Just watched a Scholz (PCRI) video posted last week about PSA. He said multiple times that PSA should reach a nadir of <0.1 after 4-5 months on 1st generation ADT and that if it didn't "something's wrong, that is an unusual type of prostate cancer that has some hormone resistance and studies over and over shown at the prognosis of those individuals is for lower cure rates or more recurrence."
Any thoughts on that statement in general, not related to my own case mentioned below?
update: Tanya Dorff at City of Hope answers a similar question Darryl asked in the video he posted below, her thoughts are at the 23:17 mark.
The above is all I'm really seeking in this thread...feel free to comment on what's below, but that's not really my point here....
My personal interest in this is that I already know I have an unusual (rare) cancer, it's ductal type, that never expressed much PSA (1.1 highest ever until TURP surgery caused trauma), but my PSA after 5 months on Lupron was still 0.944. Wondering what not making the nadir in that timeframe means in this situation.
I was on Lupron only from August to early January, when I started Triplet Therapy at City of Hope. Interestingly, after 4 weeks on NUBEQA and 3 weeks after first docetaxel infusion it dropped to 0.186. After 2nd chemo, down to 0.085, and after 3rd chemo 0.047.
I don't trust PSA as a good indicator of my metastatic PCa in the bones, since an actual bone biopsy showed adenocarcinoma that was PSMA-Positve and PSA-Negative, but it's still an interesting thought journey.
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If you have bone mets you should not have ADT monotherapy but a combination of Zytiga, Apalutamide or Xtandi combined with Lupron. This is the current standard.
Yes, I am on Triplet Therapy with Lupron, NUBEQA, and Docetaxel since early January. I mentioned that in my post 4th paragraph, but I'll edit it to be more clear. (It took 5 months to get on NUBEQA though because my first MO was an idiot who dragged her damn feet on everything, saying the Lupron protected me well enough to go slow.) I have to thank Tall_Allen for nudging me in that direction and switching docs.
So, having bone mets would negate Scholz's statement about reaching nadir in 5 months, even for "regular" PSA expressing cancers? Is that a volume thing?
I looked at the transscript, he says: "... they're starting on Lupron or firmagon to try and enhance cure rates. Usually in combination with radiation. The PSA within the first month should generally drop about 90 percent. ...... You'd like to see the PSA go to less than 0.1 within four or five months." In your case you were offered radiation but you did not get that. So this does not fully apply to you. You wrote: "Met with Radiation Oncologist on 09/29/2022 who won’t start any treatments until after bone biopsy, but says to expect: 20 low dose sessions aimed at prostate, seminal vesicles, and I think she said lymph node, 5 high dose (SBRT) sessions aimed at all the bone mets in pelvis and sacrum and 2 high dose sessions aimed at the small mets in the lumbar spine. I think one should not rely on systemic therapy only and would see that I get this treatment.
You already know that you do not have a good prognosis. You have bone and lymph node mets plus a ductal carcinoma. So what Scholz mentioned you do not need to consider. See that you survive the next ten years.
As I mentioned to Ed, a friend just got diagnosed. I’m sure he’ll have questions for me. That’s why I watched the video, not to evaluate my own prognosis, but to see if I should suggest it not sure what my friend’s diagnosis is yet, or the first treatment recommendation he received
I hope to live 10 more but don’t expect it.
I rambled on about my situation unnecessarily and confused the purpose of the question.
"... they're starting on Lupron or firmagon to try and enhance cure rates. Usually in combination with radiation. The PSA within the first month should generally drop about 90 percent. ...... You'd like to see the PSA go to less than 0.1 within four or five months."
Not looking to quibble, but we’re interpreting that differently.
That section of the video is specifically about 1st generation ADT and how PSA is affected by it. Scholz says USUALLY IN COMBINATION WITH RADIATION, indicating it’s not necessary for the ADT impact. The whole section starts off with “PSA response after hormone therapy has been studied for 30 years”, not “hormone therapy with radiation.”
Then at the 2:10 mark he says lower cure rates “if they go on to radiation.”
I’m not the sharpest tool in the shed but it seems pretty clear to me that in the context of that whole section his point is nadir in 4-5 months just from ADT alone.
I confused the whole point of my post by including my personal details.
Yeah, definitely trying to get his details. His son, also a friend, is a wreck. I know he has a treatment plan suggested, but is wisely seeking a second opinion. His son-in-law had PCa at age 45 that was treated with surgery only, no ADT, 10+ years ago with no recurrence, but sadly permanent erection and ejaculation issues; makes me think my friend was recommended surgery and his only experience with it had less than desirable results.
Research has shown that a long, slow decline to a nadir of less than .2 @18 months or more is the best for prognosis. But that's "best case scenario" and most of us aren't going to fit into that category. We all have to deal with whatever we get. My PSA nadir was above .1 at 5 months and never got below that, and here I am 7 years later. So you have to take all of these predictive markers with a grain of salt.
It sounds to me like you've gotten a pretty good reponse so far. Just have to take one day at a time.
Thanks Ed, you're right, most here do have bad case scenario cancers. I gave up watching Scholz months ago because he really seems more targeted to the less advanced cases on his YouTube, but I did learn a lot from him that I consider valuable back when I started all this.
The video this morning just popped up in my feed, and since a friend just got diagnosed with PCa this week, decided to watch it out of curiosity on the PSA topic.
Also, I think there's always a part of my subconscious looking for more indicators that my first care team were pretty clueless about PCa beyond simple in the gland only stuff.
IMO- you have the right plan and you're doing great with it. Tanya Dorff at COH knows a lot more than any youtube video. Ductal is slow to respond, but as you've shown, it does respond to intense use of medicines. Your cancer expresses some PSA, obviously - enough that it can still be used as an interim biomarker, but I'm sure she'll want to eventually check it with a scan.
Thanks Allen. I agree, I couldn’t have asked for a better doctor than Tanya Dorff, and I’m very pleased with treatment from her so far.
From her original diagnosis and treatment plan, additional PET scan for staging after chemo is planned (or sooner if indicated) as well as bone scans to see if density issue orc treatment for that needed.
For GP24: My partner asked at the original consult if radiation was in my future too and she indicated not necessarily. Time will tell.
She was looking at trials to include me in. Yale’s SIMP was one, but then she realized I’ve been on ADT too long to qualify.
She is really plugged into trials, so if there is one that's right for you, she'll find it. I'm impressed with the Xofigo combinations, but by the time you're ready for the next therapy, there will be many more.
Yea the first time I saw Darryl I said wow I like this guy lol. Seriously though.
Something brought up in the last couple minutes of this video reminded me of what a brother (Adoh) here on the forum said that rang a bell with me. " the diagnosis took away the life I thought I was going to have".
Great interview! I was a patient of Dr Dorff back in 2008 I believe when she was at St John's Hospital in Santa Monica. She had taken over patients of Steven Tucker who had moved to Singapore. I followed her when she went to USC. She was such a great doctor for me. However at the end of 2010 I had to switch to Roswell Cancer institute in Buffalo as I live near there. I miss her. Still follow her videos when I can. I have had PCa for 20 years now. Oodles of different drugs and vacations from treatment. Still have all body parts and sexual function when off drugs. PSA has been low as .02 and high as 70. Initial PSA in 2003 was 14, Gleason 7, 8 out of 12 cores filled with cancer. Latest PSA 20 years later is 22. I have always put quality of life over length but I am 72 now so all things considered I have had a good run.
OK, for those who weren't sure Darryl 's video posted here was relevant at first, at the 23:15 mark Dr Dorff states that the dividing mark for a good longevity vs a not so good one is that after 7 months of treatment if the PSA is <0.2 the prognosis is better (in some cases 12 months is the nadir point).
Thanks Darryl, that's a great 2nd opinion to Scholz's comments.
For those relatively new to this, it’s hard to decipher this article. Any way it can be summarized for the layperson? I’m interested on what to expect for a nadir amount after being on trelstar and xtandi for 5 months, followed by radiation beginning 4 months after initial xtandi and trelstar. If it takes 6 months to a year to breakdown and kill tumor by radiation, why would the nadir be found sooner than that? wouldn’t the lowest psa be when the tumor is no longer found on scans? The initial tumors that are being treated? 20 days left on radiation, then psa ( the 2nd since treatment initiated.) Hope I made this clear, sometimes this is hard to put into text. first psa at diagnosis 23 (was collected about an hour after digital exam) 1st psa after 3 months of adt and trelstar treatment 0.12
In all honesty, I'm not sure the value of this information anyway. We are all individuals and statistics don't really predict our future. It's interesting information, but we are stuck with whatever we have anyway. It's not like we have a choice. I think you just have to file it away in the "interesting information" box.
Thanks. I didnt chime in here and I've seen/heard this time to nadir before. I like to turn the other way from this information and just hope eventually one of my treatments will put me in the outlier category but so far not.
My 1621 PSA came down to 8 or 9 rather quickly within 4 or 5 months and stayed there for about 10 months (peace trial wasn't completed yet etc. so I didnt get Zytiga w/my chemo).
Then I went on Zytiga which was of benefit for about a year....PSA came down rather quick to a nice low of 1.2.
Rechallenge of Docetaxel didnt pan out a few months ago. Went on Xtandi couple months ago and PSA dropped in one month from 114 to 49 but PSA check 2 days ago and PSA is still at 49. And I feel my cancer in mets and stomach issues. Not as bad though as at the 114PSA.
0.2 does seem to be the significant mark. In another vid, Dr. Scholz also said that above 0.2 indicates some cancer that needs to be snuffed out. In same vid he also said with or wthout radiation. The first question came from someone who had triplet, ie radiation, 1st and 2 sd gen ADT. Other studies also indicate with prostate in place, 0.2 seems good. 0.1 or less as in your case presumably is better. 😊
My low PSA scenario is somewhat like yours. They couldn't find where or what caused my PSA. I was part of the PSMA GA68 trial scan at UCSF. Before my robotic radical prostectomy I was 10.2 after I've never been over 1.9. My PSA is noted in my history.The 1.9 was the level I had at the time of trial scan. That found multiple lesions (more than 10) in both lungs. Metastasized to my lungs only. Immediately after I went on Zytiga and Lupron. Stayed on it for 2+ years. Consistent readings during that time of <0.14. I asked for a QOL vacation and have been on it since .
((Reason for my vacation:
I am now also a stage 2 /18 year breast cancer survivor. With that I had a radical mastectomy, lymph node removal, chemo, radiation and 5 years of tamoxifen. Tired of drugs being in my body and the cause and effects they've had.))
My oncologists have agreed that I always do ultra- sensitive PSA for my blood testing. I do those every 3 months. Scan with contrast every 6. End of 2021 tests stopped showing < less than value. From <0.14 new PSA was 0.02. That has been the last 5 readings. Test beginning of this month 0.04 .
PSA is not the driver. Maybe just a slight indicator of "something". Scans are the best option. I'm honestly blessed that the trial scan found the lung nodules. Even more so that I've got oncologists that are on top of all this.
"PSA is not the driver. Maybe just a slight indicator of "something". Scans are the best option. I'm honestly blessed that the trial scan found the lung nodules. Even more so that I've got oncologists that are on top of all this."
Understanding that I'm an outlier case, I shudder to think how far my cancer would have spread in the last 6 months if PSA if I hadn't had urinary retention that required 2 TURPs if PSA were the only thing looked at. Took a biopsy of actual visible cancer cells that had spread from the prostate into the bladder neck and bladder in the 4 months between TURPs to get a cancer diagnosis.
If you check my profile you'll see that my husband was diagnosed Aug 2017 with bone mets and PSA >677. He has yet to go below 1 PSA. Has continually gone down- but very very slowly.
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