HIGH PSA NUMBERS: My PSA has always... - Advanced Prostate...

Advanced Prostate Cancer

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HIGH PSA NUMBERS

Suds4me profile image
53 Replies

My PSA has always been in the 2.0 - 4.0 (estimate range) for years. When I found out I had prostate cancer,my PSA was 8.4. I’ve noticed several on this site reporting that their PSA’s being in the 100’s. Are these different tests or can a PSA go to that range? I’ve never heard or seen PSA numbers being that high......thank you

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Suds4me
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53 Replies

Once the cancer becomes metastatic, that's when you get the really high PSAs which can go into the thousands. If your PSA is over 20, most likely your prostate cancer is metastatic. Under that, it might or might not be.

Imaging is more important than PSA in determining the progression of prostate cancer.

in reply to

Mine was cancerous at 1. tumor out of the prostate at 4.25. Psa means very little for diagnosis..

Zetabow profile image
Zetabow

Mine was 1386, although rare I've heard of much higher numbers

DarkEnergy profile image
DarkEnergy in reply to Zetabow

At DX (09/11/19), MY PSA 1000+, as a newbie, meaning before my research and participating in this forum, I thought this high reading was instant doom!

Moreover, the scans findings, with writings of "significant" metastasis throughout pelvic area - and with coverage throughout the vertebrae, OMG, doom confirmed!

Oh, but, my first doc, a Urologist told me - hey the good news, no tumor findings on the organs, at this time. So, it takes about 10 minutes to drive home from the Urologist's office, after about two hours of driving, started thinking, perhaps I'm a bit distracted at this time, pulled over and got my bearings.

Whimpy-p, formerly Lulu700, knows what followed from this "point in time"...

Today, holding on PSA <0.02, from ADT only treatment, just from Lupron alone, my PSA spiraled down - Zytiga and Taxotere were eventually added.

So, my point, PCa is a product of our unique biological markup with ingredients from our environmental factors. Our PCa treatment can only be individualized, unfortunately, we're still administering the diagnosis like a headache with Aspirin...

LearnAll profile image
LearnAll

Yes. PSA numbers can go to 10,000 in some people. PSA alone does not determine how aggressive the prostate cancer is...there are so many factors you have to put together to know aggressiveness of PCa. Some people have low PSA like 7 or 8 or 10 but still can have aggressive form of PCa. There are people on this forum whose PSA was in thousands and they are still alive after many years. Do Not judge PCa JUST by PSA number !

PSA can rise due to infection, strenuous excercise or even sex.

Zetabow profile image
Zetabow in reply to LearnAll

Sex, what's that lol

pilot52 profile image
pilot52 in reply to Zetabow

I concur......had a pump installed and it works great....at least when I am by the pool I do a 50% inflate and still look 16....from there I go to my room and read Flying .....Blue Skies....

j-o-h-n profile image
j-o-h-n in reply to Zetabow

What are three words you dread the most while having sex?

"Honey, I'm home."

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/04/2020 5:21 PM EST

Tall_Allen profile image
Tall_Allen

I've seen PSA over 10,000.

Bebby1 profile image
Bebby1 in reply to Tall_Allen

I have learned that everybody is individual

But do we know what determines the greater numbers that don’t correlate with Gleason scores?

My husband is Gleason 10

Widespread Mets

But PSA has never been over mid thirty

Stopped all treatment a month ago

We’re at the end of what’s available here

Each drug only effective for 8 months longest

First PSA since stopping will be next week

Interesting that pathology gives “ normal” ranges in most other readings which dictates/ or doesn’t ... any further treatment

Oncologist says don’t look at numbers anymore

Tall_Allen profile image
Tall_Allen in reply to Bebby1

PSA is not strictly correlated with Gleason score - men with predominent pattern 5 may have lower PSA tham men with predominent pattern 4. Some metastases express a lot of PSA, while some express none. Low PSA metastases are often a signal that the cancer is less differentiated (more aggressive).

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Bebby1

I hope you don't mind sharing more detailed info about your husband's journey. Sorry to hear that he stopped treatment and is at the end of what's available.

How long ago was he diagnosed? How old is he? What treatments/drugs did he take, as they were each only effective for up to 8 months? Did he have genetic testing?

Bebby1 profile image
Bebby1 in reply to HopingForTheBest1

Thank you

I have gathered this throughout the 19 months since diagnosis

This site is amazing 🙏🏽

Bebby1 profile image
Bebby1 in reply to HopingForTheBest1

Initially cosudex....combined with Docetaxal

Should have hD 6 rounds

But hospitalised too many times with neutropenia

Had two

Cosudex resistant after about 8 months

On to enzalutamide

Lasted about the same

Genetic testing recently

No BRCA gene

Double edged sword

Great for our children but dashed hopes of the triton3 trial

Gleason 10 stage 4 in initial biopsy results

We are not in a position to travel and trial

Since stopping the last drug

He feels better than he has got so long... side effects are gone

Legs swelling

Pain still manageable

Thank you for taking an interest

Look after yourself 🙏🏽

airmanbear profile image
airmanbear in reply to Bebby1

try fenbendazole

Charlean profile image
Charlean in reply to Bebby1

I haven't been on here in a couple years. My husband passed away 3 years ago. I was on this site all the time while we fought this batter. I made and lost many friends with disease. My husbands PSA was always rather low and his cancer was extremely aggressive. What I noted through all this was..the lower numbered patients often had the most aggressive cancers. Just my observation through it all.

jimbob99999 profile image
jimbob99999 in reply to Tall_Allen

I started at 194 2.5 years ago. Did Casodex, Docitaxel and ADT. I hike about 40 kms a week and did a 800km (500mile) hike in Spain in 2018. My latest PSA is 0.07. I have some side effects from ADT, mostly night sweats etc, but nothing else noteworthy. I have a complex regimen of supplements based in large part on Jane McClelland book.

Five years ago mine was 850. Today it's 0.05. I just finished lifting weights and tomorrow morning I'm going for a five mile run.

SPEEDYX profile image
SPEEDYX in reply to

How long did it take to get 0.05

in reply to SPEEDYX

2 years of low but steady decline.

SPEEDYX profile image
SPEEDYX in reply to

Thanks...I went from 350 to 22 in one month than next 7 months up to 39 and last 5 months down to 30...scans have been good.

pilot52 profile image
pilot52 in reply to SPEEDYX

Good Stuff

Zetabow profile image
Zetabow in reply to

I've been told not to lift anything heavy and I'm in lot of pain walking. Very frustrating as I'm only 56 now and was pro sportsman before my diagnosis(I was actually competing in World Masters in Switzerland when I figured something serious was up with me). To go from fairly fit to registered disabled in a blink of an eye has been nothing short of devastating for me.

Bebby1 profile image
Bebby1 in reply to Zetabow

That must be so difficult

Such a change in lifestyle

Pain causes grief in so many ways

I hope you can get it Under control🙏🏽

Currumpaw profile image
Currumpaw in reply to Zetabow

Hey Zetabow,

The fluoroquinolones used for biopsies attacked my old, forgotten, athletic injuries. First was my right December of 1999. Then, as all I did was unrack my warm up weight for some incline presses, my right shoulder audibly shredded and I just let the weight come down on my chest. My shoulder had originally been injured in 1981. I couldn't raise my right arm high enough to take things from the kitchen cabinets. My chiropractor diagnosed me as having had an adverse reaction to the fluoros. She is in her 60's and very experienced and has seen this before. She said that the old injuries are like low hanging fruit for the fluoros. That was in August. My chiropractor told me to report the adverse reaction to my uro right away which I did. The following December my uro insisted on a biopsy even though my PSA had been stable. He mentioned that his shoulder had been tweaked and it affected his golf game. Some therapy had healed it. Well--I had been getting ultrasound treatments and using nutrition and therapy as I had when that shoulder went bad in 1981. I had healed it then and it was quite a bit better with range of motion before that biopsy but with little strength at that point. Six more 500 mg Cipro pills and a large intramuscular shot of Levaquin and about seven weeks later while getting out of bed one morning a ligament in my lower back that had ripped in 1988 ripped again. I was a mess! It would take me as long as two hours to be able to move. I found that a combination of curcumin, ginger, ibuprofen and aspirin would get me mobile with cups of green tea. Many don't know this but caffeine magnifies the effect of pain killers. A doctor friend told me that there was a pain medication named APC at one time. The A is for aspirin, the P is for Percocet and the C is for caffeine. The caffeine was added to the aspirin and Percocet because it drove those drugs making them more effective. I was unable to get more than an hours sleep for years because of the pain caused by staying in a position. I found a couple positions that I could tolerate for a while and changed when the pain awoke me. Two years after that my uro insists on another biopsy! I say no! The joint, ligament and tendon damage I have suffered with is enough and that I am only supposed to have a 12% chance of prostate cancer according to my free and total results. I say let's do a 3.0 MRI and call it a wrap. Uh uh! He insists and says he will only use Levaquin, that he won't give me any Cipro this time inferring it will be "okay". Yeah --okay! A few months later my back which had healed quite well fell apart again and my left shoulder was added to the mix!

Stay active as much as you can just to maintain your range of motion. You might look for "hot" yoga classes in your area. Do the poses as best you can. You aren't expected to be a yogi. You will be there because you wish to maintain and improve if you can. It could help, even a sauna or steam room at a gym could be helpful. I know it can be soul destroying but try to get through it as best you can.

Wishing you the best. I'm still trying to heal. The only bright spot was that at least I didn't get an aortic aneurysm from the fluoros---YET!

I wasn't able to support my body weight in position to do dips on my VKR. I have gotten back to where I can do full range, body weight dips numbering in the high teens. I can't support any significant weight in the bench press yet and have just gotten a full range of motion back --again. I have to back off when I first find some pain. When that happens what I have gained, I then lose some and have to start over again. I'm trying to get my strength back.

Anyone that doesn't think the flouros had anything to do with my joint, ligament and tendon damage and don't forget soft tissue--yes--the fluoros can go after previously torn muscle tissue at least that happened in my case. A bone scan in August 2013 showed a bit of inflammation in my lower back. A bone scan in February of 2017 showed

"There is mild radiotracer uptake within the cervicothoracic junction bilateral acromioclavicular joints, likely related to degenerative change. There is mild heterogeneity of the thoracolumbar spine likely on the basis of degenerative change".

What a change! That is from repeated use of the fluoros! Note that the lumbar region was clear in 2017. The ripped ligament in 1988 in my lower back! It is vertebrae issues. It is the fluoros that went for the repaired ligament!

Don't give up number 7!--Zeta!

Currumpaw

j-o-h-n profile image
j-o-h-n in reply to Currumpaw

Double WOW....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/04/2020 5:27 PM EST

Tommyj2 profile image
Tommyj2 in reply to

Have you been able to maintain muscle mass and tone from these workouts??.....

in reply to Tommyj2

No.

Tommyj2 profile image
Tommyj2 in reply to

Think they are at least helping in SOME way?

Magnus1964 profile image
Magnus1964

Not all Pca is the same. With some a small amount of cancer will produce a lot of PSA, with others a large amount will produce a small PSA reading. you need to focus on your own numbers and watch the trends up or down.

SoFlaGtr954 profile image
SoFlaGtr954

PSA of 44 here. 11 years ago it was at 4.0. Finally feel like I’m on the right track and it took me this long to get here. Pursuing alternatives to conventional medicine that get to the root of the problem. And the root of the problem is not the prostate.

Within the last 2 weeks I was having serious back pain, pressure on my spine, burning up from the inside (my back was all red). Since then I have had 4 high dose Vitamin C treatments via IV and 5 hyperbaric oxygen treatments, followed by a Liver Detox and colonic.

What I have found is that the back pain greatly diminishes following a bowel movement with skin brushing. Following the colonic yesterday, I have zero back pain. All of the work I am doing is improving my situation.

My next step is to do a *very unique* colon cleanse - something I have never done previously. It takes 4 days and is designed to purge the colon of Mucoid Plaque. This highly toxic matter we carry inside of us each and every day. And we have absolutely no idea it even exists. It causes all sorts of health issues. I believe it is the root cause of disease including cancer. By the end of the week I should have photos to share for anyone interested.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to SoFlaGtr954

Over the past 11 years, you had responded in some way with conventional medicine. I assume it has eventually failed, and you have pursued alternative therapies? How did you find out about these alternatives, and are any covered by insurance? Sounds like you have put yourself into your own clinical trial.

SoFlaGtr954 profile image
SoFlaGtr954 in reply to HopingForTheBest1

I thought I had chronic prostatitis. My MRIs were all PIRADS 3, 2 or 1 for prostate cancer. When I was all ready to have a biopsy done, my radiologist literally could not find a place to stick a needle. I initially did 3 weeks of Cipro when my PSA hit 4.0. Didn't work. I later did a combination of EDTA chelation therapy via suppository (Detoxamin) for 3 months which helped me immensely (prostate calcifications and pereneum pain -> gone) and Tetracycline. PSA kept rising.

As of now, I'm running out of time to get a handle on this. The back symptoms I've been experiencing have been gravely concerning in recent weeks. Yet after my colonic on Saturday my symptoms seem to have improved tremendously.

I remain convinced however, that this can be treated using alternative means. It is hardly an easy path (it requires enormous discipline and is certainly not for everyone), but it makes intuitive sense to me. Increase the nutrition, remove the waste, clear the blockages.

If your colon is an overflowing sewage system, you don't wrap up the sewage pipe with concrete until the next pipe breaks, you get to the cause of the problem. You deal with why the sewage is overflowing in the first place. If your liver is so toxic that it can't do its job properly, you address the root cause of why your liver is not functioning at maximum capacity. Ditto for the kidneys. Everything impacts the prostate gland. The problem in my view is not the prostate.

I am 48 years old. I can't fathom the idea of having my prostate and/or surrounding nerves removed at this age. Determined to find a better way.

Re: clinical trial, pretty much, yes. What I am doing is quite risky. Playing with fire perhaps. We'll see what happens. I am determined to win.

My treatments are all self-pay except for the blood work which insurance is covering. Roughly $250 per hyperbaric O2 treatment and $200-250 per Vitamin C IV. Another $100 or so per colonic.

Reference:

Defeat Cancer: 15 Doctors of Integrative and Naturopathic Medicine Tell You How

Radical Remission: Surviving Cancer Against All Odds

Bigblock profile image
Bigblock in reply to SoFlaGtr954

Hey did ya see my reply to you from the MCP conversation? I agree with you for the same reasons and I did a colon cleanse by Blessed Herbs a couple of years ago, there one takes 8 days start to finish, includes 3 days cutting down food and five days no food except supplements taken in apple juice, it did work, I did remove Mucoid Plaque but it was like the bad black stuff you see in pictures, mine was white, quite thin and slightly transparent but it did work, do you do coffee enemas ?

SoFlaGtr954 profile image
SoFlaGtr954 in reply to Bigblock

Not yet, no, I'll take a look now.

Good to hear that you're familiar with mucoid plaque and you were able to remove some of this. I'm told by my colon hydrotherapist that it comes back every month or so. Strange. She does colonics 1x every 6 months and this palm tree trunk fiber each month. I'm really surprised more tests haven't been done on these stool samples to learn more about the composition, how it forms, etc.

I haven't done a coffee enema in awhile, but I know many swear by them. Gonzales was a huge fan of coffee enemas. Others dislike the stimulant effect on the body. When I tried this, it worked without question. Massive flush of toxins. I've done wheatgrass enemas, also tried diluted garlic juice.

Suds4me profile image
Suds4me

Along with Lupron ,my urologist has me on dutasteride and tamsulosin. He also has me taking Prosteon for bone strength along with weight lifting and exercise. I do find myself a little tired at times but starting to feel better now,that I’m finished with my radiation treatments (45 treatments) 11 days ago. Prayers to all.....

Loves2golf profile image
Loves2golf

My husband's was 3200 when diagnosed on 11-01-2018, his 70th birthday. What a birthday present!

BAZZAD1953 profile image
BAZZAD1953

Hi Gregg, when my farther Inlaw was diagnosed with prostate cancer, his PSA reading was “2005”!!! His GP’s were treating him for a bad back! Needless to say his bones were riddled with cancer. He lived for one more year in agony God bless him. His GP’s retired a bit sharp in 2009!!!

Never go on a PSA reading, mine was 2 in 2012 but I was taking Finasteride which you should double your PSA reading so mine was actually 4. I had a small cancer with a Gleeson score of 6. I was put on a wait & watch. I did this until Feb 18 when I requested the new NPMRI scan for prostate’s. My Little Cancer was now over an 1 inches long and a PSA reading of 6. It was whipped out in Oct 18. I also had a patient with full blown cancer in his prostate and in his bones with a PSA reading of just 2 at the age of 34. I’m not a GP, I was a practice Manager - retired now. Never let the consultant put you off anything, you know your body better than anyone else.

Regards Barry

PS sorry for the essay.

Currumpaw profile image
Currumpaw in reply to BAZZAD1953

Hey BAZZA1953!

Good info! No apologies necessary. If you think you should apologize don't read any of my responses!

Currumpaw

BAZZAD1953 profile image
BAZZAD1953 in reply to Currumpaw

Pray, why do I need to apologise please?

Currumpaw profile image
Currumpaw in reply to BAZZAD1953

Hey BAZZAD1953!

Your PS at the end of your reply--

"PS sorry for the essay. "

Again--not necessary at all. Good info--Thank you!

Currumpaw

BAZZAD1953 profile image
BAZZAD1953 in reply to BAZZAD1953

👍

VictoryPC profile image
VictoryPC in reply to BAZZAD1953

Great info.

2dee profile image
2dee

Dx in Jun 2018, PSA 1303, full skeleton metastatic, climbing over a point a day.

Now PSA 3.6 and easing up from a low of 1.2 about 6mos ago.

Body Scan last week shows about 2/3 less marking and extreme pain now under control.

Of the about 40 active members in my local support group one 6yr member started over 5,000 and I think another around 1,400.

IN SOME CASES PSA is a fairly accurate indicator of APCa, in others not so much.

Doubling time is important to track as are other tests. Alkaline Phosphatase for example. Study, learn, judge who EXACTLY YOU ARE, and what evolving treatments Will likely be best for YOU.

2Dee

michael00 profile image
michael00

Mine was 1230 and a friend had over 10,000

Gjohns1 profile image
Gjohns1

My husband’s PSA was 39 when they found it. His cancer had spread to his bones in quite a few locations.

EdinBmore profile image
EdinBmore

Bottom line: it depends...on quite a few variables. You'll find relatively low PSA and very aggressive cancer. And, conversely, high PSA and non aggressive cancer.

Muffin2019 profile image
Muffin2019

It is possible, mine was 154 when I started treatment, was 2.5 for years, then 5.4 then 7.9 with no symptoms. Went up that high in 2017 and began chemo in 2018 with lupron 3 month shots. Took it down to .6 but now back to 3.5 but no new lesions or activity in the bone Mets that are healing so we are seeing if it levels off. If not then add cosodex or another drug to knock it down below 1.

VictoryPC profile image
VictoryPC in reply to Muffin2019

Great real advice.

Charlean profile image
Charlean

I haven't been on here in a couple years. My husband passed away 3 years ago. I was on this site all the time while we fought this batter. I made and lost many friends with disease. My husbands PSA was always rather low and his cancer was extremely aggressive. What I noted through all this was..the lower numbered patients often had the most aggressive cancers. Just my observation through it all. God bless you all.

bhr17 profile image
bhr17

Mine was 1800 now .033

treedown profile image
treedown

I read the highest recording PSA was 27,000+ and that patient lived for 7 years after the test. Not sure it is true but it was in a published abstact.

VictoryPC profile image
VictoryPC

Metastatic Numbers are easily in the 100's . My uncle passed away after his surgery spread it to his bladder, his number was 3500 with a gleason score of 9.

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