Stage 3a, Group 9, just discovered. Dr. gave options but have question

Posted by chipe @chipe, Aug 8 9:45am

So, I went from happily living a "normal" life, being on finasteride and tamsulosin to having Stage 3a, Group 5, Gleason 6, 8, and 9 in a year. Yikes. Already in fatty tissue outside of the prostate, so he scheduled me for a PET scan on the 19th. He was kind of down when talking to my wife and me and said "you have years, not months" etc.
He laid out two plans for me: 1. if not metastasized have RP and radiation, maybe chemo. If metastisized get hormone therapy, radiation, and chemo.

So, my question is: even if it has metastasized, why would they not remove the prostate to get rid of the "source?"
Thanks!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@northoftheborder

Thanks for sharing that.

I work with a different kind of data for a living, but still, I'll suggest using sites like that *very* carefully.

When you combine data from different sources and then try to extrapolate a new conclusion that wasn't the goal of the original studies, even a tiny error or wrong assumption can explode into seriously-wrong conclusions.

That happens even with full academic rigor like ethics boards and peer review, which is why you never trust the results of single study. When it's just a website that's convinced a single radiation oncologist to sit on its board and it's letting you generate arbitrary comparisons based on multiple independent variables, it might still be interesting, but I suggest swallowing it with a fistful of salt.

There's a very good reason that major research institutions like Mayo or the Cleveland Clinic don't offer this kind of thing.

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Also commenting strongly on info you haven’t looked into can be misleading.

There are a number of newer research papers that are not included in the graphs that you can pull and read as i did. They show the same trends as these graphs. You should look for them.

The graphs were originally created by Dr. Grimm because he was exasperated. The industry leaders could easily commission studies to create this data but they have not and will not.
Grimm has passed on and a foundation comprised of like 50 docs from around the world keep that website running and reviewed. Its all there on the website. Read.

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@northoftheborder

My layperson's understanding is when there's only local spread, they sometimes do "salvage radiation" (lower dose?) after a prostatectomy — the surgery removes the bulk of the cancer, then the radiation (hopefully) mops up the rest.

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I don’t believe salvage radiation is as curative as primary.
Also didn’t the OP say he was very high gleason? That combined with some detected spread would be reason to not go RP.
You should READ all about RP and micro-mets and margins.

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@groundhogy

I don’t believe salvage radiation is as curative as primary.
Also didn’t the OP say he was very high gleason? That combined with some detected spread would be reason to not go RP.
You should READ all about RP and micro-mets and margins.

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When I share information here, I usually add that I'm a layperson (in case it's not obvious), and sometimes also that YMMV (your mileage may vary).

Since cancer has become such a big deal in our lives and we're reading about it a lot, we're all at risk of the Dunning-Kruger effect: people who know only a little about a field talk with much more confidence than the qualified experts (you'll see that all the time on YouTube and cable news, for example). Amateurs talk about "facts"; experts talk about possibilities, probabilities, and uncertainty, which is more honest, but not nearly as comforting. 🙁

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@groundhogy

Also commenting strongly on info you haven’t looked into can be misleading.

There are a number of newer research papers that are not included in the graphs that you can pull and read as i did. They show the same trends as these graphs. You should look for them.

The graphs were originally created by Dr. Grimm because he was exasperated. The industry leaders could easily commission studies to create this data but they have not and will not.
Grimm has passed on and a foundation comprised of like 50 docs from around the world keep that website running and reviewed. Its all there on the website. Read.

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Respectfully, you seem to have a bias against RP with a bias towards RT based on non-peer reviewed published data. I used to have the same bias. I read the same papers, visited the same website, and reviewed the same charts. I also watch countless videos from Dr. Mark Sholz who is a highly regarded Radiation Oncologist. I also called the PCRI hotline for information before I selected radiation (brachytherapy) as my primary therapy in 2020. I was assured that I’d never have to worry about PCa again and that if it reoccurred I’d just receive more brachytherapy seeds and it would never be life threatening. And guess what? It failed. Miserably. I was diagnosed with aggressive Stage 3a N1 PCa with a Gleason score of 9 and a 50% chance of surviving 5 years. More seeds weren’t an option. IMRT was nearly guaranteed to create a stricture and the need for a urinary diversion for the rest of my shortened life. Luckily, I found a surgeon skilled in salvage RP after brachytherapy who removed the prostate and every lymph node that he could safely reach. I’ve now also received 31 sessions of salvage radiation to the pelvic lymph node basin and am on first and second generation ADT for 24 months. They given me hope of a cure and a life expectancy over 5 years.

5 different doctors including 3 radiologist-oncologists reviwed my case and commented that brachytherapy alone was inadequate primary treatment. I should have received a combination of brachytherapy with EBRT and 6 mos of ADT OR surgery with the possible addition of RT to the prostate bed and 6 mos of ADT.

What’s my point? I no longer project a bias toward any particular treatment as every case may have nuances that don’t fit my bias. Prostate cancer is a complicated disease and while you and I might be brilliant in non-medical pursuits we don’t have the knowledge or education to be recommending treatment to other men. We can share our experiences with PCa and the treatment we received but shouldn’t project our bias’ to other forum members. I used to speak publicly at the local prostate cancer foundation about the curative benefits of brachytherapy for low and intermediate risk PCa. I was the local “poster boy” for positive outcomes for almost 3 years. The local doctor who practiced brachytherapy benefited from new patients that sought care with him after they heard his pitch and my testimony at the meetings. My heart was in the right place but I hope none of them had the same poor results I had.

Good luck on your journey and wish me good luck on mine.

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@robertmizek

Respectfully, you seem to have a bias against RP with a bias towards RT based on non-peer reviewed published data. I used to have the same bias. I read the same papers, visited the same website, and reviewed the same charts. I also watch countless videos from Dr. Mark Sholz who is a highly regarded Radiation Oncologist. I also called the PCRI hotline for information before I selected radiation (brachytherapy) as my primary therapy in 2020. I was assured that I’d never have to worry about PCa again and that if it reoccurred I’d just receive more brachytherapy seeds and it would never be life threatening. And guess what? It failed. Miserably. I was diagnosed with aggressive Stage 3a N1 PCa with a Gleason score of 9 and a 50% chance of surviving 5 years. More seeds weren’t an option. IMRT was nearly guaranteed to create a stricture and the need for a urinary diversion for the rest of my shortened life. Luckily, I found a surgeon skilled in salvage RP after brachytherapy who removed the prostate and every lymph node that he could safely reach. I’ve now also received 31 sessions of salvage radiation to the pelvic lymph node basin and am on first and second generation ADT for 24 months. They given me hope of a cure and a life expectancy over 5 years.

5 different doctors including 3 radiologist-oncologists reviwed my case and commented that brachytherapy alone was inadequate primary treatment. I should have received a combination of brachytherapy with EBRT and 6 mos of ADT OR surgery with the possible addition of RT to the prostate bed and 6 mos of ADT.

What’s my point? I no longer project a bias toward any particular treatment as every case may have nuances that don’t fit my bias. Prostate cancer is a complicated disease and while you and I might be brilliant in non-medical pursuits we don’t have the knowledge or education to be recommending treatment to other men. We can share our experiences with PCa and the treatment we received but shouldn’t project our bias’ to other forum members. I used to speak publicly at the local prostate cancer foundation about the curative benefits of brachytherapy for low and intermediate risk PCa. I was the local “poster boy” for positive outcomes for almost 3 years. The local doctor who practiced brachytherapy benefited from new patients that sought care with him after they heard his pitch and my testimony at the meetings. My heart was in the right place but I hope none of them had the same poor results I had.

Good luck on your journey and wish me good luck on mine.

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Thanks for sharing that, and I'm so sorry. The key point I'm picking up from everywhere is that our cancers are coach-built, not mass-produced

They have enough in common that large groups of them respond to the same treatments (fortunately for us), but every prostate cancer is a little different, which is why each of us needs a multidisplinary team (ideally) to look at it from many different angles and help us choose the best treatment strategy. There's no pre-canned solution that's best for everyone.

In my case, debulking surgery (metastasis), external radiation (primary and metastasis), ADT, and ARSI have served me well; in your case, radiation-first was the wrong approach.

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@robertmizek

Respectfully, you seem to have a bias against RP with a bias towards RT based on non-peer reviewed published data. I used to have the same bias. I read the same papers, visited the same website, and reviewed the same charts. I also watch countless videos from Dr. Mark Sholz who is a highly regarded Radiation Oncologist. I also called the PCRI hotline for information before I selected radiation (brachytherapy) as my primary therapy in 2020. I was assured that I’d never have to worry about PCa again and that if it reoccurred I’d just receive more brachytherapy seeds and it would never be life threatening. And guess what? It failed. Miserably. I was diagnosed with aggressive Stage 3a N1 PCa with a Gleason score of 9 and a 50% chance of surviving 5 years. More seeds weren’t an option. IMRT was nearly guaranteed to create a stricture and the need for a urinary diversion for the rest of my shortened life. Luckily, I found a surgeon skilled in salvage RP after brachytherapy who removed the prostate and every lymph node that he could safely reach. I’ve now also received 31 sessions of salvage radiation to the pelvic lymph node basin and am on first and second generation ADT for 24 months. They given me hope of a cure and a life expectancy over 5 years.

5 different doctors including 3 radiologist-oncologists reviwed my case and commented that brachytherapy alone was inadequate primary treatment. I should have received a combination of brachytherapy with EBRT and 6 mos of ADT OR surgery with the possible addition of RT to the prostate bed and 6 mos of ADT.

What’s my point? I no longer project a bias toward any particular treatment as every case may have nuances that don’t fit my bias. Prostate cancer is a complicated disease and while you and I might be brilliant in non-medical pursuits we don’t have the knowledge or education to be recommending treatment to other men. We can share our experiences with PCa and the treatment we received but shouldn’t project our bias’ to other forum members. I used to speak publicly at the local prostate cancer foundation about the curative benefits of brachytherapy for low and intermediate risk PCa. I was the local “poster boy” for positive outcomes for almost 3 years. The local doctor who practiced brachytherapy benefited from new patients that sought care with him after they heard his pitch and my testimony at the meetings. My heart was in the right place but I hope none of them had the same poor results I had.

Good luck on your journey and wish me good luck on mine.

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We must use some information.
The common line from the establishment is that the probability of cure for radiation and radical prostatectomy are exactly identical. This doesn’t seem even faintly plausible to me.
You have to go off of some data, or else you are just blind and you don’t know where you are going.
Each person here must gather information the best he can in this situation and make a line straight for where he thinks safety is. And the waters are very muddy here. Its hard to see. But you have to use something. And the industry has not been very good at providing the information in those charts or providing alternate guiding info.

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I met with the surgeon yesterday. What a nice guy, probably the same age as my son. LOL. His explanation of treatment options, stages, T scores, Gleason scores, and side effects was understandable and thorough. He put my wife and me at ease and were very comfortable.
He used charts and treatment progressions from NCCN.org which were clear and concise.
I think I am going to go with a "triple antibiotic" type of treatment (as long as the PET scan next Monday allows it).
1. Radical Prostatectomy
2. ADT
3. Radiation to "clean up any remaining bits".
I have been reading Walsh's book and Scholz's book, looking up online and it is a little muddy about this approach. However, NCCN says that ADT and Radiation *usually* are as effective as RP and radiation. However, when you add in RP, radiation, and ADT, it's a whole different ballgame and not enough studies are out there on that treatment.
Now I await the PET scan and talk again with my urologist, surgeon, and the soon-to-be-added oncologist about that scan, and we go from there.

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@chipe

I met with the surgeon yesterday. What a nice guy, probably the same age as my son. LOL. His explanation of treatment options, stages, T scores, Gleason scores, and side effects was understandable and thorough. He put my wife and me at ease and were very comfortable.
He used charts and treatment progressions from NCCN.org which were clear and concise.
I think I am going to go with a "triple antibiotic" type of treatment (as long as the PET scan next Monday allows it).
1. Radical Prostatectomy
2. ADT
3. Radiation to "clean up any remaining bits".
I have been reading Walsh's book and Scholz's book, looking up online and it is a little muddy about this approach. However, NCCN says that ADT and Radiation *usually* are as effective as RP and radiation. However, when you add in RP, radiation, and ADT, it's a whole different ballgame and not enough studies are out there on that treatment.
Now I await the PET scan and talk again with my urologist, surgeon, and the soon-to-be-added oncologist about that scan, and we go from there.

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First of all thanks for sharing your update. Decisions like this are tough to make. I wish you and your wife the best for your journey together. My wife is my single biggest advocate and I’m glad that you don’t have to face this alone.

I’ve had the triple treatment and am doing well. I hope you have the same experience. I won’t give medical advice but I’d like to share what I learned along the way:

Surgery was less scary than I expected. I was up and walking around the same day. I came home the next day. I was terrified about having a catheter. It was a bit uncomfortable and certainly inconvenient but it served its purpose allowing the anastomosis to heal. I felt like more like my old self in 6 weeks.

My oncologist wanted to put me on Lupron. I heard enough positive anecdotal stories about Orgovyx having less side effects such as depression, extreme fatigue, and hot flashes that I asked for it and my side effect experience has been better than my friends and acquaintances that had Lupron. I applied for financial aid and qualified so cost was/is not a barrier to its use. I’m also on generic Zytiga otherwise known as abiraterone Acetate. I buy it from Mark Cuban’s Cost Plus pharmacy rather than Walgreens or CVS. That reduced the cost to about $128 per month from over $500.

Salvage radiation went fine. I had to show up with a full bladder and an empty rectum and once I figured that out it was largely a non-issue. At the direction of my RO I went on a low fiber diet and stayed on it during all 7 weeks. Inexperienced mild diarrhea each day after the second week but a small dose of Imodium made that quite manageable. I experience some serious fatigue after the 4th week and rested when needed. The fatigue passed 3 weeks after radiation ended.

I believe that you’re going to handle treatment well. We’re here to listen and answer questions as best we can.

Again, good luck on your journey!

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@robertmizek

First of all thanks for sharing your update. Decisions like this are tough to make. I wish you and your wife the best for your journey together. My wife is my single biggest advocate and I’m glad that you don’t have to face this alone.

I’ve had the triple treatment and am doing well. I hope you have the same experience. I won’t give medical advice but I’d like to share what I learned along the way:

Surgery was less scary than I expected. I was up and walking around the same day. I came home the next day. I was terrified about having a catheter. It was a bit uncomfortable and certainly inconvenient but it served its purpose allowing the anastomosis to heal. I felt like more like my old self in 6 weeks.

My oncologist wanted to put me on Lupron. I heard enough positive anecdotal stories about Orgovyx having less side effects such as depression, extreme fatigue, and hot flashes that I asked for it and my side effect experience has been better than my friends and acquaintances that had Lupron. I applied for financial aid and qualified so cost was/is not a barrier to its use. I’m also on generic Zytiga otherwise known as abiraterone Acetate. I buy it from Mark Cuban’s Cost Plus pharmacy rather than Walgreens or CVS. That reduced the cost to about $128 per month from over $500.

Salvage radiation went fine. I had to show up with a full bladder and an empty rectum and once I figured that out it was largely a non-issue. At the direction of my RO I went on a low fiber diet and stayed on it during all 7 weeks. Inexperienced mild diarrhea each day after the second week but a small dose of Imodium made that quite manageable. I experience some serious fatigue after the 4th week and rested when needed. The fatigue passed 3 weeks after radiation ended.

I believe that you’re going to handle treatment well. We’re here to listen and answer questions as best we can.

Again, good luck on your journey!

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Thank you for this. The doc also mentioned Orgovyx as the treatment.
Again, thank you.

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@groundhogy

We must use some information.
The common line from the establishment is that the probability of cure for radiation and radical prostatectomy are exactly identical. This doesn’t seem even faintly plausible to me.
You have to go off of some data, or else you are just blind and you don’t know where you are going.
Each person here must gather information the best he can in this situation and make a line straight for where he thinks safety is. And the waters are very muddy here. Its hard to see. But you have to use something. And the industry has not been very good at providing the information in those charts or providing alternate guiding info.

Jump to this post

I think the prostate-cancer research and treatment community (not "industry") is reluctant to produce charts like that because they can create a false sense of certainty beyond what the data really supports.

By all means, I agree with you, look the data — I've been doing that almost continually since I was diagnosed in 2021 — but don't try to make decisions based on it by yourself, because it's full of hidden caveats and gotchas.

As I mentioned before, the best way to use any cancer data (from individual studies, meta-studies, or even informal aggregations like the one you shared) is as a way to formulate questions for your care team, not a place to find answers.

And thanks again for sharing the link. As a data guy, I find the visualisation styles interesting.

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