Hi everyone, I am new to your community. My question is "how long does it take to go from normal PSA to over 117"? My doctor does not have any of my psa test records, from the past several years. We are pissed that stage 4 prostate cancer arrived with out any notice or symptoms. And, does anyone have experience with Erlanda? Cheers lopwillie
Stage 4 without symptoms : Hi everyone... - Advanced Prostate...
Stage 4 without symptoms
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lopwillie
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It took over 10 years for me to have very high PSA without any symptoms. My doctor .s office never bothered to inform me for many years as my other lab tests were perfectly normal. When I reviewed my last 10 years of medical records, I found out that my PSA was 53 in year 2010, then, 68, then 248, then 415, then 565 and finally 830 in year 2019 when I had Urinary tract infections. To this day, I wonder why I never had symptoms with such high PSA. I was walking/running 4 to 5 miles a day all these years and working full time without any issue.
The problem is also with health regulatory authorities...In early 2000s, PSA was being tested yearly for all men above 40,,,,but as soon as some rise in PSA was seen.. Urologists in America started taking out men's prostates and it became a major problem. Read the book "prostate snatchers." Then the same authorities made a U turn in around 2010..and directed that doctors do not need to do PSA test unless specifically asked by the patient. And here we are.. with hordes of men with metastatic prostate cancer.
amazon.com/Invasion-Prostat...
Thanks for your reply. It all makes since now. My story is a shot one. Last September, My PSA actually went up to 1,400. I had the biopsy with a Gleason score of 7. MRI and bone scan, showing it had spread. A 30 day shot (don't recall the name) dropped the PAS to 117. In Oct. I got the 6 month shot of Eligard. In Nov the PSA was 32 and in Dec down to 1.08. During January meeting with urology and Cancer Doctors, they want me to start on Erleada from Johnson & Johnson. Even tho my PSA is .09 and T below .10. I have not been approved yet. I had to send our 1040 tax form. Normal side effects of hot flashes and already added 10 pounds to my weight. I exercise with a trainer twice a week and once on my own. I walk a couple miles 2/3 times a week. Cheers William
William...Congratulations...You have had fantastic results . PSA dropping from 1400 to 0.09 with luprolide inj. Most men can only dream of this type of response. I predict based on what I know that you will live long and do well.If I were you..I will not add anything more and just enjoy this amazing Nadir PSA of 0.09. Will only add any more meds if PSA starts rising some day. Plan for long haul and save other weapons for later..will be my policy. Plant based diet and Exercise daily will help too
Let me make it simple..99.99 % of your cancer cells are dead because almost all of them were androgen dependent. You turned the testosterone tap OFF with lupron like med and they shrank and died. Celebrate their death and thank God.
On the other hand, you had 10 years of living without worry and a life without side effects of treatments? There is still debate about the benefits of early treatment......one study I read speculated that all these treatments at early diagnosis ma be givng a man an extra 2+ years of life...others credit that extended life to better treatments even for men who are not discovered at a lower stage. Many men discovered and treated at early stage still "progress" to stage 4. One theory is that many,many men, even with low PSA have circulating micrometastases that do not "bloom" for many, many years. Early on, my Doc said...." we have many more more questions than we have answers".
Maley..I was thinking about this.. how I would be if I was diagnosed 10 years ago and had to get RP and many strong treatments over these years. Because I was not diagnosed I had a worry free, very productive and happy life for over 10 years. This may be a Blessing In Disguise.Now, the same type of life has come back about 80% of my baseline. God has many ways to teach lessons to man like me.
and to all of us!!! Wonder what Docs would now advise if they had the ability to know how long a man with suspicious PSA would live symptom free without treatment??? Treating someone with pancreatic cancer is much more a no brainer!! I had a 4.1 PSA almost 8 years ago, at age 64-65. Many Docs would have ordered biopsy.....but Kaiser has a guideline of 4.5 at that age...so no biopsy. 7-8 years later , 2months ago PSA was 7.5, same as 2 years ago. MRI shows the worst......PIRADS 5!! Who know how long I've had that PIRADs 5!! I'm guessing they would have found something 7-8 years ago.....possibly advised to have treatment...and side effects for 8 years? Very high probability I have at least G 3+4....with PIRADS 5 that I have even worse Gleason...still with no symptoms. Torn!!!
I struggle with the thoughts of this and CANT find an answer.
Learn all, No, you should have a good malpractice case against your Dr, for this negligence.
You did tests and he never bothered to look at your reports
My wife will never allow malpractice suit...Lawyers wanted to go for it.She says this was our destiny...anything can happen to anybody at any time and we do not want to waste our remaining time on Earth fighting the doctor. He was going thru a bad divorce and financial ruin ..so it was his physician assistant who was running his practice for many years. I say be careful with PAs and NPs ..make sure you are seen by MD or at least closely supervised by MD.
Fair enough, that's your choice. But he should know that he fuc&$#ed you up.
I think the lesson this shows again, is that you and I, the patient themselves are the only ones who really care. We have to look at everything.
Enjoy every day, as your wife says, I totally agree
Yes!! PSA test were found to lead to unnecessary procedure's and costs that affected profits. (around 2012- I did the research) I never heard of the PSA test. Just got the old finger probe one time. Woke up one day going to the hospital getting blood to stay alive with a PSA of 800.
It depends how aggressive the tumor is and if it has already spread. It can get up to that value of 117 within a year if you have an aggressive cancer. You will get a biopsy now and a CT/bone scan. Then you will know the Gleason score which indicates how aggressive the tumor is and maybe learn if the tumor has spread. I would assume you will have a Gleason 9.
Does prostate cancer treatment in Germany differ in any major way from in the USA?
No way of knowing. Some virulent strains grow quickly, others don't.The only thing that's important is what you do about it now. I assume you're metastatic. Here are your options:
Greetings lopwillie,It all depends what the doctor is drinking........
Here it comes.... look out:
Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/08/2021 4:58 PM EST
Greetings lopwillie, It all depends on what the doctor is smoking.........
My doctor, 17 years, never took a psa test! When I retired at 66 and went to a new doctor because of Medicare he immediately took a psa along with a multitude of other tests. Stage IV Prostate Cancer. LearnAll's experience is quite simply tragic. Talk about innocent people being sentenced to death. But, has the insanity stopped?
• in reply tomonte1111
Was your doctor.
Dr Vinnie Boombotz?
monte1111• in reply to
Actually, it was Dr. Zorba. We just called him The Greek.
Kaliber• in reply to
Lol 😊😊😊
• in reply toKaliber
You are one of the few who may have gotten that joke.
Kaliber• in reply to
Everybody knows Dr. Vinnie Boombatz .... “ here I come to save the day “ , “ mighty mouse is on the way “ .... classic by any standards .... Andy Kaufman .. 2nd gen of the master and originator of Dr Vinnie Boombatz .... one of his Dr Boombatz jokes went something like this :
Doctor I haven’t been feeling very good lately, I wake up and look in the mirror and want to throw up ! What’s the matter with me ??
Dr Vinnie Boombatz retorts: uh ... I dunno what’s wrong with you, but your eyesight is perfect.
The master Rodney Dangerfield ... J-O-H-N’s mentor and hero. Mine too.
😊😊😊❤️❤️❤️❤️
dhccpa• in reply to
Yes , he didn't give 'im no respect.
SeosamhM• in reply to
CLASSIC! A+.
I used to trust "the best healthcare system in the World" No More. .I do my own research thoroughly and check each test result. .keep graphs and details of each one. Please be your own savior ..Its your life. There is too much greed and carelessness these days. You can not find good, old fashioned doctors with integrity and concern for patients. Most of them have been bought.According to Johns Hopkins University research....The third most common cause of death is medical errors in US Hospitals.
• in reply toLearnAll
Ronald Reagan said it best..Trust but verify.
Yes. I hear the second most common cause of death is j-o-h-n's jokes. I am also beginning to believe there are different levels of medical care. I am sure people in some countries know that for a fact. I have learned much more from you and others on this site, than from my doctor.
• in reply tomonte1111
I re-read this post and I'm now of the opinion that the cause of your problems was retirement. If you had continued working you would not have been diagnosed with pca.
I just completed the book Thinking for Dummies by j-o-h-n
monte1111• in reply to
I am already on Chapter Two. Obviously since john signs his name j-o-h-n he stutters. I never knew thinking was so fun. Now for Chapter Four.
I went from 2.0 to 216 in 13 months with widespread bone mets at diagnosis. My cancer is also the rare intraductal carcinoma, and behaves differently than the more common prostate cancer.
I guess first of all, many cancers don't have any feeling kind of symptoms until it's very late.Second, everyone is different. You can't say it takes X amount of time to get from PSA of 2, to 117.
If youre new to learning your diagnosis, you'll learn just how little we know about it.
My story, I had a full physical 14 years ago. I had blood work done. My PSA was 16. I didn't even know what a PSA was. Nobody followed up with me. Fast forward 8 years. I had discomfort in my groin. Again a physical. This time my PSA was 26. I had a Biopsy done and learned about a glisten score. Mine was 7. A 3/4 =7. Better than a 4/3= 7, but still not good. I had a prostatectomy. All good for 2 years and back came the PSA. Radiation of the prostate bed didn't affect it.
So here I am after a year with hormone therapy. Taking a rest for some months then back on. When on its PSA zero. It's been 7 months off and PSA is 2.32.
If I knew about PSA 14 years ago, I wouldn't be where I am now. Angry? What good does that do? We take it, live and get the most out of life. As they say, life is too short to be angry about it. My body is answering well to hormone therapy. Thanking God for that, and enjoying every day to the most. Get educated and stay positive.
You had a PSA of 16 and your Doc said nothing??? Kinda think that would be malpractice??
Morning. Bills never went higher than 5.5. However. Was 5.5 at surg. Never went below 3 after, was back to 5.5 by the time we got to Mayo, 4 months later. C11 choline Pet Scan showed it was in the lymphs in his chest.
Oops, he had no symptoms prior to surg and does not have experience with Erlanda.
My experience us that any patient with PCa needs to follow his PSA values closely - and keep a record of the values. Many doctors do not take the condition seriously. They still consider it an “old man’s disease” that doesn't require treatment. Which sometimes is correct. But not for me.
How much does a bag of groceries weigh?
Uh .... depends .... paper or plastic ?
( jump in here brother ... have at it . Humor is salve for our broken and tortured minds ).
😂😂😂😂😂😂
Hello , I found out I had stage 4 but I had some symptoms , but because of my age I passed it off as a bladder infection or enlarged prostate , never thought cancer was involved ,I eventually could not control my urine flow at all , so after a few really close to embarrassing events I went to my doctor and here I am now .........
Your story many of us lived or are living...I had a PSA in 2010 at age 70 ...It was 3.
I had no idea what PSA means....
I rarely see a doc, may be once in 2-3 years...if I get food poisoning...
So no doc ever mentioned PSA test...
Just for curiosity somebody asked me to get PSA in may 2019....
==========
So PSA 30, and then all tests....
URO took 5 min to tell me I have PC at least grade T3...may be metas...
had all waitings in depressing places for MRI PET Scans and biopsy etc....
Happy that I Stayed away from these scorched earth sadistic protocols
Personally I do not regret it....
========
The top prostate oncologists...so called professors..I found real dumb asses...and inhuman.
This profession has lost all human touch and is very ignorant and afraid to be sued...
A shame....I know more than them by simply reading published work...
I tell my URO that he has no time to follow all new developments but I have all the time to read every published work...and learn from forums
not victim of clinical studies which take 10 years..
============
So I followed the protocols and now on my own to keep remission in remission...
And there is a lot I can do ....but docs are trained to wait for recurrence....
A sad story for a patient who blindly believes these docs who sit whole day in office since 20- 30 years ...like robots without emotions....with limited mental capacity...
I am the clinical study and I know well how my internal machine works....
I hope one day we will have Artificial Intelligence based docs who will have personalized therapies.
========
For example I get ADT, same for a person BMI 30 or 18, 5'6'' or 6'
black white brown or yellow...meat eater or veg.....
otherwise healthy or with other health symtoms....
a failed approach
=======
Well I live fully and have enjoyable life style with my wife since 55 years....
But I am pissed up with this rotten inhuman outdated medical profession....
So let us take our health in our own hands and share on this forum.....
I am vegetarian by taste, enjoy wine , daily walking, lot of laughing
Take some off lable drugs.....am on ADT...
Feel tired and I tell myself move and get the hell out....no more tired..
======
Recently I started testing with Andrographis Extract..NOW 400mg----
Since a week with one capsule a day
An age old natural medicine in Ayurveda....seems good to bloc certain PC cancer pathways
To my syrprise, I have now less hot flashes......
--------
Let us share our joy of life and when time to shed this robe...let it be joyfully
I took that supplement and now my right arm is 4” longer than my left arm. !!!
Na ....just kidding but Andrographis is known to strongly increase testosterone in your body ....that’s the food that PCa eats. Google “ andrographis increases testosterone “ and , most important, talk to your doctor about it. You might feel better when using it because it’s countering your ADT.
Just say’in 💪💪💪👍👍👍
I read just the oppositeMay be I do not understand much...
ncbi.nlm.nih.gov/pmc/articl...
Did you Google it ? As with anything like this, you should never put anything in your body without talking to your medical care team first. If you trust them with your life, you have to respect their advice. If they are good with it then it’s all good, your doctors might know of a contraindication with some of your meds you didn’t know about or simply just not want you to do it. I’ve had a couple of those myself with my doctors and supplements I wanted to take. I take about 20 - 25 different meds and supplements a day, sorting all that out gets complicated . I’m no doctor and don’t even play one on TV , but I do know that in India , andrographis is thought to boost testosterone and fix man problems , at least that what my Indian friends have told me. That same claim is backed up on Google as well. Google also said it blocks some cancer paths too. Sounds like it needs a doctor to sort it out. That’s just IMHO. Your mileage may vary. Have a good one brother.
💪💪💪👍👍👍❤️❤️❤️
My PSA since going metastatic goes up in a pretty predictable exponential curve. It doubles every 45 days when untreated. I suspect it is not aggressive type. During an adt vacation for three years it rose to 35. Then resuming adt it fell back to <0.1. All the time I had spots that I could sense as lymph node swellings, skull mets, vertebrae mets, and rib met. Very difficult to sense but I believe they are caused by growing tumors. Adt seems to cut them back nicely. However, my guess is that there is a point of no return, where nothing works, (e.g. soft tissue mets). Also there are various types and various reactions. Diet and genetics play a part. Trying to find answers is a pain.
I virtually had no symptoms and regular checkups (no PSA tests). Was very weak and received my first PSA test. It was 800. 3 days in the hospital. Was weaned on biocumallade? then on to zytiga with prednisone for over 3 years now. PSA is undetectable. Alkaline phosphate number went from 3000 to 85. All of this didn't happen overnight. I was very pissed that my general practitioner never ever gave me a PSA test. I know how you feel. Stage 4 Sunday surprise. Hang in there
Anecdotally, I was in a very large HMO at age 50 and requested a PSA test and a digital rectal exam as a baseline. My PSA was around 2.0 and the DRE was normal. Thereafter, the HMO did not do general population PSA "screening" testing per their internal guidelines and in accordance with the US Preventative Services Task Force recommendation that existed at that time (looking to avoid over-treatment, undue side effects, etc.). I later changed insurers, lived a normal life with no prostate symptoms, and only at age 65 developed some severe lower back and abdominal pain which resulted in my initial Stage IV diagnosis with a ridiculously high PSA of 5,006, a NM Bone scan that lighted up like a Christmas tree, and numerous, widespread metastatic lymph nodes. At the time, it was very emotional and difficult. It got better the longer I've survived. I'm grateful to still be here 7 years later at age 72. For the past 1 1/2 years I've also been trying to stay ahead of an additional widespread metastatic melanoma. Odds are, the metastatic melanoma may lead to my earlier death.
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