Was diagnosed with stage 4 metastatic prostate cancer with several mets to the bones and a Gleason score of 10. This was in January 2023. I have been on darolutamide and relugolix since then and also 6 rounds of docetaxol.
Everything was good until recently with an increase in PSA from non detectable to .167 and a subsequent PSMA scan showed no bone mets but 2 small areas of cancer, Gleason 10, at the base of my prostate. I was wondering what might be the next recommended treatments? Any ideas would be much appreciated, thanks.
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lovepockets
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I’m certainly no doctor. From what I gather the cancer is at the base of your prostate. Given that your PSA is still very low, they may just want to monitor you. They may wish to radiate those areas.
This is my personal opinion, and it is not medical advice. Currently, there are two small areas of cancer.
I would like to keep all the FDA-approved treatments for the future. As you are 75 years old and also assume that you are healthy, there is no reason to compromise your quality of life.
The biggest task is to find out whether darolutamid and relugolix cannot fight together, so monitor Testosterone levels and maybe find an alternative.
How about participating in clinical trials like ARX517 or other clinical trials?
Have you consulted with a radiation oncologist? It may be a good time to radiate them if both spots are at the same place or close to each other.
Debulking surgery is also an old way to remove the cancer spots using surgery. Everything depends on where it is
Then it would serve no purpose to radiate the observable cancer and could add toxicity with no benefit. Your PSA is still very low. If it gets to about 2.0 or the doubling time gets rapid, consider a change in medicines.
Thanks for your advice. Being a Gleason 10 is a real concern as the first time my PSA went from 1.8 to 14 plus in less than a year. What would be some other medications to replace my existing?
I'm sorry, initially my PSA went from 1.8 to 14 in less than a year. Was diagnosed with Gleason 10 and many bone mets. I started on darolutamid and relugolix and also 6 rounds of docetaxol which I completed in July 2023. In April 2024, my PSA started to rise again from non detectable to .167 which is not high but my most recent biopsy showed two small areas of cancer at the base of my prostate. It was also a Gleason 10. My PSMA scan showed the 2 areas of cancer but thankfully no bone mets.
I'm meeting with my radiation oncologist next Monday but was just wondering if there might be another alternative to radiation. Our main concern is the aggressiveness of the cancer. Hopefully, this clears things up somewhat.
Learning questions - His PSA increased from non detectable to .167 and How did you make the call that hormone therapy is still working? I think he should wait till 2 PSA and then can we say that Hormone therapy is not working?
Before forming an opinion, one learns from those who have studied such issues, and I respect that. Understand that resistance to a medication is a gradual evolutionary process, not a sudden binary response. It starts with one or a few cells that eventually take over. Meanwhile, most cellular activity is still suppressed. There are a limited number of effective medications for prostate cancer. The last thing we want to do is pull the plug on a medication while it is still substantially working. Eventually, all medications will become resistant - that is sadly the inexorable nature of cancer.
The top medical research scientists in the world have investigated this and come up with a set of recommendations, which they have refined it several times. All major clinical trials research is based on their recommendations. It is called the Prostate Cancer Clinical Trials Working Group, and they are up to version 3 (PCWG3):
The date of publication is 2016. I would be suspicious of any recommendations from an article that is so outdated, given the rapid progress in prostate cancer imaging and treatment.
It seems to be a trend in America now that older can't be better. It may surprise you that Gleason grading has been around since 1966 (it has been incrementally updated but not substantially changed), PSA has been widely used for over 30 years, the D'Amico risk stratification system has been used since 1998, the Phoenix definition of biochemical failure after radiation has been used since 2005, and the definition of biochemical failure after RP has been used since 1996.
The reasons that it is not changed frequently are obvious if you give it some thought:
• the old definitions still work
• clinical trials take many years, and our knowledge is cumulative
• making a lot of changes in our definitions will make our previous learnings obsolete
For example, just last year, we got the very useful results of the EMBARK clinical trial. The huge, multi-institutional trial began in 2014 and used the PCWG parameters. It has already changed SOC treatment for recurrent patients.
PCWG is run by a blue-ribbon international panel of prostate oncologists. If they thought any of the parameters required updating, they would change them.
I assume everyone on this forum has been impacted by the diagnosis of prostate cancer (even the women whose husbands/partners have been diagnosed). We are all trying to navigate the healthcare system and plethora of new treatment options as best we can.
The last decade has seen significant advances in both the diagnosis and treatment of this disease. Many medical/radiation oncologists are now treating oligo metastatic disease aggressively (with possible curative intent), whereas in the not too distant past these patients were placed on ADT (without additional treatment of the primary or metastatic lesions) awaiting the inevitable resistant clones and certain death.
SOC treatment sometimes lags more aggressive protocols (especially as utilized by community oncologists, few of whom are speciality dedicated to prostate/GU cancers) used by knowledgeable, experienced MOs/ROs at major COE. Many new new medications, radioligand therapy, use of radiation with curative intent in oligo metastatic disease, new Imaging modalities and various combinations of the above were either not in existence or not widely known/utilized a decade ago.
PCWG published their third (PCWG 3) criteria and recommendations (the publication I believe you cited) in 2016. Since that time the subcommittee working groups convened and updated in 2022 but I am unaware if an actual PCWG 4 has been published. Some of the criteria/recommendations from 2016 are outdated. Example: the specific use of Tc bone scan for follow up of bone metastases. This modality is antiquated and has been replaced by PSMA PET which is more sensitive and specific in detection of prostate metastatic disease.
Yes, PCWG is comprised of prostate cancer experts from around the world. However, these are busy physicians and can only meet periodically; the newest advances may not yet have been incorporated into their recommendations. Some highly knowledgable and experienced MOs at COE ( e.g.- Sartor at Mayo and Pienta at Hopkins) who are specialized specifically to the diagnosis and treatment of prostate cancer, and who are intimately involved in clinical trials, may have more updated information with which to treat their patients. A patrol boat can maneuver faster than a battleship.
Not trying to be argumentative but sometimes there is no definitive answer by just quoting one particular trial/study or PCWG. The disease is too complex and treatment options are changing rapidly.
We are on the same team, but you and I live in different universes. The main difference between your universe and mine is that I believe only science can provide useful answers, and you live in the world of magical thinking.
Medical Science means that we only know what we know through clinical trials. For example, bone scans are still necessary to decide on whether it is beneficial to irradiate the prostate. Far from "outmoded" how would you decide whether to treat the prostate of a newly diagnosed man if you only had a PSMA PET scan and it showed, say, 7 bone metastases? There are no data that show a benefit to prostate debulking unless a bone scan shows 3 or fewer bone metastases.
PCWG will change if the best oncologists in the world think that there is need for a change. So far they have not changed it, and you have zero reason to believe that they would. Your excuse that they don't have time is just plain silly - have you heard of Zoom? Similarly, there is no reason to change biochemical failure definitions, or any of the standard definitions I mentioned above, in spite of your imagination. Your imagination is causing a dangerous pseudoscience. The OP is better served by following the science than by following your imagination.
There is no reason to resort to personal attacks just because someone on this forum has challenged your opinion.
As a matter of fact, I am a man of science. Recently retired, I practiced medicine for more than 40 years and was boarded in General Diagnostic Radiology, Interventional Radiology and Neuroradiology. I performed prostate biopsies in the 90s before the urologists included that in their practice. I have read more bone scans than I care to count, as well as any imaging of the prostate -MRI, PET etc. So I certainly don't need a lecture from you on the pros and cons or cancer Imaging.
What is dangerous on this, or any forum, is laypeople dispensing specific treatment advice to others for the following reasons:
No one on here is (or should be) practicing medicine. Even if someone has an M.D. it would be malpractice to give advice without a formal relationship with the patient, without having their complete H & P, without personally examining them and without having a specialty in urology/oncology.
Despite how well read and intelligent some might be on this forum, they are still not physicians schooled in the science and art of Oncology. There are nuances to practice that can only be obtained by years of actually practicing medicine.
When some receive a diagnosis of cancer, especially metastatic, it is devastating (I know this for a personal fact). In going through the usual stages, it is human nature to grasp at straws and believe what is told, if that information is what they want to hear. The best advice I could give anyone on this forum is to seek multiple opinions from highly competent, knowledgeable, experienced experts at COE. Find an Oncologist that knows your case and that you trust. Follow their advice. If you don't understand or somehow believe it is in error, ask questions. If you don't get satisfactory answers maybe it's time to seek another opinion.
What people shouldn't do is alter their treatment based on a pithy comment provided by a layman with limited knowledge of their case on a public forum.
BTW, your example of the bone scan and the PSMA PET and bone metastasis makes no sense. That is the problem when you just read literature and don't actually understand the Imaging or science. If a PSMA PET showed 7 bone mets, there are 7 bone mets-no matter what the bone scan shows. PSMA PET is much more sensitive and specific for prostate metastases. Bone scan can show uptake of the technetium due to tumor, trauma, infection or arthritis, to name the common causes. It is less sensitive in detection of prostate metastasis (it still has utility for other cancers and other ruses as well). I have seen examples of a bone scan and a PSMA PET taken in the same time frame on the same patient revealing TNTC bone and nodal disease on the PET with the bone scan negative. Most physicians don't order bone scans anymore for prostate cancer if they have the results of a PSMA PET. Why would you? So, you are trying to tell me you would use a less sensitive and less specific test to make a decision of prostate radiation when the more sensitive/specific test has already given you the answer? No.
There was nothing personal in my reply to your pseudoscientific arguments. What makes your arguments dangerous to others is that they sound sciency, but aren't. I'm not calling you an antivaxxer, but the danger is from people who know enough medicine to sound convincing, but throw out the true scientific work of the established science. For a better understanding of what constitutes pseudoscience, read this:
This is a peer forum, and no one practices medicine here, except those who tell patients to self-medicate from off-the-shelf medicines or those that tell patients to defy doctor's orders on dosing.
Your example shows what you don't understand about medical research, and it probably explains why you think you know better than the blue-ribbon PCWG panel. Any kind of scan only shows what is there within the limits of the scan. A PSMA PET/CT scan shows metastases larger than about 5 mm that express PSMA. It does not show everything, only what was detectable by that particular scan. It will probably surprise you to learn that an NaF18 PET/CT is twice as sensitive for detecting bone metastases.
But the discovery that it is beneficial to debulk the prostate with radiation was found only when there were 3 or fewer on a bone scan, not a PET scan. Read this:
In my example of 7 bone mets on a PSMA PET scan, what if all 7 were also found on a bone scan? Then, prostate radiation would only create toxicity with no survival benefit. What if only 2 of those 7 were visible on a bone scan too? Then, if the patient took your advice, he would lose the benefit that he could probably get from prostate radiation. Clinical trials only show what happened empirically for those kinds of patients using those particular techniques. Your supposed "logic" has nothing to do with science - details matter.
Prostate debulking should be based only on 3 or fewer bone metastases on a bone scan. That's what has been proven.
There is no convincing data that metastasis-directed therapy has any benefit. While we wait for data, why not do it if safe? I don't think anyone believes there could be any benefit if there are more than 5 bone metastases. But is that 5 on a bone scan or a PET scan? Some of the newer clinical trials on this subject use PSMA PET/CT, but it will take many years before we see that data. Some of the older trials using a bone scan should mature within the next 3-5 years.
Last reply on this matter. Despite your protestations that your replies aren't personal, they are. "I'm not calling you an anti vexer", which in a backhanded way, you are. Your replies are classic gaslighting and I'm calling it out.
Do you have an M.D. degree? Have you practiced medicine? I do and I did for more than 40 years, some of these at major medical institutions. It is the height of ridiculousness for you to try and explain Imaging tests to me as I interpreted them for more than 40 years. I understand science, trials and peer review. I have published numerous articles in major peer reviewed journals.
The danger on this forum is when individuals make suggestions as to treatment options for people who may be suggestible rather than suggesting they seek the advice of an experienced Oncologist at a COE. I have seen you do this numerous times.
Despite your protestations that you were "not trying to be argumentative," you clearly are, and you are gaslighting by warning others against taking counsel from anyone but you . So let's not be disingenuous.
Clearly, your experience did not protect you from making rookie errors in interpreting medical research. I raised the point about anti-vaxxers because many of them have medical degrees too. You can show your credentials all you want, but that does not provide evidence for your argument. If you had any actual evidence, you would have presented it without attempting personal aggrandisement or trying to put me down. You' ve only proven that your 40 years of experience didn't prevent errors.
BTW- I only report what the research says - that's where my expertise is. If you see me reporting something in error, please let me know. I try to get it right because the stakes are so high, but we are all only human.
lovepockets wrote -- " ... my most recent biopsy showed two small areas of cancer at the base of my prostate. It was also a Gleason 10. My PSMA scan showed the 2 areas of cancer but thankfully no bone mets. ... "
Just a FYI, in 2015 Dr. Gary Onik did Cryoablation on the right half of my Prostate with Gleason 10 and PSA = 14. No chemo and no radiation and no GL10 now 9 years later.
I have been meaning to ask the forum and you this question and now maybe a good time. I remember reading on the forum that PSA doubling should only count at a minimum PSA level. For example going from 0.04 to 0.08 is that a valid doubling time or does the PSA need to be higher to really be considered a valid double for decision making.
Glad you asked! PSA Doubling Time (PSADT) as an indicator of progression has only been found to be valid for PSAs greater than 0.1 and when there are at least 3 measurements taken at least 3 weeks apart. Mathematically, it is computed by fitting the data to an exponential curve. MSKCC has a good fitting program:
While the nadir + 2.0 is the official statement, wouldn't you say that in recent times nadir + 1.0 is considered by oncologist as worrisome? Mine booked me for a CT scan when my PSA was at 0.39 and for a bone scan when it was at 0.9.
I also remember reading in an article that most of the time for BCR, by the time you reach nadir + 2.0 it is pretty much a given that you have one or more metastasis somewhere.
Nadir+2 has not changed. However, it is entirely understandable to start investigating sooner if, for example, the nadir never got low (<0.5), there is no history of prostatitis, the PSADT is rapid, Decipher score is high, Gleason score was 4+3-10 and insufficient ADT or dose was used, there is reason to suspect occult capsular penetration, etc.
My nadir was "undetectable" at < 0.01 so it was low.
I had no history of prostatitis, my Gleason score is 8 (so less than 10).
However my PSADT was rising rapidly as in 2 months intervals between each test (once my T was slightly back) it went from 0.09 to 0.14 to 0.22 to 0.39 and then my MO ordered the CT scan.
That is probably why the doc wanted to investigated sooner, not even waiting for the PSA to be at 1.0. Thanks.
This is a good real world example of the criminally silliness of those advocating in favour of a single decimal PSA reporting. Your first two readings of 0.09 and 0.14, if rounded to a single decimal, would had both been reported as 0.1 leaving you in the dark regarding your rapid PSADT. Then the third reading of 0.2 wouldn't ring any bell as the "rule" calls for 3 accending readings and 0.1, 0.1, 0.2 falls short of it. Only after the fourth reading of 0.4 a red flag would had been raised. Beware of silly docs and their parrots. If asked about the rounding error they would possibly answer it is a sort of (curved) Italian pasta.
Totally nonsense originating from mathematically ignorant people. Even if they had proof of what they are claiming (absence of validation is of course no proof whatsoever), the whole setup makes people that possess basic knowledge of measurements wondering whether this is a collegian level prank. These pankers target laymen who can't understand the vast difference between 0.1, vs 0.10, vs 0.100. The trailing zeros are not there for aesthetics, they specify the precision of the measurement which should always be at least one order of magnitude higher that the cumulative measurement + reporting error. I will stop here because things like the quantisation, also dubbed rounding error, are beyond the understanding of the prankers and their innocent victims.
I’m stage 4 Gleason 9, dx over 10 years ago. When my PSA became detectable again after early heavy treatment, I had a PSMA scan done once it reached 0.2. Thins happened twice over the past couple of years. Each time I treated it with SBRT and each time PSA retreated. It currently is 0.06. Dr. Sartor at Mayo Clinic told me we can continue playing whack a mole as long as the target areas and number of target areas is feasible. You can read my profile to see what I’ve done for treatment over the years.
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