall survival time and hopefully a better quality of life, too.

Living "in the Present moment", when I can do it, also seems to work better for me than ruminating about the "shoulda/coulda/woulda" things in the Past, or worrying and stressing so much about a largely unknowable Future and feared/imagined things that may or may not ever happen in the ways I've feared.

In hindsight, I recall being a little too elated when my PSA numbers went down, and a little too unhappy and fearful as my PSA numbers went up. With advanced disease, the larger overall picture becomes more and more important than just any one PSA number on a piece of paper.

[MRT276]

What is ADT drugs stand for?

[6357axbz in reply to MRT276]

Androgen Deprivation Therapy

[scarlino]

My PSA has been low and it currently is at 490. In Clinical Trial using Keytruda and Olaparib. Since my cancer is metastatic I don’t worry as much about PSA as I do about spread and increasing size. I don’t like my number but it is not a major factor in my overall treatment or attitude.

[alangeorge in reply to scarlino]

Hey Scarlino. That's interesting thanks, so in your how is the tumour size monitored is it by scan or any other method? Where does pain come into it, is it the more pain the worse it it is becoming? I realised we are all all physically different, all our attitudes are different we are mentally different in our approach and thought, our medicines are different, our environment is different. So I realise these are your experiences.

I read about a cancer patient who looked at things with a different attitude seeing the cancer as originally a sick cell that needed healing. So the fight was to heal the sick cell or cells as the case will of become.

Alan G

[scarlino in reply to alangeorge]

Hi Alan,

Scans are how my tumor growth is measured. My cancer when it metastisized was in my lymph nodes. It has moved to my bones and some spots on my liver. As far as physical pain I don’t experience much. I agree we are all different. I have been through quite a few courses of chemo and have not had side effects as hard as some have experienced, mostly fatigue. I wish these things are indicative of Survivability but I know thats not the case. I trust in Gods plan and I have faith in His leading, wherever this takes me. I’d like it to take me to cure, for sure, but I have to accept that may not be the case. Be blessed!

[alangeorge]

Thanks Scarlino I appreciate your caring and sharing. Seems here in NZ they don't give out scans very much. It also seems there might be even less now we have massive debt from our not so kind friend Covid. I really would like to see what my cancer looks like now, or would I/

Thanks

[MEDMEL]

I have Bone Mets so am on 4 of 6 Xofigo injections. PSA is 9000 and makes me very anxious but MO says since I feel OK and I don't have other symptoms it's all relative. He is doing a CT and then I guess I will do another round of chemo unless I can find some sort of trial. So confused but really appreciate all on this forum!

[alangeorge in reply to MEDMEL]

I have Bone Mets so am on 4 of 6 Xofigo injections. PSA is 9000 and makes me very anxious but MO says since I feel OK and I don't have other symptoms it's all relative. He is doing a CT and then I guess I will do another round of chemo unless I can find some sort of trial. So confused but really appreciate all on this forum!

Thanks for the post I like what I have underlined as have never heard that before