My bio is up to date. I was undetectable but today it came back at this low number even though I am on Orgovyx and Erleada. I realize my pathology was horrible but being undetectable for 3.5 years post RP was excellent and then a slight tick up to 0.021 and 6 months later to 0.056 and then radiation and Orgovyx with Erleada and then getting to undetectable 1/2 though radiation and only 2 months from starting Orgovyx I had hope for cure. Obviously that is out the window and now it is kick the can down the road time. Just wondering switching to Xtandi would or not provide curative measures or??? Or anyone have experience with Dr Onik? Or with a clinic called Burzynski Clinic?
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Peppertree602
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thanks for such quick reply and fully agree about ultra sensitive and get that BUT given all the stuff I am on plus post RP and post radiation with drugs I should remain undetectable or? I believe you said SOC is 3 years ADT and 2 years Erleada or Xtandi given uptick in PSA correct? This still might be curative or as I said kicking the can and waiting for new stuff?
If you were diagnosed with pelvic Lymph Node metastases and received radiation to that area, SOC is 3 yrs of ADT and 2 years of Zytiga. It has nothing to do with your PSA, and it might be curative.
This may be OT here, but could your comment raised question - can you elaborate?
My own case - initial PSA 52; Gleason 4+3 both biopsy and post-op; RP 2018 Stage 4a
I had 39 sessions pelvic and prostate bed radiation plus 4 full years ADT Lupron or eligard and bicalutamide
The question regards “curative” - your opinion appreciated. My MO extended ADT from 3 to 4 years as I had no QOL issues on ADT. I saw a published study applicable to my case wherein author also suggested that radiation and extended ADT in some cases could cure. I discussed with MO this paper - she suggested “remission” a better word. Your thoughts?
I don't disagree at all which is why I discussed with MO as to "why" in a published paper that the "cure" was considered in the paper a possible outcome for circumstances like mine where RP, adjuvant radiation and extended ADT term were in the treatment program.
I did not save copy of paper so can't include exact wording used by author.
I am not aware of how "cured" is proven. With my 10 year prostate cancer and current Dx and treatment of melanoma cancer, I am gaining experience in my understanding of remission, durable remission, and long-term durable remission.
Sometimes, if cancer has only traveled to pelvic Lymph nodes, it still can be completely eradicated. Unlike blood, lymph is a slow moving fluid, so there is a possibility that the cancer can hang out there for a long time.
Thank you Tall_Allen. That is consistent with how my MO discussed the noted paper with me though as I said she was hesitant to use "cure" word unless I was past a ten year threshold. It is now 7 years. She is very positive for my outlook though
Mine hung out for over 16 years. I was diagnosed in December 2005. T2B, Gleason 3+4. PSA about 5.0, and treated with brachytherapy. PSA was as low as 0.1. And started ticking up about four years ago, but was only discovered on a seminal vesicle and one nearby node in the second pet scan in the last three years this past January
In Australia 0.02 is classified as undetectable and the reason is, that most labs only go to that level with testing. Some do go to 0.01 but thats it.
I'm with TA, - this ultra sensitive testing is causing anxiety and anxiety causes stress and stress is not good for anything. So stop worrying and start enjoying life. My bet is that you will still be with us in 20 years time. After that the QoL sucks anyway.
I can tell from your Bio that you leave no stone unturned and while that is good, and keeps you informed, sometimes turning over little pebbles looking for something that isn't there can cause sleepless nights.
Enjoy your tennis and your life - tomorrow anyone of us could be wiped out in a car accident or be bittern by a deadly snake (we have a few in Australia).
I use what I think is the most commonly used lab in Sydney - Douglass Hanly Moir and get either <0.01 or 0.01 as results so I think most people here get 0.01 resolution.
Yes you are correct. Clinical Labs only go to <0.02 but Clinpath will go to <0.01 - I think in the USA they have uPSA testing where they go down to 3 decimal points. I don't see the point of that myself but some like to know. If you still have a prostate, you will likely never get a true zero reading anyway.
PCRI.org has a mid 2025 presentation that is really helpful. It is nine hours but Talks a lot about low volume disease but much is applicable to others. Good luck!
I used to always get USPSA test per Dr. Myers, I was undetectable for about 6 years until it became detectable again. The course that I took per Dr. Sartor, my current PCa oncologist is to wait until it reaches 0.2 and then get a PSMA scan and see what I’m dealing with. I’ve done this twice, a couple of years apart and each time it showed a met on a different rib that I treated with SBRT. PSA then fell back to almost undetectable each time. I’ll continue playing whack a mole as long as possible depending on number and location of mets. I always liked the USPSA test, it didn’t make me anxious and I wanted to know as soon as possible when something was brewing so I could make a plan of action.
Ed I love fishing! I live in Sarasota and go out as often as I can but my boat is in the hospital currently and hope to get it back next week with a new Seakeeper system installed. BTW are you still using Sartor?
Yes still using Sartor, since cancer is somewhat stable I haven’t had to make a trip to Mayo, I communicate with him via text however, pretty awesome doctor.
I’m looking forward to getting out on the lake near my house, lake Lanier, it’s not saltwater but we get some nice stripers and it’s a premier spotted bass fishery in the SE. Heading down to FL next month to get some fishing in, looking forward to it! Catchum up!
I heard that too but he didn’t reply to me in a text I sent inquiring about it, so I left it alone. Sometimes because of contractual reasons a doctor can’t say anything for a while.
The Burzynski Clinic's marketing efforts and and my proximity to a recent conference grabbed my attention. I had a look but was not intrigued. A few years ago I looked into Envita Medical - they remain in my quiver. Envita are heavy marketers too.
IMHO kudos for being out ahead of conventional thinking and being concerned with lingering low volume disease following treatments. As a side-note, I find great value in ultrasensitive PSA testing. All the best!
Hi, that's working for u Now, u may experience occasional small spikes like this and trust is non consequential, like your BP sometimes it may rise or gabby afew points, that's normal considering your still producing testosterone, your male so u should have some, that's part of the balance of 3, testosterone progesterand estrogen. Because you've produced so much extra testosterone is why your out of balance, the excess dies and mutates is difficult for the body to throw off properly. Now doctors won't explain it to u that way, I don't know why however no one said THEY knew the answers to all the whys, and remember, medicine is a PRACTICE and THEY aren't sure about any of it. Clinicians surmise treatment with their best educated guess from historical data, and many times they are accurate. Know that everyone is diffrent though, and Your attitude and belief plays the biggest of parts in YOUR healing. Hope that helps friend. Love n light brother.
In addition I have an infra-red sauna in our bathroom which I use 3 times a week for 30 minutes and come out sweating like a pig. Nice to relax in there 1/2 way nap
There are many "definitions" of undetectable depending what PSA test you use. What is your definition?A "old" definition which is still used wildly is <0.1 that is using a 40 year old test. There are much more sensitive tests and depending where you're tested they can be <0.01 or <0.02 or <0.006 or others. LabCorp offers the most sensitive at <0.006 that I am aware of in the US. These all use the same principle in testing. At one time Duke offered one to 0.000 but it was not commercially successful and is not offered anymore.
Then there is another PSA test that uses a different method of testing and will return different values altogether. This is offered by Quest labs and can't be compared with labs from other labs. I do not recommend using Quest as the numbers will not match hospital or LabCorp values.
So when you're on ADT of course it's can and usually is telling you the effectiveness of the drugs not whether you're free of cancer. Drugs also can wane in effectiveness towards the end of their stated injection timeframe. There are charts showing this wear off for different injections, one month, two months, three, six. Orally taken drugs taken daily can wear off as well if days are skipped.
So ultrasensitive PSA tests give you a earlier look at what's going on, this gives you time to plan your next steps
To your question No, being cured is not necessarily out the window at this point. You may still be cured.
My approach has been to stay off ADT to let PSA rise until detectable with PSMA scans and then hit it with SBRT. SBRT can be done many times and there are other options such as cryotherapy, even surgery which can be done as well.
Not sure as I'm writing this what your history and details are but I read you were undetectable for 3 1/2 years after RP off all drugs, so that's a good sign that your PC is minimal. And you may eliminate it completely with SBRT.
So the not so great news is your seeing a rise. The good news is PSMA scans can find your limited PC and you should be able to kill it, you'll need to get off ADT to find it. Let your PSA rise and PSA test frequently and Scan until you find it. PSMA scans can be repeated and approved by insurance each three months. But you looking at scanning at determined levels taking into account your rise rate.
In the end you looking for a stable PSA or a truly undetectable PSA using the most sensitive PSA tests.
I think you will do very well, but remember many doctors want to put you on ADT continuously, and I believe that is incorrect for a patient with the history I mentioned. Continual use of ADT leads to castrate resistance over time. I prefer to find and kill the PC and live life off ADT totally or as much as possible for patients with limited PC like yourself.
I just read your bio and I see you have suspected lymph node in left iliac near the ureter. So your matching up to me pretty closely. So the issue here is that the urine in the ureter kind of masks whether it the urine or a lymph node. I had the same and the reason it wasn't killed by whole pelvic is this is a sensitive area so whole pelvic tries to avoided it. If it grows it will be better defined and will appear distinct. Now my lymph node was long and skinny near the ureter and the colon is there as well so the concern is hitting either of those two with radiation. It's a hard area to get to for surgery and cryotherapy will damage the ureter. So I had a form of SBRT at Mayo where images and a new plan is created on each SBRT session, 3 sessions 3 days in a row as I traveled to MAYO for care. And actually they rescanned me halfway through each session to make sure nothing moved. One session my colon dropped, so they made be walk around bend down to touch my toes. And then rescanned and replanned the remainder of that SBRT session. It worked out fine.I see the list of hospitals you've been to, I too went to several of those, my list MSK, MDA, Moffitt, MAYO Rochester MN, and FL once for consult. UCLA, Levine Cancer NC, Duke, and others. I settled on MAYO as my primary but saw others for injections, scans, opinions.
I go back to MAYO in September to be scanned, PSA testing every two months at this point and scanning as needed but at least once a year is part of the rest of my life.
Sorry for this request..........I did not read all of the comments in this post.....but in 10 words or less let me (us) know why Mayo gave you the finger (and not for a DRE)....
Hey and yes tolerance will be developed over time for it is what our systems do, in its way to replace and produce healthy cells the information is coded as 0000. RNA cannot write code into this which would of course change DNA instructions. Amazing minerals enzymes vitamins and metals when unbalanced affect the cells in such a way to present a dis ease. Holla back friend let's keep it Goin, all information for the good to assist in our decisive skill to effect positive change in our avatar🫡
Peppertree602 - I live in TX too. Locally here Burzynski Clinic considered by many quackery due to controversial, non proven treatments. No knowledge of Dr Onik.
Regarding .014 value on uPSA. - since my own RP in 2018 followed by radiation and 4 yrs ADT; I got Labcorp uPSA every 3 months. On several occasions during ADT treatment years as well as after, I have gotten a .014 rather than <.006. MO always advised “no concern” with her experience these minor upticks likely would be back to <.006 on next test. In all cases they did.
I am in USA San Antonio for last 10 months. Back in India I used to get <0.006 for 3.5 years, Did 3 LabCorp tests in USA - results were 0.014 , < 0.006 (so elated to get back my tag) and then again 0.014.
I appreciate this commentary. I have been using Labcorp for the past 15 months since surgery. I, too, am in Texas. The Houston Labcorp facility has done my uPSAs. I received three <0.006 readings in a row, and then on my last test, I got a dreaded 0.014.
What I find most interesting about this is that many guys (like you here) have posted the same 0.014 reading as a detectable (often their first detectable reading) before they go back to <0.006 on the next test. I have indeed seen some 0.008s or 0.010s etc, but the 0.014 reading appears to be very common, almost suspiciously so. I’m aware of the history with the changes in reporting in the past with Labcorp and don’t believe that’s the reason for this frequency of 0.014 reporting, but I suppose it could be.
A test that measures PSA blood level zero is not there, so a "CURE" is technically impossible. However, elimination of all prostate cancer cells is possible. We just have no way to verify it.
did you test with labcorp? If so chances are it’s a mistake and test again soon. Mine was <.006 for
A while and then last June it was .014. In September it was back to <.006 and even in March of this year still .014. Please let me know if it was labcorp cause they change their assay kits sometimes
A few years ago, LabCorp began "reporting" to a less rigorous level. So their ultrasensitive tests were reporting to <0.006 and then they began "reporting" to something higher, I forget offhand what that level was but let's say it was the 0.014 you mentioned.So what happened was they still ran the same exact test, exactly the same but they were not confident in the accuracy of the PSA level every time.
So based on or example they never reported a value less than 0.014.
So this went on for a year or more? Patients were confused and LabCorp became certain of accuracy of the test. They went back to reporting to <0.006.
It's possible the lab processing your PSA is actually two different physical labs one reporting to 0.014 the other reporting to 0.006. check your report for information on where it was actually processed. I believe it's possible you'll find some how the "reporting" or a different machine was used in you location.
Now LabCorp has two ultrasensitive PSA tests, one cost more. They are the same EXACT test, but one reports your results in a graph, and they charge you extra for that.
Agree with NecessarilySo. No way to say cure with 100% confidence, but the longer you go if off treatment with PSA less that 0.1 then the better you chances in my view!
It's been awhile since my last post, but I think this particular 'topic' is worth adding a thought or two.
I'm starting my NINTH year since my original Dx of 'Advanced Aggressive Pca', which was also NODE positive, with a G9, to add to my feeling like I was a dead man walking.
I was hanging on by my fingernails - just a tiny hair short of Stage 4, (T3B) at the outset.
I had radiation treatment - the MAX allowed (too far gone for prostate removal) and the SOC 'hormonal treatments'.
I had the worst side effects, so I decided to take a 'holiday'.
That led me to a recurrence. About 4 years had elapsed by then.
I then went 'rogue', some might suggest, as I refused the NEXT recommended SOC and went on my own protocol (an SOC option in many European countries) which had a surprise net effect of 'remission' for another TWO years.
Slowly, but surely, my PSA started to rise AGAIN, after I quit ALL treatment(s).
That was a good decision FOR ME, because the QOL was more important to me than resuming ANY treatment with possible side effects.
Today, I have rebuilt my body mass and muscles, sleep well and feel GREAT more often than not.
I do have a fair amount of fatigue, so I NAP when I need it and anticipate that I'll keep going like this UNTIL I notice a change that I can't ignore.
I have been part of TWO clinical trials (I'm still monitored every few months, due to one of them) and I've been offered a THIRD Option - IF / WHEN I really need it, in the form of a Patch.
With the 'regular' scans (bone and CT) there is NO SIGN of significant metastases, so something I did got me this far.
I did go 'off label', but I don't feel it's worth pursuing that avenue with you.
The CORE message I'd like to leave you with is the following:
Keep living the best you can - the word "CURE' is likely off the table, but that doesn't mean the end is near.
Enjoy your time - find and do FUN things - enjoy being the best YOU you're capable of and don't regret the choices you've made so far.
IF the side effects of some treatment(s) go too far, you might reconsider your options. For me QOL is the top priority - I'm in my 70's....
FYI, my PSA currently sits just above 3.0 and increases by about 10% every 3 months.
IF my PSA reaches TEN or more and I don't feel well anymore, I'll take the 3rd option, which remains of the table for me. I have met men with PSA levels well above the '10' level and they feel well and are NOT taking any form(s) of treatment.
PSA levels and resultant CANCER activity are NOT a linear function. There are other factors to consider, when decision making.
Predictions are like a fool's errand - not worth spending much energy on. Take care of yourself and those who support you. That's what matters most.
This topic is controversial and the reply could take pages to respond to.
I can offer this - there are / were MANY comments made about off label drugs and supplements.
I did a LOT of research and tried several recommended products / protocols OR choices, hoping for a break-thru or some feedback from my body and or overall feeling(s) of my state of health.
NO two cancers are identical and NO two people will respond the same - results may vary and some experimentation MAY be harmful.
I will mention TWO controversial 'drugs' that are still part of those discussions.
IVERMECTIN and 'FENBEN' ....
You would need to find sources to get 'them' and you'd need to understand HOW, WHY and WHEN to take them.
That's as far as I'm willing to go - I am NOT suggesting you take either one, but simply point to the research YOU need to do to come to your own conclusions.
There's a LOT of info out there - it's up to the individual(s) to figure it out, with the potential risks involved.
Just a follow up to this post. Several posted about the dreaded 0.014 number and potential lab errors and in Fact my Onco Dr Kilari and RO Dr Dattoli both called and said take a chill pill like TA mentioned below with anxiety. Yes, it does cause anxiety BUT I am a believer in knowledge and action plans. Dr Dattoli was adamant that he has seen this Labcorp 0.014 NUMEROUS times and it was almost always an error. So my re-test came back today at <0.006 as he thought it would.
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