I have just started this journey, and am deciding on treatments now. 60 years young with a Gleason 5+4 PSA hovering around 7. My PSMA PET showed one lymph near pelvis for sure, and possibly a rib neat top on left side. My medical oncologist ordered a bone scan, which showed nothing on the left side, but a possible spot on the right side. He thinks it is nothing, and puts me at Stage 4A. The Radiation Oncologist disagrees and thinks it is in the bone, so has me at Stage 4B. All agree that surgery is not an option.
They say the treatment isn't much different, and are starting meds with 7 days of Bicalutamide, then a shot of Leuprolide every 6 months along with Abiraterone and Prednisone daily. Radiation IGBT to follow in 3 months.
Does anyone have experience with how the treatments may be different between stage 4A, and 4B?
Does 4A vs 4B matter to the treatment? The Radiation Onc is planning to aggressively treat.
Thoughts, and personal experience shared will be helpful.
Thanks
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Saladman50
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Thoughts based on my personal experiences with four treatments over past nine years. I would have a multi parametric MRI and seek second radiology opinions from centers such as UCLA or Mayo Clinic. Would also consider fluciclovine or Choline PET for comparison. (Optimally I would go to Europe for the Ferrotran nanoparticle MRI).
I would also have a blood biopsy test - recently I had GUARDANT360 CDx (others are available).
As I am post RP, salvage RT, salvage pelvic lymph node surgery, and a year on bicalutamide for added insurance, I would seriously consider RP to immediately remove the primary tumor burden. But then, nine years into this my focus remains, if it comes to it, to defer long-term ADT/chemo and thereby likely CR for as long as possible. Hope this helps. All the best!
Derf, my understanding as well, and a key reason I have gone after tumor burdens, twice, with surgery, and why I remain highly vigilant with bi-monthly usPSA testing, imaging, and blood biopsy testing.
The new marketing name is FERROTRAN - an MRI contrast agent. I traveled to Europe over six years ago for it. This agent originated in US years ago, but that is another story. Another poster recently shared an article about it. Here is a link - you may have to selected translation in URL box. splmed.com/informationen-fu...
"The Radiation Onc is planning to aggressively treat" What does he mean by that? The cancer has spread and radiating the prostate with a very high dose will not cure you. It will just cause side effects you will have to live with in the future.
It matters for prognosis and treatment. Either way, your prognosis is pretty good.
If the cancer has only gotten as far as the pelvic lymph nodes (Stage N1 -- I find the TMN staging more useful than the AJCC Prognostic Stage Groups) it is potentially curable. This is because lymph is a slow-moving fluid and the cancer may still be trapped in the pelvic lymph node drainage area. It is possible that whole-pelvic radiation plus a limited term of intensive hormone therapy can rid the patient of all his cancer.
Once the cancer has found its way to bones (Stage M1b) it has traveled in the bloodstream to get there. That means thousands of metastatic cancer cells are in systemic circulation and have implanted themselves in tissue reservoirs everywhere. What is detectable on a PET or bone scan is just the tip of the iceberg. Even the most sensitive PET scan can't image metastases smaller than about 5 mm. When there are only a few bone metastases detected, it is called "oligometastatic."
Treatment for newly diagnosed oligometastatic M1b has these components:
(1) Triplet therapy- The combination of ADT (e.g., Lupron) + Docetaxel + either abiraterone or darolutamide. ADT is permanent, docetaxel is usually 6 infusions, abi or daro is given until they stop working.
Triplet therapy is so new that there have not been enough deaths among those who are oligometastatic to tell if triplet has a benefit for your subgroup. What we know so far is that triplet works well across all newly-diagnosed metastatic men, and in the subgroup that is polymetastatic.
(2) Debulking the prostate - it has been found that when there are 3 or fewer bone metastases, it extends survival to irradiate the prostate. In your case, they would irradiate the prostate + the entire pelvic lymph node area.
(3) Metastasis-directed therapy (MDT) - a few radiation treatments (called SBRT) of the detectable bone met may slow progression. No one really knows yet. But it is usually safe and easy to do, so why not?
Because that bone met makes such a big difference in your treatment plan, I think it is a good idea to do some more investigation first. If bone lesions shrink after you start on ADT, it is a sure sign that it is cancer. Biopsy of the lesion may miss the cancer if the lesion is too small, but that is something you can discuss with an Interventional Radiologist.
As I share, and am sharing again, after my unsuccessful salvage RT to prostate bed, imaging at 0.11 identified suspicious lymph nodes. At my young age and otherwise excellent health and fitness, instead of pelvic RT and or ADT chemo, I had salvage extended pelvic lymph node surgery. Six cancerous pelvic nodes, including out to left para-aortic, successfully removed. Six years later, usSPA holding very low stable 0.03X range, no ADT. Most recent imaging's and blood biopsies all clear. My objective, if it comes to it, is to defer ADT chemo as long as possible, and thereby onset of CR.
Thanks ManoMRI for your information. I too have pelvic node recurrence after RALP and radiation. Getting proton beam to nodes but going on ADT and Zytiga for 18 months.
Alan, you know none of my investigative nor treatment details. Per your bio, you are not a doctor nor medically trained. Also per your bio, you were cured by first treatment, so, you have not faced mets. All the best!
Yes, I do know your diagnostic details because you write about them. You were N1, not M1, like the OP. It's impoirta nt to understand a poster's diagnosis before you offer advice. You got it wrong. My experience has nothing to do with it.
Back off! A bio on this forum is not diagnostic, and again, you are not a doctor. Also, the poster's diagnosis is not definitive, in fact, it seems he has differing opinions.
You do not have, nor have you ever had, bone metastases. The treatments are different. You replied to me, so it is ridiculous for you to tell me to "back off."If you don't want my comments, why write to me? I have never professed to be a doctor.
No, not ridiculous. You are correct, fortunately to date I have no known bone mets. Again, the posters diagnosis is not clear. We face many disparities fighting this beast, and many medical opinions. I know some very good docs who will go after removing pelvic tumor burdens even with bone mets. Again, many disparities and opinions.
The OP is Gleason 9(5+4) with METS bone Mets, which is totally different than Gleason 7. He should most definitely be getting ADT + 2 years of Abiraterone along with Radiation. He should also get genomic testing done since G5 is prone to HRR mutations, msi-hi and TMB.
Two years after my RP, my ‘totally different’ G 4+3 was confirmed as far as my left para-aortic lymph node; unknowingly, it had to have been on its way prior to my RP. (I note, G 4 cancers are deadly on their own – they don’t need the accompaniment of 5’s).
As I read Saladman50’s post, it is not certain he has bone mets.
I had genomic testing, nine years ago, before my RP. l learned of genomic testing for prostate cancer in England, where it was already in use. My insurance denied coverage as it was not yet approved in US.
The MOs I follow treat G9 (5+4) like G10. That is how different this pathology is from your G7(4+3). You are not even considered high risk so your prognosis was different from the beginning. You need to understand this before offering your experience on treatments. i.e know your audience.
Six confirmed G4 pelvic lymph nodes including common iliac and para-aortic are by no means low risk - untreated they will certainly kill. I am not aware that HU has restrictions on or requirements for sharing experiences. Until just very recently Male Care community guideline #3 was Post from your own experience.
As TA already stated, you were neither 4A or 4B but M0. The OP was asking for experiences from people who were 4A or 4B and it would be a bonus if they were also G9 (5+4) or G10. Again, know your audience, your treatment choices are not helpful and may introduce confusion to the OP since he's only recently diagnosed and just starting his journey. My experience is more closely aligned with the OP is looking for;G9 ( 4+5) clean CT and Bone at dx'd. Had RP 1 of 12 nodes positive. Followed up with IMRT along with 2 years of ADT + Abiraterone Acetate with Prednisone.
Just because you can post something doesn't mean you should. Maybe ask yourself is what I'm posting appropriate and\or helpful.
Prostate cancer in lymph nodes is serious, whether it be G 7 or higher. None other than JHU concluded my G 4+3 was "likely already growing beyond the prostate". They were right as I had six confirmed cancerous pelvic nodes confirmed with the ePLND. Genomic testing is another valuable risk indicator – 7’s can be high risk. I know several men with G9 that had successful RP at MSK. I appreciate I am not in the G 8-10 club but that does not mean not high risk. We all have difficult decisions to make, especially with all the disparities in medical information, diagnostic methods and differing medical advice.
You say that ‘the poster’s diagnosis is not clear’, and that there are ‘many disparities and opinions’ about treatment. But what is clear enough is that you, by your own description, were 4+3 with no mets, and he is 5-+4 with mets.
The poster’s comments make clear both his stage and that he is seeking opinions.
I concur that describing an alternative treatment to a man who is in a completely different stage than you, in rosy terms, is tantamount to advising him to do it.
We tend to be very impressionable when choosing treatment, so ‘sharing your experience’ with what you consider a preferential treatment with a newcomer can sound mighty good to them. It’s also irresponsible, particularly when their pathology is decidedly more adverse than yours.
Especially something like post RP pelvic lymph node dissection, a practice which has largely been discarded by quality doctors for years.
(H)Unlocked: "3: to free from restraints or restrictions" - Webster's
Yes, Saladman50 wrote “Thoughts, and personal experience shared will be helpful”. To say that sharing my experiences and lessons is “tantamount to advising” "a newcomer" is quite a stretch and demeaning of another’s ability to process information and make their own decisions.
Addressing your last comment, “Especially something like post RP pelvic lymph node dissection, a practice which has largely been discarded by quality doctors for years”.
Is the Mayo Clinic not quality? A close friend and cancer brother facing bone mets, also went to Belgium for the ePLND procedure. He is a patient at the Mayo, and they told him his salvage ePLND that removed 31 cancerous pelvic nodes was an excellent decision. They asked him why he did not go to Mayo. Well, neither he nor I knew at the time they offered salvage ePLND with frozen section pathology method.
I certainly consider the surgeon who did my ePLND to be a quality doctor: Prof. Dr. Alex Mottrie, Head of the Urology Department of the OLV Hospital in Aalst and CEO of Orsi Academy, Belgium (easily researched).
Copying from my reply to moonrocket, two years after my RP my ‘totally different’ G 4+3 was confirmed as far as my left para-aortic lymph node; unknowingly, it had to have been on its way prior to my RP. (I note, G 4 cancers are deadly on their own – they don’t need the accompaniment of 5’s).
I think you are calling me a shill, : one who acts as a decoy (as a pitchman or gambler).
Until just very recently MaleCare community guideline #3 was “Post from your own experience”. I willingly share (not pitching) one of my treatment methods, albeit uncommon, hopefully opening up, Unlocking, awareness.
Was I unwise and did I foolishly gamble having robotic salvage extended pelvic lymph node surgery using the frozen section pathology method, following successful imaging at usPSA 0.11, that unfortunately, over six years later, is still not available in the USA? It is clear some members think this.
Thankfully, so far, I am doing very well and enjoying excellent health and physical fitness, gratefully looking forward to my 67 birthday next week, with my usPSA holding very low stable 0.03X, no medications, of any kind, for any ailment.
As I think you may be asking me why, sharing my experiences and lessons.
I appreciate many centers, docs, patients and some HU members feel usPSA testing is unnecessary, needless. I have learned to not give this beast time and obscurity.
Ten years ago, when I was researching all available treatment methods, I came across several published findings that usPSA <0.010 post RP indicates a best outlook for no ‘recurrence”. (My view is it does not come back after RP, but rather, cancer remains). More recently there are published findings that values above 0.03X post RP warrant attention. I agree.
My post RP usPSA nadir was 0.050 and cancer indeed remained. When it rose to 0.11 I had salvage RT to prostate bed - nadir 0.075; again, missed some. Less than a year later, when my usPSA was back up to 0.11 I had the Ferrotran nanoparticle MRI imaging and salvage ePLND I write about.
My post ePLND nadir was <0.011 and it held for twenty-three months. Then the < dropped and slow steady rise began. For past thirty-five months been holding very low stable 0.03X range.
I choose to keep a close watch on this beast and carry on with bi-monthly usPSA testing, annual imaging and blood biopsy testing.
Guys like you fascinate me. I guess this provides a sense of control. I'm not convinced it has any impact on outcome other than thinning one's wallet. But it's a free country and to each their own.
As for impact on outcome, when I was recommended the STAMPEDE Trial back in 2016/2017, at 59YO, for that near term I feared the harsh impacts on my otherwise very healthy and active lifestyle. For the long term I feared the impacts on my very healthy and strong heart, bone and muscular structures.
Today, still consulting with RO and MO, ADT/chemo is not recommended at this time. Yes, it may come and I am very much appreciate learning from groups such as HU, to be informed and prepared.
As for the wallet, I have happily given up the retirement Corvette for my health.
Fear is a terrible thing. Something everyone should strive to overcome. For the overwhelming majority of men who eat well and add a good exercise regiment, the SEs can be reduced. I'm reading you hike, since being diagnosed I've hike to the top of the Schilthorn, to the Matterhorn base camp, The Alta Via 1 from Lago di Brais to Passo Staulanza. This summer I'm hiking in the Pyrenees in early August for 5 days. ADT hasn't been a hindrance. For the second year in a row I'm training for the Mt Washington Bike Ride.
Excellent! I went to Zermatt for my 60th birthday, the Matterhorn was a bucket list of mine since watching climbers at Disneyland in my youth. It was a bit too crowded for my liking, so I simply enjoyed skiing the slopes while gazing upon it. To good training and fun rides!
i’m particularly interested in your statement “ I had salvage extended pelvic lymph node surgery. Six cancerous pelvic nodes, including out to left para-aortic, successfully removed.” i have a cancerous para-aortic lymph node along with several cancerous pelvic lymph nodes and my MO and RO both say removal of the para-aortic lymph node is too risky. It sounds like yours was done without aortic consequence (great!). Can you or others comment on the general advisability of such a procedure? Thanks in advance.
Hello Catskills, I appreciate your interest and friendliness. Regarding general advisability of salvage lymph node surgery, until very recently, Male Care community guideline #3 was “Post from your own experience”. I indeed had this procedure, traveled to Belgium for it, paid out of pocket, so, for me, I certainly thought, and still do, believe it was advisable.
In 2015, prior to my RP, while living in England, I was privileged to have as a neighbor, the late Dr. John Wickham, who is still referred to as a godfather of robotic surgery. I had several discussions with him about my diagnosis and treatment options; discussions as he was retired. (Interestingly, he encouraged me to look into brachytherapy). In his last book, “An Open and Shut Case, The Story of Keyhole or Minimally Invasive Surgery” Dr. Wickham wrote about the prior years of ill-advised open surgery lymph node chasing, including a graphic picture of extensive incision scaring.
In 2017, after my unsuccessful salvage RT, at usPSA of 0.11, the STAMPEDE Trial was recommended to me. Being an otherwise very healthy, fit and active 59, I said no and traveled to Netherlands for the Ferrotran nanoparticle MRI combined with Ga68 PSMA PET (I was not accepted into US imaging trial). Although the Ga68 was clear the nanoMRI Identified five suspicious pelvic lymph nodes. Back in US, the recommendation was still the STAMPEDE Trial.
After many consultations, including top cancer and lymphedema centers, I chose salvage robotic ePLND using the frozen section pathology method. I did have this in Belgium, as I could not find a US center. Recently, I learned this procedure is in practice at the Mayo Clinic. In my case, six pelvic nodes were confirmed cancerous and the resulting usPSA nadir was <0.010. Today, over six years later, my usPSA is holding very low stable 0.03X range. Although I do not think in terms of being cured, I am most grateful I have been able to defer ADT and thereby, the seemingly possible CR stage.
Did I make the right decision? Seems impossible to know for sure, but in this past week, for my upcoming 67 birthday, I have done an epic to me mountain bike ride and epic slot canyon hike in Utah’s San Rafael Swell.
I hope this. Please reach out if you would like additional information. Best, Keith
Keith, thank you so much for your information-filled reply. It’s clear I have some medical homework to do so I can better understand all the procedures you have been through. When I read the entry to which I replied yesterday, I resolved to talk to my oncologist about doing surgery for my lymph nodes. They have described to me a relatively new practice of what they call “spotwelding”, i.e., removing largest cancerous lymph nodes, apparently in the belief that they could be precursors to bigger cancer. Up till recently, they were both telling me that my less than 1 cm suspicious lymph nodes are not precursors to bigger cancer.The field is moving swiftly, it seems, since my diagnosis in 2018. When I read your entry yesterday, it occurred to me that perhaps my pelvic lymph nodes could be removed and during that procedure, they could better determine whether it would be safe to remove the para-aortic lymph node. If not, at least the others would be gone. From your later reply, I now understand that yours was done robotically so it sounds like it would be a matter of doing the nanoMRI that you referred to in order to determine which of the lymph nodes are most probably cancerous. I really appreciate you giving me so much information. I will be using it in discussions with my doctors. It turns out we are virtually the same age— I turned 67 this July. My wife and I just hiked 4 miles of the Nepali Coast Trail on Kauai two days ago. It feels amazing to be able to do something like that 5 1/2 years into this cancer. Hats off to you for your Utah canyon exploits. it must’ve been and felt amazing. Thank you, too, for your offer to further pick your brain. Don’t be surprised if I do. Be well. —Clyde
Clyde, I hiked the Nepali Coast Trail on my honeymoon - so long along. Well done! The ePLND frozen section pathology method I had began with the common iliac. If those were found cancerous, as mine were, then the surgical reach would be extended as far as possible. Six of my thirty one removed nodes were cancerous - including the para-aortic. A fellow warrior friend went to the same surgeon as I did in Belgium. Of his 60+ lymph nodes removed, 31 were cancerous. He is now a patient at the Mayo, and as I mentioned in another comment, they fully support his ePLND and turns out, they actually offer the frozen section procedure. Copying from the link provided - "Mayo Clinic is one of the only medical centers in the nation to use a tissue freezing process for analyzing operating room tissue samples on a routine basis". I did not know this six years ago.
As a fellow Gleason 9, welcome to the club nobody wants to be in. There used to be a thread dedicated to G9s and G10s which was kind of nice but I haven’t seen it in a while? I don’t have much to say other than I was diagnosed in 2015 and have had a pretty great 9 years and looking forward to the next 9. Tall Allen helped me initially and continually; he’s an encyclopedia. I think it’s great that your MO and RO disagree, that’s healthy. Radiation and ADT seem like no-brainers. Exercise is huge too, it helps you heal and fights the ADT boogiemen. Good luck and welcome.
Tall Allen supplied you excellent input.. We are G8/9 and still kicking after ADT and EBRT nearly 7 years ago . We were lucky, as RP was not an option either. Would have given us a far inferior result. Research is key. Sounds to me like you’ve been supplied with some good advice. You’re young. Keep fit and eat a healthy diet. Good outcomes to you.🌺
My husband was diagnosed almost 7 years ago with Gleason 9 and mets to bones. You can read his treatments in my bio. I wish triplet therapy was a thing in 2017- his team did hit it hard with ADT and chemo to start. Then added abiraterone plus prednisone after the 6 rounds of chemo. Tall Allen is a wealth of information and most guys here are great support as well. I always read the bios of those posting info to be sure diagnosis close to my husband's if I'm looking for info for my husband's situation. It makes a big difference in treatment- but every single case seems different as well. 💙
Are you at a center of excellence for prostate cancer? If not, I would definitely get a second opinion at one. I have read that because PSMA scans are new, there is a learning curve. I have also read ribs are notoriously hard to read accurately. UroToday is where we have studied a lot for the physician specialists’ presentations.
Finally, read about MRI guided radiation. It appeared to us to be the safest choice
Tall Allen offered you excellent advice and explanation.
I would ask for a PSMA scan which is the latest technology and pretty much standard of care these days. Bone scan is old school. Gleason 9 is nothing to mess around with, I agree with aggressive treatment. I was diagnosed Gleason 9 stage 4, 10+ years ago, you can read my profile to see what I’ve done.
Stage 4, G10, mets to lymph nodes and to my bones, unfavorable but not too unfavorable ATM mutation. Triplet therapy as per ARASENS protocol (ADT + docetaxel + darolutamide), PSA 70 at diagnosis, 0.07 6 months later.
My thought is my somatic ATM mutation is associated with my G5 pathology. Not sure if you're on the Research to Practice site but I suggest you might find it educational. It's run by Dr. Neil Love and its dedicated to oncology for oncologist. It's where my MO goes for CE and practice updates.
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