My husband (diagnosed 8/19 with APC - Gleason 9 PSA 77 - stage four with three mets) is nearing completion of radiation treatment for oligometastatic PC (three Cyberknife treatments with subsequent five weeks IMRT - seven treatments remaining). He has been on Casodex and Eligard since diagnosis, with reduction in PSA by February 2020 to .14.
Husband had bloodwork Friday that showed that his PSA is now < .1 (i.e., undetectable) and testosterone is < 20. Of course, I’m thrilled that his treatment appears to be working, but I’m perplexed at the relatively nonspecific PSA reading. I guess that’s the limit of whatever test the cancer center uses, but I’ve seen many posts here and elsewhere with much finer PSA granularity (e.g., .01, .008, etc - and people freaking out if they go up a notch). Should we be asking for a more PSA specific test or is this as good as it gets at this point?
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The definition of undetectable depends on the lab instrument and assay used. The velocity of PSA is almost always more important than the absolute value. My oncologist wanted my Testosterone level near 300 before putting much credibility in “undetectable” readings.
Most studies show if you get to a nadir after treatment of under .1 and under 20 T, your survival odds go way up. My reading went to .01 and I asked my MO if there’s a big difference of that versus say .09. He is very knowledgeable and said no big survival differences once your below .1. So enjoy the good news and try and relax for a bit. Always hard but way worth it.
Hi schwah! May I know who is your oncologist and where is the location?
I would ask for it ..I also was getting the less sensitive test. It must be cheaper .. I have to press them every single time for it . It’s Alittle frustrating .. this is the system that I’m under. I’m thankful for all of the care that I’ve received. I was 13 yrs younger than your husband upon my diagnosis..That was five years ago last month .. Stage #4 gl.4-+4, non op ..Two lymph nodes lit up on scans . T-4 which meant that the walls of my prostate were breached with pc tumors. They blocked urethra and bladder causing k. Failure resulting in bi-lateral neauphostemy tubes and a foley for 11/2 yrs total. The good news for me was remission after 8 wks imrt and double adt . I’ve been there over four 1/2 years now. Your husband is fortunate to not have side effects . That’s a wonderful drop in PSA . Good luck to both in trying times . Take care ..Scott
Thanks, Scott. I know that you’ve been through the wringer. We are indeed fortunate that husband has had relatively few side effects from treatment. I used to joke that if I could go through menopause, he could, too - but he’s had almost no side effects other than loss of libido, decreased muscle mass, and mild anemia. Not bad, under the circumstances. Now we just hope to get through this awful virus unscathed. I suspect that you and I have very different political viewpoints, but I know that we both pray for healing for the victims of this pandemic. God bless.
Politics should be a moot point between us all..We have more in common than not .Its male menopause for life for me.. my wife joined me a couple years ago . But we think that she’s exiting it soon .. there is no sugar coating APC . It’s intent is to eat us alive. Let’s stave it off for as long as possible . Be well in this time of covid . I think he’s doing well. Rejoice in love . Nothing else matter.. Thank you .🙏 God Bless
Congratulations on the great PSA response so far. The ultrasensitive PSA (uPSA) tests you've seen here are for a different purpose. The only valid purpose for uPSA (anything less than 0.1) is to monitor recurrence after prostatectomy. In other words, PSAs below 0.1 make absolutely no difference to any conceivable treatment decisions you can make, and are sure to cause anxiety.
Thanks, Allen. I don’t doubt that ultra sensitive testing is even more anxiety provoking than regular testing, but from a purely selfish standpoint I’d like to have some idea how close to the edge the test results are and if things are getting worse (albeit presumably slowly) over time. Maybe that’s unrealistic.
A different but related question...husband’s MO (different hospital from RO but fully looped in) had recommended Zytiga or chemo before husband decided to have radiation. For a variety of reasons, we’d prefer Zytiga. In any case, do you think that we should pursue further treatment once radiation is complete (e.g., Zytiga), or wait until things take a turn for the worse (which, presumably, they will at some point given the nature of stage four PC)?
I think that a uPSA is a very bad idea, but it is your choice. PSA is just a biomarker; it is not the cancer. Larger metastases with blood supplies produce more PSA, microscopic metastases may produce no detectable PSA. In addition, your husband has IDC-P, a cancer type known to put out less PSA. All you have done is "treat PSA" with the oligometastasis-directed therapy. There is still underlying cancer that PSA can tell you nothing about. That is why your focus on looking at every little bit of PSA is misguided and possibly destructive if it interferes with pursuing systemic therapy. You have to treat what you can't see or measure, especially with IDC-P. Zytiga has been found to improve survival in men with mHSPC when used as early as possible. Why would you wait?
Thanks for the feedback, Allen. I figured your recommendation would be to pursue systemic treatment, but I wasn’t sure on the timing. The MO had suggested that we not start Zytiga until radiation was complete (don’t know why). We have no problem beginning once she gives the go ahead.
I think that since the debacle of combining targeted bone radiation (with Xofigo) and Zytiga, it is prudent to be cautious about combining radiation and Zytiga. I haven't seen any evidence that Zytiga improves results of concurrent external beam radiation.
I hadn’t heard of an issue with combining Xofigo with external radiation, but I guess it makes sense since they’re both bone radiation therapies. Xofigo scares me - the side effects sound awful - but I guess it beats the alternative. Thanks again.
First, I misunderstood your previous post; didn’t realize you were talking about Xofigo in combination with Zytiga. Didn’t hear about that either, but good to know. Re Xofigo, I haven’t researched it, but I’ve run across multiple posts in different places that claim that the side effects of Xofigo proved to be intolerable to individual men. Of course, I’ve also read that about ADT, so go figure. In any case, it’s good to know that these claims may be anomalies.
I see dr Mark Scholz in Marina del Rey California at prostate oncology specialists. All three doctors at this office are great and work together. There are a lot of men at the site that go there. Did you do SBRT to the three metastasis? Some preliminary studies are showing that improves survival.
As I understand it, the SBRT and IMRT treatments are all to the prostate and surrounding areas, including lymph nodes. Surprisingly, insurance approved a limited number of Cyberknife treatments, which shortened the overall treatment timeframe. The RO told my husband that they would discuss treating the bone mets after this cycle is done. The RO is concerned about side effects, but since husband has almost none (so far anyway), hopefully he will proceed. However, we may need discuss timing given the virus situation, especially since husband is being treated at a popular hospital in DC. Thanks for asking.
Sorry to butt in - just happened to notice what you wrote: "Some preliminary studies are showing that improves survival." I haven't seen any such studies - do you have a citation? I'd be very excited to see them.
Always happy to have you chime in Tall Allen. Your knowledge in everything PC far exceeds mine. But I’m not a complete idiot. When I read studies like the one on the link below (and there is more than one), I see a “preliminary study showing SBRT improves survival” in ogliometastatic men. It reads:
“Conclusions and Relevance Treatment with SABR for oligometastatic prostate cancer improved outcomes and was enhanced by total consolidation of disease identified by PSMA-targeted positron emission tomography. SABR induced a systemic immune response, and baseline immune phenotype and tumor mutation status may predict the benefit from SABR”.
Now agreed that’s not yet conclusive. But isn’t that a preliminary study showing SBRT may improve outcomes ? Where is my thinking skewed ?
It did not show that such treatment improves survival - how could it? The follow-up was only 6 months.
You made the statement ""Some preliminary studies are showing that improves survival." To my knowledge, and I track this closely, no trial has ever shown that. ORIOLE only showed that PSA was reduced - I call this kind of treatment "treating PSA." Whether or not it delays clinical (radiographic) progression is anyone's guess. What Phuoc Tran showed was that there was a short-term T-cell response. Whether that will eventually lead to a real gain is anyone's guess. Most of the immunotherapies that have been proven useless for PCa (like Prostvac, Yervoy, etc.) generate a similar short-term T-cell response, so there's reason to be skeptical.
The only other randomized trial of oligometastatic-directed therapy for prostate cancer was a small Phase 2 trial called STOMP by Piet Ost in Belgium. It had longer follow-up and he looked to see if it could delay ADT use. Unfortunately, that's a self-fulfilling prophecy: if one defines the need for ADT by PSA, and one "treats PSA" then one automatically delays ADT use. Here's an article about his trial:
There was also a randomized trial across cancer types that came to an erroneous conclusion by making some mathematical and conceptual errors. David Palma agreed with me that he made those errors in our correspondence, but he believes he can correct them in a Phase 3 trial:
Now that we are all familiar with exponential curves (for covid-19 spread) we can easily see where the mistaken impressions come from. Exponential curves (which also describe metastatic proliferation, bacterial growth or spread of infections) have a flat slow-growth part before the curve gets steep. It is likely that it takes years for the first few metastases to grow large enough to be detectable and to "prepare the soil" for future growth. It may take a year for a second met to become detectable and another year for a third met. This is without zapping any of them. It is easy to assume the zapping those early metastases caused the delay, when it would have taken that long anyway because they are on the flat part of the exponential curve. You can see why a randomized comparison of radiographic progression is necessary.
There are several larger randomized trials in the works that use better endpoints, like radiographic progression-free survival. Until we get better data, patients can still treat metastases if safe to do so, but should be aware that there is no evidence pro or con that it delays clinical progression or increases survival. Systemic treatment should not be postponed.
Yea you make pretty good points Tall Allen. Once again you’re guilty of letting facts get in the way of hope. Darn...At least no evidence it does not work ? If you or a loved one had ogliometastatic PC, and assuming the locations were safe to access, would recommend SBRT to those mets on the hope and logic that it might work? That hypothetical assumes that such treatment does not reduce any systemic treatment(s).
LOL. Actually, I do remain hopeful that there is some benefit, and yes, I always recommend zapping oligomets if safe to do so (in spite of the current lack of evidence). The reason I make a point of it is because some patients (and doctors) think they can postpone or eliminate ADT because of it. Systemic treatment should not be postponed - we do have real proof that early systemic treatment improves survival.
Depending upon the location of the mets and the skill and experience of the radiologist, it can be quite safe. Many ongoing studies. Look at this one :
My radiologist did it in his office in three trips. Zero side affects. Both he and the radiologist at UCLA from whom I sought a second opinion think there is an abscopal affect from such treatments. Some studies specifically saw increased immune response.
You could ask for it.Ask also if your husbands cells are diploidal or aneuploidal. Dipoidal is better to have but not terrible if you do. They wont automatically do it. You must ask.Its no big deal.Iwas .005 and diploidal 16 years and counting. Good Luck. Dom
Congrats on your long term success. So many terms... From the little research I’ve done, it appears that most stage 4 Gleason 9 PCs are aneuploidal, and the type of cells at that point won’t impact on treatment.
You dont have any T worth thinking about. Dont know what Eligard is..I took finasteride..I still do. 5mg daily. It suppresses DHT and DHEA. I took 150 mg of Casodex daily for 13 months. I Zoladex shot every month for 18 months.
I don’t know the answer, but congratulations on great results.I'm in treatment new for similar situation, PSA 68, Gleason 9, locally progressed type 3 with one small met to the right hip. After 6 weeks f Lupron and abiraterone with prednisone (and naturopathic, dietary, and exercise regimens) my PSA dropped to 9.98, then 1.24. I can’t wait for my next test! Radiation likely at end of summer. Few side effects, libido drop, mild fatigue, occasional dizziness on rising or vigorous exercise. Bless you, may you dance together for many years.
I’ve been using an ultra sensitive PSA test for about 5 years now, it was recommended by Snuffy Myers. I too am G9, Stage 4. I had to ask my local MO for it and they send my blood samples to Labcorp. Quest does not offer it.
I’ll continue to use it and here’s an example why: I was able to reach undetectable levels <.006 through aggressive treatment. I was undetectable for about 5 years and in consultation with Dr. Sartor my new PCa specialist since Snuffys retirement, I stopped taking Xtandi (which I had been taking for 4+ years) in order to alleviate some of the cumulative SE’s I was experiencing. I was still getting Lupron shots and using Avodart like I have been doing.
After 4 months of no Xtandi my undetectable PSA became detectable again, I had a reading of .008, still extremely low, but it showed without Xtandi my PCa had awoke from dormancy. I rechecked this reading and got the same result so it doesn’t appear to be in error.
I promptly restarted Xtandi and my latest reading is .006, so heading back in the right direction. Hopefully it goes back to a dormant state.
The takeaway is that the ultra sensitive PSA test allowed me to jump on a recurrence quickly, I’ll continue to use it.
You’re getting the normal psa test which measures no lower than <.1. If you got the ultra sensitive test it would go to three decimal places. But knowing that would not change the treatment so it’s not necessary. Plus you might worry unnecessarily about minuscule changes .
My doctorand local labs here use .01 for "undetectable". I am also Gleason 9/Stage 4. Went from .01 at 10 weeks post op...to .05 in Jan...and again in April. I am now told some cancer is present and we are watching closely for doubling rate.
My cancer appeared contained within prostate for pre-op....but post op analysis found microscopic cells in one lymph node (stage 4)...though vesicles were clean (stage 3). Uro pushed for surgery...and it was a rush given Gl 9...and fact the same Uro talked me out of a biopsy 18 months earlier.
Congratulations on a good report. I have had both test. If its .001 or less its undetectable. This is reason to celebrate!
No. It’s of no use to you or your husband. The important numbers are first, PSA of <0.1 as that is considered undetectable. The second number is T or testosterone. Most are thrilled with a <20.0. My guy wanted me at <5.0. After a six month chemotherapy plus hormone therapy trial in 2004, I have been able to maintain a PSA no greater than <0.1 and a 0.0 sometimes. I have been able to maintain T at <5.0.
I realized that starting with a Gleason (4+3) 7 and two Mets is a large difference than with a Gleason 9. However, good job in getting PSA at undetectable and T way down on the scale. I suggest that he chase his radiation with chemotherapy to kill all the little bastards floating around in his vascular and lymphatic system. Please discuss this with your Medical Oncologist. Yes, this guy is next after your Radiation Oncologist. Ask for a referral in that regard.
I am biased and pro chemotherapy with hormone therapy. Many will differ. So, the best question that your husband can ask to his Radiation Oncologist is, “Doc, if you were in my shoes, with a Gleason 9 and metastatic prostate cancer, what would you do? What treatment would be next?”
Gourd Dancer
PS. With a prostate or without a prostate, your husband will always have minute measurement of PSA from other sources not relating to his cancer or his prostate!
Thanks for the feedback. We’re pretty sure for a variety of reasons that we’d prefer Zytiga to chemo as the next step, but husband is meeting with the RO tomorrow and can ask him his opinion. He meets with the MO on Thursday and, hopefully, we can formulate a plan.
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