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.

If you read the graphs, you will see that NO high risk guy should go the RP route. Radiation has some ability to mop up some PCa that is outside the margins.

Read up!!

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@groundhogy

If you read the graphs, you will see that NO high risk guy should go the RP route. Radiation has some ability to mop up some PCa that is outside the margins.

Read up!!

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I am two and 1/2 weeks into this. I am researching, carefully. Just got the Walsh book yesterday. Give a guy some time!

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@groundhogy

Just wondering, if its already in the fatty tissue outside the prostate, what is the point of RP? Its not like they can take a ton of extra tissue out just to make sure because the prostate is only millimeters away from other important things (not like breast cancer).

I think you need to do some book reading FAST.

Also do not assume that the person guiding you is only motivated purely by your optimal survival. Sorry to say but that is my experience.

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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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@groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are more dangerous than the cancer.

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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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@chipe

I am two and 1/2 weeks into this. I am researching, carefully. Just got the Walsh book yesterday. Give a guy some time!

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TAKE YOUR TIME AND DO NOT FEEL PRESSURED TO MAKE A DECISION ON YOUR TREATMENT. Also remember that other members on this forum are not experts on prostate cancer and may have biases that do not serve your best interest.

I believe that “Groundhogy” means well however I strongly disagree with using the website and graph to influence your treatment plan. I used it the first time around to determine which treatment to choose. I feel that it led me in the wrong direction and as a result I’m dealing with high risk, aggressive, Stage 3 locally metastatic PCa as a result.

The chart and website ignore genomics as a consideration which in my opinion is not in the best interests of men with PCa. Aggressive cancer can kill you. Prostate cancer is a complex disease and treatment is never a “one size fits all” solution.

Here’s my non-medical advice.
1.) Read the book. Make notes of questions to ask.
2.) Seek care at a center of excellence even if you have to travel. https://www.cancer.gov/research/infrastructure/cancer-centers/find
3.) MAKE CERTAIN THAT YOUR CASE HAS BEEN REVIEWED BY A TUMOR BOARD where doctors with different disciplines have weighed in regarding what is the best treatment modality for YOUR case.
4.) Ask what “Plan B” is if Plan A fails. Make certain that you’re comfortable with that answer.
5.) Don’t hesitate to get a second opinion.
6.) Consider getting genomic testing and a Decipher score. Understand how aggressive of cancer you’re dealing with.

Good luck and keep us informed.

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@robertmizek

Hi and welcome to the brotherhood that no one wants to be a member of. This is a wonderful forum that Mayor Clinic hosts. I am a fellow stage 3 Gleason 9 prostate cancer patient so I’m only sharing my personal experience and not giving medical advice.

As fellow Forum member northoftheborder stated you need to make certain that you are being treated at a center of excellence with a great track record of helping men with prostate cancer. Local community hospitals do their best but seldom have the resources as places like Mayo, MD Anderson, Northwestern Medicine and others. Here is a link to nationally recognized centers of excellence: https://www.cancer.gov/research/infrastructure/cancer-centers/find

A PET scan is a great idea as long as it is the more advanced PET-PSMA scan. That scan is most helpful for recognizing metastasis which is spread beyond the prostate itself.

Good luck on your journey. Please don’t hesitate to keep keep us informed as to your status. We’re interested in you and here you.

I strongly recommend you purchase the book surviving prostate cancer by Dr, Patrick Walsh and Dr. Edward Schaffer. It reflects state of the Art cancer care here in 2024. I own a copy and it’s given me great confidence in the care that I have received and will receive. https://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer/dp/1455504181 Personally, I think it’s the best $10 you’ll ever spend on understanding your disease.

According to Dr. Edward Schaffer, who is the head of urology at Northwestern medicine in Chicago, state of the treatment in 2024 for stage three prostate cancer patients is radical prostatectomy to debulk the cancer, radiation where appropriate such as the prostate basin and prostate lymph nodes and then up to two years of first and second generation ADT. Removing the prostate reduces the size of the battle that has to be fought with radiation and androgen deprivation therapy. This is well discussed in the book along with summaries of the research that has been done to determine the effectiveness of this protocol. I am a patient at Northwestern Medicine and this is the protocol that is being used for my case. Removing my prostate, which had extensive cancer along with extra capular extension and paraneural involvement on one side along with removing each of the locally available lymph nodes reduced the battle to the area around a single difficult to reach lymph node.

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Dr. Schaffer and his team of doctors at Northwestern University are probably the best in the country in terms of urology and prostate cancer. I don't live close enough to be a patient there, so I searched for a urologist in my State who received his MD from Northwestern. There was one, and he was taking new patients so I asked my primary care doctor for a referral to his practice.

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@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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Spot on analysis! Caveat emptor on this one!

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Another interesting anomaly? 4 years ago my PSA was a 4. My doc put me on finasteride and it went down to a 1. It stayed at 1 until this past February when it went up to 2. My PSA has never been higher than 4. I'm trying to find what that means in Dr. Walsh's book, but haven't found it so far. Still looking!

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@chipe

Another interesting anomaly? 4 years ago my PSA was a 4. My doc put me on finasteride and it went down to a 1. It stayed at 1 until this past February when it went up to 2. My PSA has never been higher than 4. I'm trying to find what that means in Dr. Walsh's book, but haven't found it so far. Still looking!

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From my understanding it means "no _radiographic_ progression" in the book: the PSA is rising, but there's no detectable metastasis. He discusses that a bit in the last chapter.

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@chipe

I am two and 1/2 weeks into this. I am researching, carefully. Just got the Walsh book yesterday. Give a guy some time!

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Lol
Maybe one by Scholz too.
The more the better

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