My husband was diagnosed in 2019. Gleason 7 (3+4) .RP in Sept 2019 & BCR in May 2020 at PSA 0.28. A PSMA Pet scan showed a lesion in the prostrate bed & a suspicious spot on T10. He had 38 rounds of radiation & SBRT to the spot followed by 36 months of ADT. ADT ended in july 2023 & 3 successive PSA tests have been 0.01 , today it was 0.04. I am terrified now. I don't live in my home country & cant stop my mind going to a dark place. I have read often enough that we should wait until 0.2 to do anything & our oncologist is not too concerned at the moment. Any advice?
one year post ADT : My husband was... - Advanced Prostate...
one year post ADT
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sandystarfish
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0.04 is still undetectable in Europa, so I wouldn’t be afraid about the value of your husband.
0.2 is for BCR after RP. You are passed this stage, doesn't apply to your husband any more. The next milestone in the SoC cookbook is PSA 1.0 or 2.0 or 4.0, depending on your doc's magic number prefererence, that will signal ADT for life. PSA of 0.04 isn't unreasonable after 36 months of ADT and rising, from castration, Testosterone. In fact, has the T been measured along with PSA? If not, your #1 problem is your negligent doc that needs to be addressed ASAP. Don't be teriffied, the "one size fits all" recepies of the SoC cookbook are known to fail, yet, patients survive.
T was tested last time around came in at 0.5
Units? nmol/l
with respect, do you have a copy of this international 'SoC cookbook'? IMO it is a myth of the industrial medical complex to treat prostate cancer as a chronic illness, not a disease. Seems to me we men with and dying from this disease are seen as acceptable losses.
It is not hard to find SoC. They are published by international organizations. They are very conservative meaning that uncontrolled trial ms would not be given much weight. I do not understand your comment about the industrial medical complex. SOC is written by a group of experts in the area. Pharma has no place in these meetings. In my experience they do not affect SOC. Doctors are trying to prolong life but as yet there is no cure so death is a likely outcome but not acceptable losses.
kindly share a source or two?
Tall_Allen's blogpost about SoC: prostatecancer.news/2016/08...
For example NCCN guidelines:
NCCN guidelines (accessible after creating a free account): nccn.org/professionals/phys...
NCCN guidelines for RT recurrence - see attached pictures.
You may even ask ChatGPT - asking "Can you give links to standard-of-care guidelines for prostate cancer?" returned links to NCCN, ESMO and NICE guidelines.
RT BCR
Appreciate the reply. As Allen's blog suggests, SoC is legally based. It also encompasses a broad spectrum of care from sub-minimal to maximum and even perhaps over-the-top care.
As you wrote SoC is conservative. So conservative prostate cancer screening for all men is not within SoC. So conservative it does not indicate ultrasensitve PSA testing is key to identifying recurrence post RP. I rely on <0.010 while others believe ultrasenstive testing should no longer be used.
Seems correct to say SoC is so conservative that the recent PSMA PET and liquid blood biopsy I had at uPSA 0.03X are not 'within' SoC. Seems rational to say my usage is below the sub-minimal level of care; but I would think still legally protected.
My salvage RT to prostate bed was within SoC - and yet it missed cancer. The Ferrotran nanoparticle MRI I had over six years ago, after my unsuccessful salvage RT, at uPSA 0.13, correctly identified suspicious pelvic lymph nodes outside of the radiation field. Unfortunately the Ferrotran MRI remains in trials - will it even be SoC?
There is nothing worth doing until PSA reaches 1.0 or increases rapidly.
Do you think we should test every month? Next appointment is 3 mths away. The Onco had mentioned PSA would perhaps rise & then stabilise.
3-6 months is fine.
Thank you TA
Any advice ; yes, offering differing views. I rely on <0.010 as best indicator post RP and see terms such as undetectable misleading and often deadly wrong; as as I see relying on 0.1 and 0.2 as a definitive value for "recurrence" after RP; this cancer does not 'recur' after RP as if it was gone and now it's back - it was still there, lurking.
My most significant science datapoint is that at 0.11, post RP and salvage RT, I had six cancerous lymph nodes confirmed by salvage lymph node surgery, including the common iliac and para-aortic nodes.
What has driven me since my diagnosis nearly ten years ago, at otherwise healthy and fit 57, is, if it comes to it, to defer ADT and the possibility of castration resistance for as long as possible.
Seems to me your husbands 36 months of ADT did not 'cure him'. If the strategy is to return to ADT for the long haul, what to do now and timing may not matter that much.
I choose to not give this beast time and obscurity, time to grow and spread. For the past six years since my salvage ePLND, I have been PSA testing every 1-2 months and have had three PSMA PETs and two liquid blood biopsy tests.
Today, I am working though findings of current PSMA PET indicating at 2.3cm x 2cm lesion on my liver and GUARDANT360 liquid blood biopsy indicating a TP53 mutation; previous PSMA and blood biopsy were clear. These findings found at uPSA 0.031, yes 0.031, well below the 0.1 and 0.2 "guidelines".
Now maybe this lesion is not prostate cancer, won't know for couple weeks when have findings of liver MRI and biopsy. But the TP53 mutation has reared its head. If this lesion is indeed prostate cancer I may go after it with surgery or targeted radiation - but today not enough information for this decision. I hope this helps. All the best to you and your husband!
You are a legend & hyper vigilant. I have a better half who has immense faith in his oncologist. To be fair his doc has been wonderful, during our journey his marker for pancreatic cancer went crazy & the doc was a star. All the best to you
What was your post RP Gleason score? If still 3+4, your husband has an excellent long-term survival probability!!!!!!!!!!!!!!!!!
It was 3+4 with mainly 3s clean margins . pNI was present. Thank you for your kind words our onco is of the same opinion & tells me not to fret
I would need to research the significance of the pNI. Please . Please Google memorial sloan prostate nomograms...they have one for post RP expectations, and perhaps evn a nomogram for post salvage.
Let us know where your hubby falls using those nomograms?
Re your MO, have you asked him/her the number of PCa patients seen each year, or number of new PCa patients annually. More the better, generally!!
We live in Malaysia. Medical care is very good & easily accessible. Our oncologist is reputed to be the best & sees tons of patients. He got us involved with the PC society of malaysia .He is super busy but very approachable. I had checked the nomograms ages ago & if i remember the results were not too alarming .
I think you would find the results are very encouraging, not just "not too alarming". I'm Gleason 4+5, if you really want to be alarmed....but even then, compared to most cancer prognoses, the longevity is pretty darn good.
From your description, sound like you should just put your trust in that MO.......and proceed as normal with your life!!!!
Thank you , thank you for your kind words. I do trust our MO but i am a natural worry wot really need to change as my bp gets elevated. Most of my fear stems from the fact we have retired in a foreign country though i should be grateful the care is top notch (most docs are UK, Singapore & even India trained)& very accessible.
0.04 is still considered undetectable but you should keep watching if it keep raising for next blood test of PSA especially when the raise in double point. Sometimes the Psa level are fluctuate so it should not be your concern too much. It could raise a little bit then go down again to your nadeer level of point. But keep watching if it continue raising after 3 monthly blood test, if so my advice talk to your Uro..thanks
Just to be sure he had his prostate removed?
He had ADT....Could you tell me what his ADT was?
Yes
Was it 3 items or one?
1-Lupron all through the treatment PSA was <0.004
Sorry <0.04. I really dont know what this means in relation to 0.01 & now 0.04
Replying as this seems to be an open question. As I share, (despite naysayers), I choose to rely on ultrasensitive testing and <0.010 as best indictor post RP, and values above concerning.
Values of <0.04, < 0.1, <0.2 could all also report as <0.010, or something above 0.010 (depends on lowest value each respective lab reports to).
After my third treatment, salvage lymph node surgery, my nadir was <0.010 and this held for twenty-three months (monthly testing). Then the < dropped and my monthly testing held 0.01X range for next eight months (X is because there is some variation in thousandths). My uPSA then held in 0.02X range for next seven months. Then rose into 0.03X range and has held steady in this range for past thirty-eight months.
Hope this helps.
I get what you mean if i was the patient I would perhaps go after it like you have. My husband hates hospitals & medication. He believes in his doctors. We are headed to Nyc & I even asked him if he wants a consult with MSK but he is not interested. There was a member on this site gourd dancer who used ht intermittently and finally went into remission at 0.05 & left the site. I hope we have a similar journey
Did they say he is hormone resistant?
No he is still undetectable at 0.04
My low was .005 but I was on 3 different hormones. I had no surgery or radiation. I had a monthly shot of Zoladex and 150mg of Casodex and 5 mg of finasteride. I did it for 13 months plus 6 months more... less 100mg of Casodex.
I am on 5 mg of Finasteride daily. I know for a fact that it suppresses DHT and DHEA. If I dont take it my PSA is 5. If I take it its 2.8. But I am not metastasized. Im 20 years away from DX.
All the best
Last year the hospital group my MO is with started showing PSA as <.1 instead of using <.0etc. He told me they test to .00 but there really is no reason to report it that way as the fluctuations were causing undo concerns.
If the number changed from .03 to .05, they wouldn’t do anything so why report it. They wouldn’t change the treatment plan until they knew where the Mets were. To know where they were, the PSA would need to higher so they could find it.
Ever hear of PSA anxiety? It can be worse than the disease. The cure is easier said than done. Simply relax and exercise or do some fun thing. No worrying is going to change the PSA number.
My case is slightly different but the same. I am a year plus out of radiation and my PSA has been steady at less then .01 as my T started to return my PSA for the last 6 months has been .04 to .05.
In my case that truly reflects the PSA nadir or lowest point so from there only two things will happen. It will go up slowly or more quickly OR it will stay the same which is the best news option. Nothing I or the doctors can do at this point. It is what it is. Simply a number!
So no need to worry about it. Only time will tell!
I know there are different schools of thought on this. I'm 9 mos post ADT. Dx and RP in 2021, immediate BCR with on positive lymph and 1 spot on hip. Did Triplet therapy (Dox/Abir/ADT). Did 24 months of ADT & Abir, ending Oct 2023. My PSA has been <0.1 since Jan 2022. Also had radiation to prostate bed and pelvis. My docs said the super-sensitive PSAs cause a lot of stress and confusion. As long as <0.1 and no detectible spots on scans, I'm considered in remission. I get PSA and PET scans every quarter and hope for VERY long holiday.
Chill out. You guys are in good spot.
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