Does anyone die of Pca when PSA's und... - Advanced Prostate...

Advanced Prostate Cancer

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Does anyone die of Pca when PSA's under 1000?

Tommyj2 profile image
44 Replies

I feel a little foolish asking this question but with so many here getting advanced treatments with PSA's in the low end I'm wondering how long it takes to get to the upper ranges that appear to be associated with death.... or are PSA's in the thousands not any more associated with death than in lower end.... PSA's here are all over the map .... ARE there numbers ( with mets of course) that are associated with death...??

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Tommyj2 profile image
Tommyj2
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44 Replies
Drcrunch profile image
Drcrunch

I would think that the most lethal prostate cancers have low psa, probably under 10. These are neuroendocrines and small cancers. They attack organs which are vital for life. Visceral metastasis are most cause of death , followed by refractory conditions.(nothing works). I was just reading about that online. Roy White, from Australia, has a psa reaching 14,000 and is still alive.

Drcrunch profile image
Drcrunch in reply toDrcrunch

That is small cell cancers

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply toDrcrunch

Interesting! Can you share a link re: Roy White?

Drcrunch profile image
Drcrunch in reply toHOPEFULSPOUSE

Search yananow. Look for display.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply toDrcrunch

Thank you!

tango65 profile image
tango65

I'll worry more about tumor load (number and extension of bone metastases and visceral metastases) than PSA. Large number of bone metastases will compromise the bone marrow and eventually lead to death. Liver and lung metastases are associated with poor survival. Besides neuroendocrine and small cell prostate cancer a very lethal form of PC express low PSA and PSMA.

Tommyj2 profile image
Tommyj2 in reply totango65

That makes sense... so it would appear that imaging more than PSA is the more accurate way to follow progress or lack of... PSA coming into the mix as a "hopeful" indicator of tx success when it is kept under control or lowered??....ie... psa reduced substantially = ( with luck) better imaging results.

Zetabow profile image
Zetabow in reply totango65

This is bit of a worry for me, started off with Gleason 9, 1386 PSA in Nov it came down quickly (0.18 last week) which I'm happy about. Oncologist gave me 44 months in Nov (gives me hope when I read posters here beating the odds), he said my PET scan shows every bone in my body affected by Mets and got extensively into the Marrow on both Femurs, that is what worries me and I'm assuming this is why he gave me a poorer than statistical prognosis (I'm 56 years), I got the short straw but I'm dealing with it better than I thought.

Just finished Chemo and will have another scan in about 5 weeks, keeping my fingers crossed, Doc is happy with my progress and said he expects to see a good improvement on this scan.

Tommyj2 profile image
Tommyj2 in reply toZetabow

I'm very sorry to hear about your bad luck but heartened at the quick response you appear to be having to Tx.... Hoping your next scans look better...

tango65 profile image
tango65 in reply toZetabow

You had a very good response to the treatment. There are many other possible treatments if chemo fails. Xofigo and the Lu 177 and Ac 225 treatments could be effective in controlling bone metastases as well as lymph node metastases. Best of luck with the scan.

JavaMan profile image
JavaMan in reply toZetabow

Good luck, Zetabow. Draw your strength from where you can. I’ll say a prayer for you.

George71 profile image
George71 in reply toZetabow

have you looked into Lu-177 for bone mets -- and/or immunotherapy

Zetabow profile image
Zetabow in reply toGeorge71

Not yet because the current treatment seems to be working Diphereline injection 3 monthly, Prednisolon and just completed Docetaxel treatment last week. It's early days on my treatment plan so I guess after my scan in a few weeks they will make changes to my treatment if they feel it's required. I'm in Europe so I'm not relying on insurance companies or restricted (too much) by how deep my pockets are.

Jbooml profile image
Jbooml in reply toZetabow

The Harvard boys have claimed that lowering your nadir below .5 is significantly predictive in longer term survival....don’t know if there’s a reliable regressive chart that relates your actual based on that curve below that point.

beatPC profile image
beatPC in reply toZetabow

Wishing you the best of luck. Hope your treatments are successful.

ctarleton profile image
ctarleton

When I was diagnosed as very metastatic with bone and lymph node mets at age 65 in Nov 2013, I was very much alive with a PSA of 5,006. (Click user name to view profile/history.)

Charles

Tommyj2 profile image
Tommyj2 in reply toctarleton

The more I learn about this disease....the more confused I get. NOTHING appears to be standard.... appears that imaging is the best way to get good sense of where one stands in terms of disease progression

407ca profile image
407ca in reply toTommyj2

Tommyj2

Nothing is standard about PCA. Probably one of the more confusing cancers. There is no "best" treatment or approach. This is what makes self education so important.

All the best.

MichaelDD profile image
MichaelDD

Mine was never over 12. Diagnosed in 2016 . Last October metastasized to both lungs.

dockam profile image
dockam

Hey, I had a PSA at 840 at Dx (01/2015)with only mets to the L ureter lymph node chain. So, 15 Taxotere sessions(2015), 30 months ADT and got to 0.1 for three months in 2017. PSA so far still responding to the restart of ADT (had an 18 month holiday) and last month it was 3.8 (from 10.2 in Dec) and T at 17.

My best to y'all - Randy

Mel58 profile image
Mel58

My dads psa was 77 when he passed away last month. The lowest it ever got was 41 after it mestastisized to his bones Jan 2018. It was in his bone marrow by October. They gave him 14 months in January 2018. He got about 16. They said 14 months was the avg lifespan after it gets in ur bones. Do whatever u can to keep it out of ur bones. That’s endgame.

Zetabow profile image
Zetabow in reply toMel58

I'm no expert as it's only been 7 months since diagnosis but what I did pick up from reading some online medical papers is if it's 1000+ PSA and doesn't come below that 1000 mark within the first few months or it gets into the marrow the prognosis is poorer than normal but as this is rare it can be difficult to get a really clear picture having so few patients in this unfortunate situation.

I figured with the statistics of 5 year survival and the event timeline i.e. I'm at the pain stage of my Mets and it's into my bone Marrow I've likely been stage 4 for at least couple of years (my only symptom was pain/fatigue last Summer). I'm mentally prepared for the worst but also ready to fight this as best I can for my 10 and 9 year old boys. What balances the scales for me is I'm fairly young and fit (56 and pro sportsman). My Doc said I'm producing Red/White blood cells and Platelets and not needing blood transfusions anymore, which indicates to me that maybe I've turned it around enough that I can improve on the anticipated poor prognosis from my Oncologist.

Cheerr profile image
Cheerr in reply toZetabow

Hi Zetabow,

I wish you success in the on going treatment.

Since you mentioned the cancer spread into the bone marrow as well, just want to know how are your RBC, WBC and Platelets count now?

Tommyj2 profile image
Tommyj2 in reply toZetabow

Your post came up while I was researching other matters....VERY sorry to hear of your situation... Hope that being fit is helping you with this..... What type pro sportsman are you?? Are you handling ADT well ( presuming you are on it).... Glad that you have a positive " I can fight this " attitude" don't know HOW it helps but it always seems to..... Best of luck...

Bob

j-o-h-n profile image
j-o-h-n in reply toMel58

My condolences Mel..... Hopefully he's learned how to play the harp by now and his wings fit properly. Bless him and you....

j-o-h-n Thursday 05/09/2019 11:12 AM DST

monte1111 profile image
monte1111 in reply toMel58

I am just so sorry to hear about your dad. I've had slight anemia for awhile now, along with the extensive bone mets, so will keep my head up on this. Did not know. Once again so sorry to hear about your dad.

AlanMeyer profile image
AlanMeyer

There are men who were diagnosed with PSA in the thousands that responded well to treatment and are still alive years later. There are also many who died with PSA values below 1,000.

There are many variables in all this. Cancer in the heart, lungs, brain, liver, or other vital organs can be extremely dangerous even though the total quantity is low. Tumors may put out lots of PSA in some men or relatively less in others even though both men have the same weight of tumors. Cancer is like that. It's a disease, like other cancers, that results from mutated DNA, but which genes are mutated and what form the mutations take can vary a great deal from one patient to another.

In spite of the variabilities, PSA is still one indicator of tumor burden. As far as I know, men who succeed in bringing their PSA to very low values with treatment, on average, live longer than men who do not succeed at that.

Hope that helps.

Alan

Tommyj2 profile image
Tommyj2 in reply toAlanMeyer

The more I learn about this disease the less I know. Wish I had spent some time on this forum when I decided how to handle my initial bout with prostate ca. Think I would have gone with the extra Tx that might have given me better odds of a cure...BUT... a lot of the guys here did JUST that and still ended up with recurrence.... I have to remind myself periodically that I am on an advanced Pca forum and to not take the experiences of those here as the norm either.... some people do get treated once and have no recurrence..... Luck of the draw until we know much more about this damnable disease..... constant vigilance from here on out...

Hirsch profile image
Hirsch in reply toTommyj2

You are so perceptive about recurrence. Some guys do everything. RP. Rads. Chemo. Adt. Several years down the line this beast recurs. Not infrequently unpredictable.

whatsinaname profile image
whatsinaname in reply toHirsch

In 14 months, I have done Rads, Chemo, ADT and now LU-177. Forget about the beast recurring. The beast has never left me.

Think I should try EXORCISM ??? :-) The cost of getting a Padre over is minimal compared to any SOC treatment.

Bebby1 profile image
Bebby1

To my knowledge PSA isn’t indicative of impending doom in any way

My husband has had 36 at highest

But has extensive bone and lymph node Mets.

Every APC is individual

Look for other clinical outcomes rather than focusing on the PSA

Good luck

Magnus1964 profile image
Magnus1964

PSA is an indication of Pca. Some cancers give off a lot PSA with only a small number of cells. Others produce a small amount of PSA with a large number of cells. There are a lot of factors involved..

RonnyBaby profile image
RonnyBaby

I know a gentleman with PCa who has had PSA counts into the thousands (12,000+) for years and he is functioning well and feeling fine.

I started above 300+ and am now undetectable at the 2 year point.

Go figure, huh ? .....

j-o-h-n profile image
j-o-h-n

Here's how it goes.....

You ask a woman to pick a number from 1 to 10.

Whatever number she picks you tell her "you lose take your clothes off".

Same works for Pca.

Pick a number form 1 to 1 billion.

CATCH MY DRIFT?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/09/2019 11:21 AM

NWLiving profile image
NWLiving in reply toj-o-h-n

Haha! I shouldn’t laugh, but I did.

AlanMeyer profile image
AlanMeyer in reply toj-o-h-n

Not a bad joke but shouldn't you have said: "you win, take your clothes off"?

j-o-h-n profile image
j-o-h-n in reply toAlanMeyer

If they win then the'll think they have an option....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/09/2019 4:25 PM

Drcrunch profile image
Drcrunch

If your cancer is well differentiated, you get higher psa values. Well differentiated cells mean that the cancer cells look like normal cells to the pathologist.

lincolnj8 profile image
lincolnj8

Mine was at 800 16 months ago. Living almost a normal life. PSA under one now. Not as strong as I once was. But that's OK

tallguy2 profile image
tallguy2

My PSA has never been above 4.5 yet I have been thru much: RP, two rounds of radiation, chemo, and of course ADT. It seems the number of Mets and their location can be a key in all this.

Tommyj2 profile image
Tommyj2 in reply totallguy2

Until I joined this group I felt I knew a bit about Prostate Cancer.... since doing a lot of reading here I feel I can't take ANYTHING as reason to celebrate.... it seems there is always an exception to generally accepted knowledge.... hell..... many guys don't even GET a biopsy until their PSA tops 4.5.... Are you saying that you were/are stage four with a 4.5 psa?? How are you handling ADT??

tallguy2 profile image
tallguy2 in reply toTommyj2

Yes, I had a biopsy as soon as the PSA hit 4.0 (standard procedure, right?). Gleason 9 so I chose the RP. Already too late...Stage 4. We need a way to intercept PCa while it is still encapsulated. The standard PSA “wait until 4.0” failed me. Some of the new MRIs are showing promise.

ADT is OK. I use venlafaxine to combat the hot flashes and sweats.

Best wishes!

Tommyj2 profile image
Tommyj2 in reply totallguy2

REALLY sorry for your bad luck.... hope your treatment is keeping it under control?

tallguy2 profile image
tallguy2 in reply toTommyj2

Yes, thanks, CT scan shows tumors shrinking more after latest round of radiation.

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