i have reached .032 five years after RP. Was <.006 for 2 years and then <.014 and then a slow steady climb to .032 My current Dr is saying do nothing until .2 but I am not all that comfortable with that approach. I left my surgeon whose practice is too busy and changed to someone who seems more solid. But he wants to wait. Can anyone here suggest some steps I can take now? I should add that I had an extended lymphectomy at my RP and all 17 abdominal lymph nodes were negative. I only get ultrasensitive psa test. I did have 2 positive margins.
Slow PSA rise after RRP. Seeking advi... - Advanced Prostate...
Slow PSA rise after RRP. Seeking advice for next steps. Dr seems in no hurry :-(
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Jcronin454
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I practice mindfulness to help prevent unwarranted anxiety. It doesn't stop it completely, but it seems to resolve more quickly.
In particular, take some time to completely clear your mind. Read about meditation; things like focusing on breathing or doing a body inventory (think about your feet, how do they feel? think about your ankles... etc). Doing this pushes out the negative feelings and ruminations. There are scientific studies to say meditation has a positive impact on your overall well-being.
I get very upset on an almost daily basis about something, usually ordinary, and if I let that build up it affects everything. Practicing mindfulness and meditation definitely helps.
you sound like my twin!
Helpful if you complete your Bio info and, path report, Gleason, age, etc.
I’m some years ahead of you.
Prostatectomy 8 years ago. GS 3+4, PSA < 0.006 for two years, then slow rise. Now at 0.36.
Everyone is different.
Diagnosed in 2018 at 7.2 PSA
3+4 GS
RRP with two positive margins about 2-3 cm.
Decipher - medium
No tx other than surgery so far
I am 72 now 67 at surgery
Live in NY
Surgeon: Dr Ash Tewari Mount Sinai
Switched recently to Dr Douglas Scherr Weill Cornell
you sure that your margins were really 2-3cm and not 2-3mm?
—Manute
I’m 83, Decipher 0.69 high risk, PSA at surgery 6.
Looks like we maybe following the same script.
Since I hit BCR two years ago 0.2, (some say it should be higher than that for BCR), I’ve basically been doing AS of sorts. Three MRIs since then show small enhancing nodule in prostate bed which has not been PSMA avid and remains essentially unchanged in size.
Been offered RT and +/- ADT. But I have not chosen that route
I have lymph edema since the # 24 lymph node dissection (all negative) controlled with support hose.
I’ll probably not do either the RT or the ADT. They also have side effects.
Currently looking into needle biopsy to make definitive diagnosis.
If confirmed may be offered focal ablation.
Stay tuned and don’t let it control your life. Easier said than done. My guess is you’ll do well. Just be responsible and don’t over react as that could make things worse worse
BTW I had extensive multifocal EPE.
Tumor was in an unusual location surrounded the ejaculatory duct.
Large prostate of 78 grams
TV 12% and 10 % pattern 4.
Do you have those numbers available?
LowT I have read your opinion with interest but I am not sure I agree. All the studies say you do just as well waiting until 0.1. I am not sure all this info really helps you. To me this guy would have been better using the low sensitivity test. He could have gone several years thinking he was cured.
As shared I had six pelvic mets removed at 0.13 - this after RP and salvage RT. They had to be there below 0.1 and who knows how much lower. There are all kinds of studies but given that the death rate and number of men on ADT are projected to rise, not fall, I choose to be out ahead of common thinking.
Steps? At 0.03X my mindfulness includes carrying on with bi-monthly testing, annual imaging and liquid blood biopsies. This is because I rely on <0.010 post RP, have learned to not give this beast time and obscurity, and if it comes to it, I wish to defer long term ADT then possibly CR and chemo for as long as possible.
I believe I understand the broader medical communities desires to wait - but I will not because I do not see this devastating to too many men disease as a chronic illness.
After my third treatment, ePLND which involved thirty-one lymph nodes including the common lilac and paraortics (what I consider extended), I realized <0.010 for the first time. This held for two years. Then < dropped and a slow steady 4 year 7 month to date rise began through 0.01X, 0.02X and holding 0.03X for last 39 months.
My recent Pylarify PSMA PET identified a 2 cm liver lesion. Subsequent MRCP MRI with pancreatic protocol confirmed finding. Tuesday, I have a biopsy to affirm whether it is a metastasis or atypical hemangioma (benign vascular tumor).
Additionally, my current liquid blood biopsy identify a TP53 somatic alteration - a non-specific cancer marker. So whether this liver lesion is metastatic or benign, further investigations are required. I hope this helps. All the best!
my new Dr suggested moving from every 3 months psa testing to 1 year which I thot was nuts. I decided to go for 6 months this last time because the 3 month routine was getting me down.
Absolutely no one is speaking with me about imaging or blood tests. How do I get my ‘team’ to become more active. I understand that .03 is low and maybe too low to detect… and it could possibly come from noncancerous prostate tissue… but it is very very clear the number is going up and I want to figure out how to step up the search. Since I had 2 positive margins it seems likely the prostate bed near the positive margins are suspect.
My overall RP pathology was pretty favorable with one compromised margin and an RP nadir of 0.050. How easily I could have been thrilled, thought no cancer remained. As I share, I have been 0.03X range and lower values for over six years now. At this rate it could take more years to get to 0.1 and even longer to get to 0.2. So, why worry, why do anything? My answer, at 0.13 my salvage extended pelvic lymph node surgery using frozen section pathology method confirmed six cancerous pelvic lymph nodes including common iliac and para-aortic. I have spoken with a number of doc’s who could/would not believe/accept how much active cancer I had. I always ask, well, how many of your patients at 0.13 had successful imaging and salvage ePLND? The answer is always none.
What got me down about PSA testing was need for doc appointments that necessitated waiting in lobby, then weight and bp checks, then answering questions like do I feel safe at home, then waiting more; all to get an order for the test. Then, off to lab and return for another appointment for the result. So, I began self-directed self-pay testing through one of the online services when and where I wanted (I meander full-time in my RV). The results came straight to my inbox independent of any doc. Every month or bi-monthly is my practice to minimize my anxieties of not wanting to be one of the men who went from “undetectable” to say, bone mets. Seemingly all of the sudden?
Regarding .03 and your inactive team. Prior to my RP, nearly nine years ago, I chose to rely on <0.010 as best indicator, despite the very common values of 0.2 and 0.1 for CR. Relying on <0.010 was a critical criterion in the selection of my surgeon, subsequent radiation oncologist and again with the surgeon I chose for my ePLND. I believe this focus is key to my doctors taking actions sooner than others.
Today, I use 0.03 as the value for taking further investigative actions and this is another critical criterion for my medical team. I will say it takes a lot of effort to find doc’s willing to act sooner. I appreciate most doc’s (are forced to) focus on thru put, coding and billing, which makes patients such as me undesirable.
Another barrier to action is, IMO, the false flags of unnecessary imaging because clear results are seen as a failure. IMO this thinking is a carryover from the long-established ‘unnecessary biopsy’ mantra. One of my lessons is we may have to try several different contrast agents/types of imaging to have success. This leads to more justification efforts with insurance provides and costs; more deterrence. I self-advocate my focus - to stay ahead of this beast, not to wait for many easy to find mets. I am grateful to the doctors that work with me.
Blood biopsy testing is quite new to prostate cancer. Although Medicare approved, doc’s are slow to pick this up and this makes sense. They were not trained on this. It is not routine in their practice (so no volume based pricing incentives?) As a patient I have experienced the multi-step process that takes staff time. Another reluctance is what to do with a positive test such as my recent one. The TP53 R248Q somatic alteration recently picked up (not in my previous tests) is a mutation coming from almost 'any type of cancer'. So again, what to do is time consuming and inefficient. I rely on hematologist for this testing.
As for .03 coming from ‘left behind’ noncancerous prostate tissue. I am not aware of unequivocal support for this thinking nor means to prove this. IMO, this is head-in-the-sand thinking that pushes the questions/challenges further out, sometimes a long time. And often at great patient risk.
Hope all this helps! I know there may be some (unfriendly) dissents with my share. This is okay - I look out for me. Best! Keith
You mention a PSA of < 0.03 as a target/goal. What have you done re actual treatments when you have exceeded that? You mentioned RP nadir of 0.05. That was greater than your 0.03 cutoff? So, you had additional treatment when you determine that 0.05 was your nadir?
Is the 0.03 based on any study?
Clarifying – prior to my RP (nearly nine years ago) I settled on <0.010 as the value I would rely on as best indicator (not ‘undetectable’), and values above concerning for cancer remaining. I also decided I would not wait until 0.2 for definition of recurrence and that I would take next treatment actions no later than 0.1X. My objective since my RP has been, if it comes to it, to defer long-term ADT, the possibility of CR and chemo for as long as possible.
My RP nadir was 0.050. When my PSA reached 0.11 I had salvage RT to prostate bed which resulted in a nadir of 0.075. When my PSA was back up to 0.13 I had salvage ePLND which resulted in a nadir of <0.010.
After my ePLND I was no longer willing to give this beast time and obscurity. Through consultations in Europe I became aware imaging was offered to post RP private patients when PSA rose above 0.03. As my post RP nadir was 0.050 and cancer indeed remained I set 0.03X as value when I would begin investigating with imaging. In 2021 my PSA rose into 0.03X range so I started imaging and have since added liquid blood biopsy testing to my efforts to stay ahead of this beast.
I am not aware of any studies on 0.03 as a key marker. It seems 0.2 is universally accept as indictor of recurrence post RP. Increasing 0.1 is cited. My question is, if it is cancer at 0.2 and 0.1 how can it not be cancer at lower values? Given the volume of cancer my ePLND confirmed at 0.13 I concluded 0.030 is a variable value to begin further investigations. Tomorrow, I am having a biopsy of lesion on my liver, identified by Pylarify PSMA at 0.033. Although the imaging report and subsequent MRCP MRI with pancreatic protocol indicate concern for metastasis, I am certainly hoping it is nothing more than an atypical hemangioma.
I’ve seen this Kang study with respect to the 0.03 threshold. It may not be precisely matching your situation, but I thought I’d pass it along
ncbi.nlm.nih.gov/pmc/articl...
Thanks! (maybe I have seen this and 'forgot'?). The consultations in Europe I referenced which taught me about imaging at 0.03X were in 2018, starting at Royal Marsden London. This article is from 2015. I had no reason to doubt the doctors advise.
Thanks. However, it seems to me that, with your attempts to find the cancer at values less than 0.2 PSA, you are MORE likely to be asked to start ADT earlier???? AS you probably know, you are operating on an older hypothesis, about the benefit of delaying ADT until some future time.....I don't think studies in the last 10 years support that hypothesis....but maybe you know of some that do. Delaying is a different strategy than intermittent or BAT!!
Anyway, thanks for further clarifying your story. One way to avoid ADT is to avoid PSA testing, or biopsy, or actual treatment....... I stumbled unintentionally into the 3rd option...now somewhat terrified I waited too long, even with recent RT + ADT for Gleason 4+5 and PSA had increased from 8 to 13 over 2-3 years.....PSMAs negative, but we know that is anything but perfect for detecting metastasis.
My response intent is friendly and in respect of Jcronin454 topic of slow PSA rise post RP and possible next steps. I shared as I have experienced slow PSA rises after each of my three treatments; RP, salvage RT and salvage ePLND.
I wish to note my understanding from your bio and posts that you have not had RP. I also note your statement “now somewhat terrified I waited too long”. My efforts are to be well ahead of common practices so that I do not find myself waiting too long.
After my RP nadir of 0.05 I made the decision that I would not wait until 0.2 to take further actions. So, to your comment about my “attempts to find the cancer at values less than 0.2 PSA…”, absolutely, this is my intent as I see no reason to let cancer grow in volume and spread before getting after it.
Let me clarify my intent with striving to delay my need for ADT. After unsuccessful salvage RT the common path is ADT and this was indeed recommended to me. As I was sixty and otherwise in most excellent health and fitness I was very concerned for potential ADT side effects, especially long-term risks to heart, bones, mind, etc.
Instead of ADT I embarked on further investigations with multiple imaging methods which identified suspicious pelvic lymph nodes. With no evidence of disease in bones or other organs I chose the path of salvage extended pelvic lymph node surgery with frozen section pathology method to reduce tumor burden and see if I could realize a PSA of <0.010. That was achieved.
As to your comment that I am “operating on an older hypothesis” I categorically reject this. As the death rate from this disease as well as the number of men facing ADT and CR are all projected to rise, not significantly fall, it is clear to me current common strategies are not overwhelming long-term effective with this challenging beast.
All the best to all of us!
OK. So at what point in your journey would you do ADT? If imaging detects additional metastases? PSA doubling time? Other?
Let us know if you find a cure for metastatic PCa...... ADT doesn't promise that, just a longer life expectancy. .....which we know is not a prediction for any certain patient.
I had/have the "advantage" of being older and more likely to die from heart problems, etc than someone who is a younger metastatic patient.
Appreciate your kind reply and discussion. This morning I had a biopsy of a 2 cm liver lesion identified by recent Pylarify PSMA done at 0.033. The Pylarify and last weeks MRCP MRI w/pancreatic protocol are indeterminate whether it is metastasis or atypical hemangioma; hence biopsy. Also, concurrent GUARDANT360 CDx blood biopsy identified TP 53 mutation which as I have come to learn can be coming from almost any type of cancer. Last years imaging and GUARDANT360 were NED.
After my ePLND over six years ago I did one year of daily 150 mg bicalutamide for added insurance as I did not think in terms of being cured. Should this liver lesion be prostate cancer treatment plan may well include ADT. If it is another cancer, (I have had two melanomas), will have to evaluate strategy. If liver is benign we still have to investigate TP 53.
Besides stopping the worrying, lose the urologists. So far they have provided you with a RP that failed and a suggestion to move to yearly PSA testing. This may indeed be nuts, but could it also have been a response to you ‘getting down’ about testing every 3 months?
Regardless, you will get better answers to your questions and a much better quality of care overall with an oncologist who specializes in prostate cancer.
Sharing a different perspective, I went (back) to urologist for salvage ePLND following failed salvage RT with oncologists. To date, the ePLND has yielded a much better quality of care and life than STAMPEDE protocol that was recommend to me. All the best to all of us fighting this beast! (Your bio path is interesting and informative).
Seems you are dissatisfied with your Doc? What is preventing you from seeing someone else? Financial concerns? You can use Google and pubmed to find studies that are the basis for using the 0.2 PSA as the cutoff for BCR. I doubt it is a number that was just randomly chosen. Also, ask your Doc for the basis of that 0.2 PSA?
You have had Docs at 2 of the best institutions in the country......most men do not practically have such access.
You could also look for studies that address RP positive margins and how that might impact your future results and treatment plan going forward. Have you been very precise in addressing all your questions to your Docs? Perhaps they are minimizing your concerns, and that will make for an unhappy patient!!!
I have found that my Docs will consider the studies my research has found...of course some Docs are more willing than others, and if I'm unhappy with a Doc's approach to my questions/research, I will look for someone who is better in that respect.
With all the above in mind, fearing the future after cancer treatment is universal and I'd guess that few victims go on worry-free.
My comfort zone is up to 0.05 included. Wasn't lucky like you, so at 0.17 decided to take action my very personal way. Full details in my thread: "An engineer's Bicalutamide maneuvers".
You might want to look at a paper from last June where they re-reviewed the post RP pathology slides of a large cohort and found 5 'unfavorable histology' patterns. They found that those patients who didn't have any of these 5 patterns never developed any metastasis and none of them died from prostate cancer. So, if you don't have any of these you should definitely not worry, you should just try to wait patiently to see if your doctors think you should act.
From the article:
"Unfavourable histology is defined by any classic Gleason pattern 5 component, any large cribriform morphology (> 0.25 mm) or intraductal carcinoma, complex intraluminal papillary architecture, grade 3 stromogenic carcinoma and complex anastomosing cord-like growth.". So, if you don't have any Gleason 5, large cribiform or intraductal pattern (plus a couple of others) you shouldn't worry!
Abstract: pubmed.ncbi.nlm.nih.gov/388...
Full text: onlinelibrary.wiley.com/doi...
Note that having one of these does not mean you will definitely have metastasis - in the study population, around 48% of those with unfavorable histology developed metastasis, and 0% without unfavorable histology developed mets. Note also that the patients received salvage radiation if they needed it, so you should still follow standard of care. Finally, note that lymph node invasion was counted as a metastasis.
Interesting good share - IMO one of the values of HU. I have just reviewed my RP pathology comparing to these two links and not one of these patterns is mentioned in my report. And yet, my cancer spread as far as my para-aortic lymph nodes.
Maybe it is just terminology - I do know know enough to correlate words in my path report as equivalent to one or more of the five patterns. I will be asking.
It took me 6 years to reach a PSA of 0.2 after my RALP. This triggered a PSMA PET scan which was not definitive. Over the course of the following 12 months I ended up having 5 PSMA PET scans including one with an experimental isotope. Still nothing definitive. I was then told to wait until I hit 0.5 which was later upgraded to be 0.6.
At the 9 year mark my PSA hit 0.66 which triggered another PSMA PET scan. This time they decided that they had a target and I am now having radiotherapy on that target. 3 down 2 more to go.
So as you can see, even the 0.2 magic number may not be revealing enough.
Our experiences with disease progression seem different - all the best to all of us fighting this challenging beast. As I share, two years after my RP, one year after my salvage RT, at 0.13 imaging identified five suspicious pelvic nodes - six confirmed cancerous including common iliac and para-aortic. Fortunately still NED in bones although tomorrow morning I have a biopsy of a liver lesion identified by recent Pylarify PSMA.
Which insurer covered 5 PSMA PETS over 12 months?????? Medicare wouldn't as far as I knw?
I am in Australia. The first two PSMAs I paid for at roughly US$500 each. Our government then included PSMAs in the treatment covered by our national health care system, so I have paid nothing for the last 4 scans.
Australians love our healthcare system which every citizen or permanent resident is entitled to. Coincidentally it is also called Medicare.
I had medical coverage, but the retail bill for PSMA PET was > $10k !!! 50% of that was for the tracer Pylarify. I don't know what our Medicare is paying clinics for the PSMA PET...... most likely much less, but I'm sure much more than $500.
How too explain the huge difference between AU and USA?
How much is loaf of bread? Gallon of gas? Compensation for average Doc? Linear accelerator?
That is a truly shocking amount for a PSMA PET scan. The medical system in the US along with private medical insurance certainly appears to have gotten out of control. I wonder how many people in the US actually understand how other similar western countries provide excellent health care at an affordable cost.
In Australia we pay a 2% tax on our income to get our excellent Medicare system. We can also optionally choose to have additional private insurance that provides access to private hospitals, but you will get excellent care in the public system.
A plain white loaf of bread is US$2.00
A US Gallon for unleaded is US$4.08
Doctors are some of our highest earners, although there can be a big range depending on specialty. Typically a GP would be US$150,000 and a urologist US$365,000.
well, for bread and gasoline, apparently similar prices. Believe Docs in USA make more, but don't think enuf more to explain the difference in medical bills. 2% of income for all your medical needs..incredible. As you may know, medical accounts for 17% of US GDP. I have seen 10-12% in other developed countries.....I imagine all the good things we could do for folks here were we able to redeploy some of that GDP. I don't believe private insurance here is responsible for cost of medical care. The negative of insurance is that the consumers of medical services pay little attention to the charges!!! Then again, having insurance encourages folks to see a Doc when needed.....not avoid a Doc because of the bill!!!
As I said, I am not at all certain of the actual revenue perscan that our clinics receive for PSMA scans.......quite probably the number is lower than quoted in a billing. Medicare here probably pays much less. Everyone should pay the same for a certain medical service, but apparently different patients and insurers pay different amounts for the very same services. CRAZY!!!!
RNs here now earn $80k, and sometimes much more!!
Meanwhile, I am STRUggling to find a clinic/Doc who will see me and give me my scheduled 3 mo Eligard at the end of this month...what a discouraging story!
I wouldn’t recommend any one do any specufic treatment. I only share my experiences.
Every case is unique and approached with that mindset. Also a unique context
Sometimes treatment can be worse than the disease.
I have an unusual hormone profile and have osteoporosis in both femoral necks so ADT and RT could and most likely make that worse.
I continue to observe the situation and made as best informed choices along the way that I can. I’m also reminded that most men die with PCa and not from it. And most don’t know they have PCa.
An interesting journey for sure.
i looked at several studies....over 12 months, adt reduced BMD by 3-6%.
Bisphosphanate treatment lessens that decrease, or even very slight increase... maybe 1% chance of a jaw problem however. Have not yet taken time to find studies re actual fracture rate with and without bisphosphonate. maybe youknow?
Greetings,
Maybe a good idea to copy your post above (Diagnosed in 2018 at 7.2 PSA 3+4 GS and etc.) and paste it in your bio. Since you're in NY (City) you may want to switch over to Sloan Kettering although Dr Douglas Scherr at Weill Cornell used to be at Sloan and has a very good reputation. Anyway, try to stop all that worrying and live..... Keep posting here, it's a helpful site with smart members (excluding me).
Good Luck, Good Health and Good Humor.
j-o-h-n
Thx for your note. I believe i have my worry under control and I am living my life as fully as I can. But my concern is that there is no plan or road map while it is very clear I am going from .009 to ..018 to 0.3 after beginning at .006 for a couple of years. I switched Docs because the surgeon who did the RRP became a factory. I am just on boarding with my new Doc who does have a great reputation but is saying “it could pause here. Let’s watch. There isn’t anything to do until 0.2 Someone posted an interesting paper that says if you begin engaging a treatment approach at .03 the odds of beating it are substantially higher than .2
I am
Just not sure what I should do now in this new practice to get a plan going that isn’t waiting until .2
I am at a similar stage as I’ve been undetectable since RALP in January 2020. Latest PSA in April and July 2024 is at .03 and .02 respectively. My MO believes I may be headed towards BCR but wants to do nothing until PSA is .20 - I should note that my pathology revealed 3+4 with clear margins but slight focal EPE. Not sure how comfortable I am waiting for PSA to rise before taking any action…
Why not just start taking BROQ, per the below study? It gives you dose to use to get those results. No guessing. No downside other than a few $$. Result was it basically stopped progression. You can also check out study on their website broq.life. Then just enjoy life.
This post may not help but maybe it will put what I read above between the lines into something you can think about besides possible cancer treatments and when to do them.
Reading this and other posts like this I have come to classify the posters into perhaps three broad categories.
First, we have the vigilante that seem to worry about the smallest change in PSA. I classify these as perhaps being driven by fear of the unknown or as having an interest with science and medical testing.
Second we have the ones who are never happy with their doctors and spend time shopping and looking for a better doctor or a more compatible diagnosis.
Third we have guys that continue to live life knowing that today is the critical one and that the future will come with or without us.
Many years ago I had the privilege of putting together a symposium on being a POW and aerial combat experiences from WW2, Korea and Vietnam.
One of the speakers was a Professor of Philosophy whose colleagues, wife and family never heard or even knew that he was a POW. This was his secret.
I met with him many times before he agreed to relate his story and I assured him that he could leave the presentation or not even show up if it was two much for him physically or emotionally to relive his experiences as a POW.
After that day he wrote me a personal note thanking me for the experience to share his story for the first time. Over the years I have learned much from hearing and working for other POWs and combat veterans.
I had always wished that when my turn came that I would be able to muster the courage and honor they displayed under amazing hardships.
Well my and your time has come!
Mgtd, I really live my life the way I want. Full-time wandering RV'er, hiking, mountain biking, fishing, deep woods tent camping and glassing for wolves, pumas, bears, elk, moose etc. Visiting with friends and making new ones. Last month added a new-to-me sailboat to my toys.
All this fun whilst still diligently tracking my PSA without fear and with further investigations including annual imaging and liquid blood biopsy testing. Also, adding/changing docs on my medical team as needed.
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