I had RP 3/22, PSA went up to .095 3 months after. I started Orgovyx on 8/15/22 had radiation Jan & Feb 23 and started Abi 4/23. All my psa's have been 0 since 10/22. Now it is at .014. I see my oncologist next Tuesday but I don't want to wait for his answer.
How bad of a sign is this?
I'm guessing I should have it rechecked?
What's wrong with 0.014?
it’s been undetectable and I expected it to stay there while I’m on orgovyx and Abi. Is this correct or just a blip?
Your expectation is unreasonable. PSA is negligible.
Thank you, that is reassuring. What level should I be concerned about?
FYI- I am a patient at MSKCC in NYC and my understanding is that MSKCC doesn't measure beyond <.05, as they deem it insignificant.
Post RP I rely on <0.010 as best indicator, (no ADT in use), and values above concerning. But then, as I had six metastatic pelvic lymph nodes surgically removed at 0.13, including para-aortic node, I believe it has to be cancer at lower values. I learned to not give this beast time and obscurity. Of course, multiple tests are needed to verify a trend.
This is what concerns me, I'm on ADT and Abi and still I have .014.
I have been diagnosed and treated for prostate cancer the last 20-21years……I have NEVER had a PSA of just .014.
You are the lucky one and will likely die with PC, not from PC….Livestrong!
Of course, discuss with your doctors but my understanding is that you should be dancin' in the streets. .014 is so low as to be nuffin, nada, zip. Many labs don't even provide readings that low. I'm sure I'll be corrected if I'm wrong about this and many of us are in a constant state of worry and anxiety about "the other shoe" dropping, but it seems like a good number to me.
EdinBaltimore
Hello Edin, respectfully, and knowing my 0.03X for past two years, no ADT, is considered very low, my perspective is somewhat different. Yes, these low numbers are good, and I dance in the streets, well, more walk in the woods, but not because of my very low stable usPSA. As I share, I had six cancerous pelvic lymph nodes, including common iliac and para-aortic nodes, removed during my third treatment, salvage ePLND, at usPSA 0.13; cancer had to be present and thriving at much lower values. Although I am not in a state of worry nor anxiety, I keep a very close watch on this beast, knowing, based on the experiences of others, that this beast can come roaring back from what some call an 'undetectable state'. All the best to all of us! Murray Keith Wadsworth
thanks… I’m trying to stay positive and I’m getting a new test tomorrow. My decipher score of .93 scares me.
Retrospectively graphing my fluctuating PSA values, including years before my diagnosis (Dec2014), and through three treatments, what is clear is that the 'lows' were always on a slow steady rise. I have carefully tracked fluctuations since my ePLND six years ago, from <0.010 to 0.03X range. Again the lows, the 'drops', reflect a continuous slow steady rise. Why I test monthly/bimonthly. I have been told by some fine docs I am crazy, but after careful study of graph, I get better than an apology, I get acknowledgement.
My very experienced MO at Johns Hopkins (30+ years t=mainly treating prostate cancer with >350 peer reviewed publications in the field) does not use the ultra sensitive PSA test. When I asked him why he said the results are too unreliable and variable. I get my PSA tested at Labcorp. Their undetectable is 0.1, so knowing the ultra sensitive value is just cause for anxiety.
I did get an ultra sensitive PSA performed at Emory after radiation treatment last year. My PSA was undetectable there as well and they report it as <0.014.
does your doc's non-use of usPSA apply to patients who had RP? My reliance on <0.010 post RP as best indicator is in part based on a JHU research.
Yes. I had a RP in October 2021. I don't believe he uses usPSA for any patients. He is the Director of the Brady Urological Research Institute. Full Professor of Medical Oncology, Urology and Molecular Biology at Hopkins. I have complete confidence in both him and his experienced NP, Diane Reyes.
I get why he doesn't use the usPSA. What are you going to do with the results if it's < 0.1? I believe that is the threshold most RO/MO use as the trigger to either Image (PSMA PET) or initiate further treatment. So, if there is variability in the ultra sensitive test it is just going to provoke anxiety until the PSA reaches threshold. I don't believe a minimally rising PSA will provoke a re test sooner than 3 months (his protocol).
I appreciate the reply. My daughter graduated JHU in 2008, neurology, with honors (proud dad). In 2015, I consulted extensively with JHU on my diagnosis and treatment strategy. I do respect the institution, and acknowledge I do not have the pedigree of your doctor. However, I do see this differently.
Here is what I do with my results below <0.1, and no, the frequent testing does not provoke my anxieties. My RP nadir was 0.05 and we knew cancer remained. I tracked it to 0.1 and elected salvage RT to prostate bed (no imaging), not wanting to give cancer any more time. Nadir was 0.075; we knew we missed. I tracked it back up to 0.1, when multiple health organizations recommended I begin ADT and chemo (STAMPEDE Trial). Instead, I went to Europe for imaging that is still not available here, the Ferrotran nanoparticle MRI. Suspicious lymph nodes were identified. Back in US, same recommendation, ADT and chemo. Instead, as I share, I went for salvage extended pelvic lymph node surgery in Europe (could not find a US cancer center). That surgery confirmed cancer as far as my para-aortic nodes, and yielded a result of <0.010. I have been tracking it very closely for past six years; last two years holding steady very low stable 0.03X. PSMAs and blood biopsy indicate NED (so far). I am taking steps such as combating (yes unproven) cancer stem cells. What is clear to me and my medical team is that cancer is present and active well below 0.1. I see no reason to give this beast time and obscurity. My intent, if it comes to it, is to delay ADT and thereby CR for as long as possible.
It certainly sounds like you have done your homework and have been very aggressive in seeking treatment. I hope the your treatment is successful.
I have taken a different route. Initially, I (we) thought my high grade prostate cancer was confined to the gland. Even the RO at a COE said he believed RP was a reasonable choice and he usually recommends radiation for high grade cancer given its propensity to spread early. I wanted it out, so I chose RP. Unfortunately, over the next 6-9 months I discovered through PSMA PET that it had spread to T8 and pelvic node(s). Instead of researching the treatment options, I researched the Medical Oncologist. The treatment options for oligo metastatic disease are so rapidly changing that I don't believe there is a set in stone SOC. I wanted someone very experienced, involved in research/trials, that was also aggressive in treatment. Hit it early and hit it hard. Research leads to clinical trials (Phase 1, 2 then 3), which goes through the approval processes and then becomes SOC. That's a long lead time. Newer drugs and treatment modalities are first tested on those with advanced disease with little to lose and only later becomes available in those with early stage, limited disease. I wanted a MO that was on the leading edge of the curve.
On this and other prostate cancer forums I have read about patients essentially directing their own treatment through extensive reading of the literature. That is certainly their prerogative; after all, it's our bodies. Having practiced medicine for over 40 years (retired last year), I have occasionally encountered patients that wanted to direct their care. Sometimes their requests were on point, sometimes not. Making sense of the complicated field of prostate cancer and treatment requires extensive knowledge and experience (IMO). It's not that I don't ask questions of my MO, I do, but at the end of the day I follow his recommendations. I want the longest survival possible weighed against risk/side effects. He knows that.
BTW, my daughter graduated from Emory and is an Infectious Disease specialist at a well know COE. She has a coffee cup given to her by a colleague (keeps it at home). It reads "Don't confuse your Internet search with my Medical degree". I thought it was funny, but there is truth to the statement.
We are all just doing our best to fight this cancer and avoid the debilitating side effects of treatment.
Good luck to you and all.
Thanks! Good chat! Proud dads! I do not think in terms of my success as being 'cured', (although I will take it ;). As commented, I think in terms of delaying ADT as long as possible, but not waiting until the long established 0.2 threshold post RP. I agree treatments are changing rapidly. I do not act on my own, and have an evolving "multi-international" medical team whom, IMO, has excellent pedigrees.
I agree with your daughter’s coffee cup. But also I’ve also had the experience of being handed off from a surgeon to a radiation doc and then an oncologist who met with me for 10 minutes and then had his NP see me the next 3 appointments and the NP was clueless. I have since found a doctor that I really like and he spends time with me discussing options. I’ve also been dealing with separate nerve issues. There I wait 3-6 months to see a neurologist, the last one met with me for 20 minutes and then his scheduler set my next appointment for 11 months out. I’ve been diagnosed with a rare Parsonage Turner Syndrome which is debilitating and my neurologist says come back in 11 months!
My point being that most doctors don’t have time to give each patient the best care, they rush through office visits and want to use their standard approach for everyone.
I could go on about the 5+ times doctors really had a bad plan that if I didn’t question I would be in bad trouble. This includes my urologist whose biopsy said I had Gleason 6 and should check again in a year. I didn’t listen to him and quickly found out I had Gleason 9 that had already spread to a lymph node.
Sorry but I’d be in a real fix if I didn’t do some googling.
There is a lot of truth to what you say. I guess I have experienced it as much personally because 1) When I have an appointment to see a physician most of the time they meet personally with me-professional courtesy, I guess 2) With my physician network and word of mouth, I know which specialists to see and which to avoid 3) Starting with a pretty good working knowledge of most specialties with added research on a specific topic, I am fairly knowledgeable on diagnosis (a big part of my specialty) and treatment.
That was a major screwup on the part of your urologist.
I agree that you can't really do anything until 0.2 but doing the test every few months can track how fast or slow the levels are rising and give you an estimate about when radiation treatment will start. Looking at mine I will likely start radiation in August.
03/17/2023 0.029
04/22/2023 0.032
08/23/2023 0.046
12/07/2023 0.082
01/17/2024 0.089
03/28/2024 0.118
With respect, are you saying the Ferrotran nanoparticle MRI findings of five potential positive pelvic lymph nodes, three of which were rated suspicious, done at usPSA 0.13 by the renowned Professor Jelle Barentsz (retired), followed by salvage extended pelvic lymph node surgery by the renowned Professor Alex Mottrie, that removed six cancerous pelvic lymph nodes, including my left para-aortic node, yielding an usPSA result of<0.010 for two years, and today, six years later, with my usPSA holding very low stable 0.03X range, no ADT/chemo, are all nothingburgers; "little to no real significance"?
"little to no real significance"? Nowhere in my post did I say that. Biochemical reoccurrence though is set by the medical community at ,2. That is the magic number my radiation doctor is waiting for. .2 is the standard also for psma scan.
Of course you are right and it was not my intent to suggest those were your words. I was attempting bit of levity - I offered a common definition of nothingburger as you did write "can't really do anything until 0.2". As I understand, one tenet of Health "Unlocked" is to open up thinking by sharing personal experiences. I strive to share my experiences that the 0.2 guideline, (and for some centers 0.1), is wrong; that cancer is not just present but active at lower values. As I share I rely upon <0.010 post RP as best indicator. Twice I waited until 0.1 to act - I have learned to start taking investigative and diet actions above 0.030. All the best to all of us!
My recent PSA saw an increase from 0.04 to 0.06. When I saw this result I viewed it as a 50% increase and became concerned. I checked with my MO and he reassured me that this should not be a concern.
Recheck and continue to get regular testing, if it continues to rise once it hits 0.2 get a PSMA scan. It’s possible that the scan can detect a tumor that can be treated with SBRT. I’ve done this twice now over the last two years under the direction of Dr. Sartor. Both times PSA fell back down. I was undetectable for about 6 years and now I am castrate resistant for the last two. I can understand how a PSA of 0.14 can be alarming, but you are still extremely low.
Ed
Thank
I had this same situation happen to me after about 2 years of 0 readings. My Urologist decided to check my PSA using an ultra sensitive test ( without my knowledge) that came up with a reading of < 0.014. Scared me until I figured this number was as low as this ultra sensitive test could measure. Been receiving 0’s for the last 3 years. Looks like your in a good place.
Thank you
After reading your post and the others below it, I got to wondering you reported .014 and others reported <.014. Did you miss the less then sign on your report? Just thinking and realize that maybe dangerous at my age.
Unfortunately not, my report previously as <.006 and now just says .014
My PSA numbers include those same results. I was informed that .006 was the lab's previous cutoff for undetectable, and the new one was .014; in other words, you are golden. Enjoy it.
I have had uPSA (ultra low) tests done all along...have been on vacation from ADT now for 15 months after being on HT for 21 months...uPSA has been steady at 0.006 except for one test which was 0.14! I went back one week later, retested and it dropped again to 0.006...you may want to retest...
Then its PSADT doubling time that matters...if its less than 15 months its a bigger issue than othewise...but, retest and see what happens...make sure your asking for the uPSA assay (test). TNX
healthunlocked.com/active-s...
agree, getting retested tomorrow.
Just curious. I assume that you had your T measured each time. How did it recover after you were taken off the HT?
Not sure who the question was addressed to...my T...well, 1st thing is that no one bothered to remind me (tell me) to get my baseline T measured before surgery! In fact, my PCa care was superb if you only focus on the surgery and the radiation; both done at a major national cancer center and in isolation great treatment. If you judge my treatment at any elevation above the surgical table it sucked! There was no wholistic attempt at sitting me down and ferret out what my sexual life was like, how I felt about impotence, ect...nada! So, for example, not knowing my T before surgery is handy as if I complain now to the hospital about my sexual health as they will just say; 'well, has you T recovered?' Good frigin question! HOW would I know as they never bothered to measure it going in! Luckily in my notes 1-2 years before surgery I had my T measured; it was 319! Not bad for a 64 year old, but my sexual life was great and I had good libido and an active sexual relationship with my wife of (now) 40 years...where am I going with this...
From my stand point I worried a lot about getting my T back and thought that this was the magic bullet; once its back to 'normal' its off the races! It has not worked out that way for me. My T is now 295 so statistically its 'back to normal.' But my Libido is nowhere to be found; its G.O.N.E.. I was told by a friend who has had PCa and has been treated for it the last 8 years that it would never come back...I dont know. I hope and pray that this is not normal for you all, that with the return of T you get some of your old MoJo back...for me its been a disappointment...its gone my friends and I dont think its coming back. I am now 15 months post ADT cessation; my URO told me in 6-8 months post-ADT its back, if its ever going to come back...oh well, next life...
So if your new at this, #1, get your frigin baseline blood measurements before your altered (treated)...pay for the darn thing if your Dr does not want to do the tests. Get PSA (yeah, I dont have my PSA pre surgery), T, Hemoglobin, A1c, Glucose, Vit D...get an entire battery of tests (PS, get a Dexa bone scan as well). Establish where you are before you start this journey. #2, avoid ADT if you can; do not take it as a prophylactic...only use HT if you need it and if you will benefit from it. Not all men need it and not all cases benefit from ADT use...ADT is a killer of sexual health; it will end your sexual life permanently...it did for me. BUT I needed it and would take it again only this time with my eyes open. See this post if you have had a RP, followed by sRT and are thinking about ADT treatment...it may not make a difference unless you are a particular case...
healthunlocked.com/active-s...
healthunlocked.com/active-s...
What's life like without Libido? Liberating in a strange way...my wife of 40 years is not happy that its gone, but I wonder is she is not 'glad' in some small way...she has had low/ no Libido for over 20 years after her hysterotomy...go figure, her female URO never told her to take Estrogen after her procedure to maintain sexual function and without it her Libido was wiped out forever (she cant restart Estrogen now to restore Libido as it would be potentially life threatening)! So we men think we are the only ones to suffer this cr#p...nope! Our Dr's worry about saving our lives and any other peripheral concern, i.e., sexual health, ect, is NOT their problem...that has been my experience.
Sorry for the long post...Rick
This is a great number. Enjoy life!
VanHell'n Want .014 Lower? Next test take one foot off the scale.............
Good Luck, Good Health and Good Humor.
j-o-h-n
I am an MD Anderson patient and their stance is that anything below 0.1 is noise. They don't even show a number below 0.1. Test just comes back as <0.1
As I share, I had six cancerous pelvic nodes removed by ePLND at 0.13, including left para-aortic node. Cancer had to be present at <0.1 - and not simply inconsequential noise. We face so many disparities with this beast. I consulted with MDA Houston, twice; at times I prefer to be out ahead of clinical guidelines.
0.014 is as low as my oncologist test equipment will go. My results always say < 0.014. My Urologist equipment won't even go that low....- 0.04...He considers <0.04 undetectable.
Update, I retested last week and results are back to undetectable <.006. Yeah!!
Rising PSA - When to be concerned?
Psa concern
First PSA test ever and concerning results
Bone scans show no change in mets, but PSA rising
Cabazitaxel update and variations of PSA
