I am a 70 year old diagnosed in 8/21 with G9 on biopsy with initial imaging negative for metastatic disease. Underwent RP in 10/21 with seminal vesicle involvement. A few sampled nodes were negative. 5 months after surgery PSA climbed to 0.39 from 0.016 in first post op test. PSMA PET revealed a solitary T8 met. Sought consultation at a COE. Recommended SBRT to T8. 4 months later my PSA had risen to 4.6. Repeat PSMA PET revealed positive node in pelvis. Sought consultation at Johns Hopkins MO. Recommended aggressive therapy. Had Triplet Therapy with ADT (Lupron), Docetaxel chemo and Darolutamide. After 2nd chemo my PSA was undetectable and has remained so for a year. Full pelvis radiation recommended 8 weeks after chemo which I did.My Hopkins MO discontinued the Lupron after one year; had last 3 month injection in July 2022. My testosterone has not yet rebounded. Hoping PSA stays undetectable and T rises.
Diagnosed almost 3 years ago - Advanced Prostate...
Diagnosed almost 3 years ago
You are a doctor? And hoping your testosterone will rebound? Do you have clinical studies for that?
Because my understanding is that ADT is forever. It's fantastic that you irradiated some of your mets. I think this is called a situation of metastatic prostate cancer. If this is the case this is fantastic.
But we see a lot of people on this forum talking about going on a holiday. And hoping their testosterone recovers so they can return to normal life. As the cliche goes "hope is not a strategy". My view is that a diagnosis of metastatic prostate cancer, sadly, is terminal.
There's no going back to normal life. My understanding is that inevitably the prostate cancer wakes up again. Except now you're on the back foot because of your holiday. Maybe you will be the exception. Maybe someone will explain why I am wrong here. And hopefully in our for shortened lifetimes we will find improved therapies that make terminal metastatic prostate cancer instead a chronic annoyance.
Hi John. ADT is not always forever as it depends on your situation.
When there are no mets or if the mets have not spread further than the lymph nodes of pelvic area, there is what is considered an attempt at a "cure". In which case the treatment is to receive lots of radiation on the prostate and impacted lymph node, along with 18-36 months of ADT. I believe this protocol was created out of the results from either the CHART or the STAMPEDE trials but for more precision on that type of thing, I would point you to Tall Allen who knows this in much more detail than I.
This is the road I was on from Jan 2021 when ADT began to May 2021 when radiation began to May 2023 when ADT ended. I am not "on vacation" from ADT but simply no longer on ADT because my treatment with "curative intent" is over.
So right now I am just in the monitoring phase. If down the road we see that my PSA goes too high, then it will be time to look into another approach. Could be just zapping mets where they appear once they are big enough to be targeted. Or it could mean returning on ADT full-time or intermittently.
All this to say that there is no one-size fits all. Depends on your situation and it also depends on where science is at. ADT is forever for some but not for others. As for Testosterone, it too varies from people to people. For some it comes back in full. For others it does not come back at all. In my case so far it has come back a little but not yet as before ADT. I am told it may take as long to come back as the lenght of time you were on ADT. I was on ADT for about 2.5 years, so I guess I have to be patient. 
Hope this helps!
This is a great report Mascouche. And I have learned from you about a pathway in the world of prostate cancer that I was not really aware of. So I wish you a complete success and forever remission! I'm curious though as to the percentage of the population of people who are diagnosed with metastatic prostate cancer and who fall into your category of "possibly curable". Also I'm curious if your diagnosis puts you in a category that is demonstrably different from people who only have prostate cancer which has not metastasized. My sense is that your situation is not common.
I do not think my situation is so uncommon. If you have not seen too many cases like mine it is most likely because that protocol is only a few years old, just like the studies it came from.
The one thing I can do is talk about how I've lived through that protocol but if you need stats, then not that I cannot hold a candle to Tall Allen in that area so if you need stats on how common this is, he would be your best bet.
Yes, I am a retired physician (Interventional Radiologist but read Imaging -CT, MRI etc as well).
The treatment of oligometastaic disease is rapidly changing. There are those that believe it may become more of a "chronic condition " than a death sentence. To actually kill cancer you have to cut it out, freeze it (cryoablation), heat it (again with a probe, like cryo-), radiate it and maybe US (sound waves). The current thinking is that patients with very limited metastatic disease could potentially be curable by radiating (SBRT) their mets (bone or nodes). Treating the primary tumor with surgery or radiation is necessary to prevent additional seeding. Mets give rise to mets, so by eliminating visible disease you stop or slow the process.
My MO is on the cutting edge and believes in aggressive initial treatment. It has been shown that continuing ADT indefinitely results in eventual development of castration resistant disease in which ADT has limited or no effectiveness. Prolonged ADT has its own risks with increased cardiovascular events, osteoporosis etc.
There are multiple treatment strategies out there. Check out the ARASENS trial. Triple therapy with ADT, Darolutamide (anti androgen receptor drug) and Docetaxel (chemotherapy agent). Promising results.
An excellent and informative reply, Doc! I'm on triplet therapy myself. My concern is that the only way to destroy all the mets is biochemically.
Because you can't find them all at least after a certain point. I am also completely with you where the concern of therapy resistance is concerned. It would be wonderful if metastatic prostate cancer becomes a chronic disease. I'm doing very well right now with a PSA of zero.
But to your point and because of selection pressure it's a high probability that androgen independent cancer is already evolving in my body - Heaven forfend.
And ADT has its side effects especially around fatigue. I would very much like to be on supplemental Estradiol for estrogen add-back - this would reduce some of the risks associated with osteoporosis and cardiovascular disease because of the ADT.
It is unlikely you are cured, because of the T8 met. The cancer could have only gotten there via your bloodstream, so it has to be systemic, even if currently microscopic. If you need a break from ADT, that is legitimate. But I expect it will come back at some point.
Mets to the spine or pelvis can travel through the lymphatic system or the bloodstream. There is a rich system of lymph vessels traveling around the spine to include drainage from the pelvis. Spread to the appendicular skeleton (limbs), ribs and skull is usually an indication of bloodstream dissemination.
Same difference. Once the cancer is outside of the prostate lymphatic drainage area, it is systemic. It can travel along nerves too.
Not trying to put too fine point on it, but there is a difference between lymphatic and bloodstream spread. Spread to the lymph nodes in the pelvis is via the lymphatic drainage. The spread of the prostate cancer in that case may be limited to the pelvic nodes and not disseminated elsewhere. Likewise, if the cancer spreads to the spine by the rich lymphatic drainage surrounding the spine and doesn't travel all the way through the azygous duct to enter the bloodstream, then there is the potential to limit spread confined to portions of the spine. However, if the cancer cells actually enter the bloodstream, all bets are off. They can potentially seed anywhere, provided they survive the rocky journey through the heart, lungs and bloodstream.
Additionally, spread to the spine is oftentimes by the spinal venous plexus. Whether some of the cancer cells bypass the spine and enter the general systemic circulation is anyone's guess. I can envision cases where there is very limited seeding of tumor and early treatment sterilizes those areas before there is widespread disease. Many centers are actually treating based on that premise for metastatic colon, prostate and other cancers.
There is no convincing data MDT to axial metastases is curable. I think it is highly unlikely that bone metastases came from pelvic lymphatic drainage. More importantly, once cancer has conditioned the bone microenvironment to be the "soil" for prostate cancer, it can and will "seed" systemically through the bloodstream. Met-To-met spread is a major source of dissemination.
With a Gleason score of 9, I am surprised your MO agreed for your to stop ADT. Also, with the aggressive disease you sound like you may have, testosterone rising is usually not desirable.
I was dx 12/2014 T3b w G9, no mets. After 2 years ADT was advised to stop it; took vacation for 1.5 yrs till PSA rose and oligometastatic met appeared. Following SBRT in 2018 am back on ADT ever since. Academic now but I do wonder if no vacation would have made a material difference. Now in yr 10 so SoC seems to have produced a reasonable result.
It wasn't really my MO agreeing to stop my ADT, it was his recommendation. He has over 30 years experience treating prostate cancer and has been a very active researcher regarding prostate cancer his entire career. I believe it is important to individualize treatment protocols. Going strictly by SOC means you are somewhat behind the curve in current treatment. Of course, that requires the treatment team to be very up to date on the current literature and be willing to go outside the box.
Still on Darolutimide or not?
Darolutamide was used for 3 months while undergoing Chemotherapy.. Been off for over a year.
Here is my history. Trus biopsy in December 2016 resulted in Gleason 8 score. Bone scan revealed rib lesion in December 2016. ADT began in late January 2017 when PSA reading was 21. SBRT to rib lesion in March 2017. May 23, 2017 had RP when PSA reading was .3. In June 2017 had SBRT to two lesions on my spine. Late August 2017 my PSA was undetectable and has been undetectable each quarter since (next test is scheduled for March 12, 2024). Started Zytiga and Prednisone in second half of September 2017. Had about 39 IMRT sessions as adjuvant therapy to pelvic floor area that ended around November 30, 2017. Following orders received from my MO at MSK my last Lupron injection was a 6-month dose received about December 20, 2018 and my last Zytiga pills were ingested in June 2019. I have not been treated since June 2019. Testosterone has not risen above 97 and the last quarterly reading was 72 on December 12, 2023. Do you see many similarities with your situation?
Wow! You must have some excellent physicians treating you that were on the cutting edge in 2017. Yes, your history is similar to mine. SBRT to known limited mets, RP, systemic therapy for a limited time, pelvic floor radiation and follow PSA/T quarterly.
Your story actually gives me more hope. My RP was in October 2021 so I have been fighting this disease for only a limited time. My MO at Hopkins says we play "whack a mole". If I have a new site of disease pop up, we kill it with SBRT. With the primary tumor removed and limited sites of metastatic disease treated, hopefully there is no additional spread of the cancer. Can there be micrometastases elsewhere that have not declared themselves? Of course. But as long as the PSA stays undetectable or isn't rising there is nothing to do at this time but live life.
Thanks for sharing your story. Good luck in your journey.
"I am a retired physician (Interventional Radiologist but read Imaging -CT, MRI etc as well)."
Perfect for a retired doc:
Heard Dr. X was really concerned that AI was a threat to his career. He now sees that was just a trendy distraction. The true enemy was always the fucking AARP.
Welcome aboard!!!
Good Luck, Good Health and Good Humor.
j-o-h-n
Hi RetiredDoc and Canama,
I hope to follow in your footsteps. And I 2nd the Wow from RetiredDoc.
So did I get this right Canama?
You presented with Stage 4 bone metastatic disease 12/2016, 7.4 years ago.
Geez, your disease did not read the textbook: that you have 2-3 years, get your affairs in order. Moreover, you have not been on any treatment since 6/2019, almost 5 years ago. Profound. I believe Dr. Hong and Fong at UCSF and Dr. Carl Rossi at UCSD might term you cured.
I know. No one believes that on Health Unlocked. But some standard bearers in prostate oncology, not a Dr. Oz or Joe Rogan, actually use the C word.
RetiredDoc and Canama: Please watch the below youtube video to make sure I am not overstating the case, your case Canama.
youtube video on Oligometastatic Cancer, primarily aimed at Prostate Cancer, with Drs. Feng and Hong of UCSF.
youtube.com/watch?v=MOieuFe...
Important note: This video uses the term "Biochemical Recurrence" (BCR) and the word "Cure" in reference to the Stage 4 PCa state of "oligometastasis". This is a new sea change in terminology since the terms BCR and Cure have never been used before in reference to Stage 4 PCa including bone metastatic PC.
The term "Biochemical recurrence" is in an outcome/endpoint graph vs. Time for efficacy of metastasis-directed therapy from the STOMP study. The graph is listed at time 36:56.
Noteworthy at about 4 years out, the BCR-free survival is around 25%, in keeping with Dr. Rossi's estimate of 30% cure with MDT in his hands(Pencil beam, CT cone real time guided Proton RT). Admittedly, this assumes BCR-free survival at 4 years is equivalent to "cure".
But you Canama, have been BCR-free for close to 5 years. Keep us posted. I am praying that you are the prototype of the MDT cure.
Dr. Feng, at 41:50, in reference to a PC patient, who has a single pubic ramus (pelvic) bone metastasis who Dr. Feng treated with Metastasis Directed Therapy (MDT), SBRT(Stereotactic Body Radiotherapy), used the word "cure".
From the above, not only are Drs. Hong and Feng using these terms, but the authors of the Stomp study used the term: Biochemical Recurrence and Dr. Rossi uses the term cure.
And I should not forget Tall Allen. TA let me know where I am getting things wrong.
Thanks for your post. I believe that you are not overstating my case and thanks for the video. If you would like to have a phone conversation to set it up.
Great stuff! Yes, there is a sea change in prognosis of oligo metastatic disease. Because there has been definite treatment using triplet therapy in conjunction with MDT/mainly SBRT for only a relatively limited time, there are not the years of data to yet support cure, but I believe that will be the case. I certainly will take the opinions of experienced, respected physician leaders in the field of prostate cancer over those of laymen on this or any forum, no matter how well read they may be on the topic.
Blood drawn on 3/12/24: PSA was less than .02 i.e. NOD and T was 75 (up from 72 -continuing recent very slow rise).
If you would like to have a phone conversation with me then please use the Chat to set it up.
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