New Oncologist recommendation vs. prostectomy

Posted by Setters and Birds @jonathanack, 2 days ago

Hello All,
Gleason 7 (3-4) in two tumors with cribriform and PNI and Gleason 6 in two tumors. Decipher .72. Age 63.
Condition described as: unfavorable intermediate risk to very high risk clinically localized prostate cancer"

Prostectomy or SBRT?

This week a very disjointed consultation with poor video and audio due to scheduling errors have left me questioning the facility and the referral from that consult to a 'new' oncologist.

My consult was with a surgeon with impeccable credentials and very highly respected. He recommends a prostectomy via DaVinci (he is a surgeon...) and has done in excess of 4K of these. I am very hesitant. I am relatively young and have virtually no meaningful symptoms, am in very good health with no family history, and busy. He referred me to a new oncology colleague with zero reviews (Weil Cornell grad and Sloan resident) for consultation on a SBRT treatment plan.

This is highly recognized group of doctors in a busy New England practice. I am stunned at the error in scheduling (which they fully admitted was on their end) and that my referral is now to newly annointed oncologist with no review history.

Thank you.

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

"Prostectomy or SBRT?"...

Seems to me you maybe left one out...Prostectomy or SBRT or Second Opinion.
I don't do well with disorganized doctors. New England is full of competent practices.

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It is really important that you find out whether or not you have small or large cribriform. My brother had SBRT radiation A couple of years ago and his biopsy specifically says Small cribriform. Five sessions of SBRT and he is fine two years later.

PNI It is so common it almost ridiculous. Here I am 15 years after diagnosis, Had surgery than radiation then drugs for 9 years. Even though I have BRCA2 The PNI recognized in my biopsy, made absolutely no difference. Same is true for almost everyone else PNI is not considered a Recurrence problem.

Since you are young (I had surgery at 62) Radiation may be preferable. You should look into proton radiation, While the chance of having other cancers due to radiation has become much lower Because of the better techniques of radiation, Proton radiation causes the least amount of issues with other organs being radiated.

That decipher score does show there can be problems in the future.

Getting a second opinion may make sense for you. Going to a center of excellence can expose you to many more doctors, which will give you more options.

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Profile picture for jeff Marchi @jeffmarc

It is really important that you find out whether or not you have small or large cribriform. My brother had SBRT radiation A couple of years ago and his biopsy specifically says Small cribriform. Five sessions of SBRT and he is fine two years later.

PNI It is so common it almost ridiculous. Here I am 15 years after diagnosis, Had surgery than radiation then drugs for 9 years. Even though I have BRCA2 The PNI recognized in my biopsy, made absolutely no difference. Same is true for almost everyone else PNI is not considered a Recurrence problem.

Since you are young (I had surgery at 62) Radiation may be preferable. You should look into proton radiation, While the chance of having other cancers due to radiation has become much lower Because of the better techniques of radiation, Proton radiation causes the least amount of issues with other organs being radiated.

That decipher score does show there can be problems in the future.

Getting a second opinion may make sense for you. Going to a center of excellence can expose you to many more doctors, which will give you more options.

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Thank you. Those questions will be on my list (proton radiation size of cribriform). I believe I am at a 'center of excellence' = Tallwood Men's Health - Hartford. Well regarded, but am close enough to many others for a second opinion and treatment. I really appreciate your help, Jeff. Thank you.

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Profile picture for jeff Marchi @jeffmarc

It is really important that you find out whether or not you have small or large cribriform. My brother had SBRT radiation A couple of years ago and his biopsy specifically says Small cribriform. Five sessions of SBRT and he is fine two years later.

PNI It is so common it almost ridiculous. Here I am 15 years after diagnosis, Had surgery than radiation then drugs for 9 years. Even though I have BRCA2 The PNI recognized in my biopsy, made absolutely no difference. Same is true for almost everyone else PNI is not considered a Recurrence problem.

Since you are young (I had surgery at 62) Radiation may be preferable. You should look into proton radiation, While the chance of having other cancers due to radiation has become much lower Because of the better techniques of radiation, Proton radiation causes the least amount of issues with other organs being radiated.

That decipher score does show there can be problems in the future.

Getting a second opinion may make sense for you. Going to a center of excellence can expose you to many more doctors, which will give you more options.

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I believe this is large form from my biopsy report:
Architectural Patterns of Gleason Pattern 4: Cribriform Glands, Poorly Formed
Glands

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Profile picture for Setters and Birds @jonathanack

Thank you. Those questions will be on my list (proton radiation size of cribriform). I believe I am at a 'center of excellence' = Tallwood Men's Health - Hartford. Well regarded, but am close enough to many others for a second opinion and treatment. I really appreciate your help, Jeff. Thank you.

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Although it may be a well regarded institution I don't believe Tallwood is an NCI recognized CCOE. Here's a link to the list: https://www.cancer.gov/research/infrastructure/cancer-centers/find

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Profile picture for Setters and Birds @jonathanack

I believe this is large form from my biopsy report:
Architectural Patterns of Gleason Pattern 4: Cribriform Glands, Poorly Formed
Glands

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Large cribriform can be resilient to radiation in some cases and they are very aggressive. Your Decipher is very high. My husband had similar case and we opted for prostatectomy after consultations with both the surgeon and radiation specialist. Since high decipher and cribriform point to high aggressiveness of the cancer there is a possibility of recurrence and you can irradiate particular region only once. We wanted to have that second option available if there is any BCR in the future.

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Profile picture for surftohealth88 @surftohealth88

Large cribriform can be resilient to radiation in some cases and they are very aggressive. Your Decipher is very high. My husband had similar case and we opted for prostatectomy after consultations with both the surgeon and radiation specialist. Since high decipher and cribriform point to high aggressiveness of the cancer there is a possibility of recurrence and you can irradiate particular region only once. We wanted to have that second option available if there is any BCR in the future.

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Indeed - the decipher is high. How old is your husband when treated and how is he doing (exceptionally well I hope)? That element alone is what prompted the Urologist to lean in the surgery direction (he is a robotic surgeon with over 4k prostectomies). However, a number of gleason 8 and 9 people I know in my age range have opted for radiation in hopes that the treatment works, or works well enough for 10-12 years, to see improvements in RP salvage surgery. It is a dilemma.

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Profile picture for Setters and Birds @jonathanack

Indeed - the decipher is high. How old is your husband when treated and how is he doing (exceptionally well I hope)? That element alone is what prompted the Urologist to lean in the surgery direction (he is a robotic surgeon with over 4k prostectomies). However, a number of gleason 8 and 9 people I know in my age range have opted for radiation in hopes that the treatment works, or works well enough for 10-12 years, to see improvements in RP salvage surgery. It is a dilemma.

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My husband is recovering from surgery as we speak. He had procedure done 3 days ago. If you wish to see detailed information about post op recovery status feel free to look up "Surf Is Up" thread that I posted. He is 69 and otherwise in very good shape. He likes to ski, play tennis and windsurf and kite-surf. He is not retired nor he plans to retire - he really likes working ( he is in high tech). He preferred surgery among other things because it did not involve ADT that can cause tiredness and brain-fog. Since he had cribriform glands radiation without involvement of ADT was not an option. He has 2 stratups and ADT side effects just did not sit well with him. There are so many parameters that go into decision making and with lower aggressiveness one has many more options. Having gleason 9 does not necessarily mean that Dcipher score is high. It can actually be low ! So you have to ask your friends what was their Decipher score and if they had Cribriform or even IDC in pathology report.
Wishing you all the best and please feel free to ask anything.

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Profile picture for surftohealth88 @surftohealth88

My husband is recovering from surgery as we speak. He had procedure done 3 days ago. If you wish to see detailed information about post op recovery status feel free to look up "Surf Is Up" thread that I posted. He is 69 and otherwise in very good shape. He likes to ski, play tennis and windsurf and kite-surf. He is not retired nor he plans to retire - he really likes working ( he is in high tech). He preferred surgery among other things because it did not involve ADT that can cause tiredness and brain-fog. Since he had cribriform glands radiation without involvement of ADT was not an option. He has 2 stratups and ADT side effects just did not sit well with him. There are so many parameters that go into decision making and with lower aggressiveness one has many more options. Having gleason 9 does not necessarily mean that Dcipher score is high. It can actually be low ! So you have to ask your friends what was their Decipher score and if they had Cribriform or even IDC in pathology report.
Wishing you all the best and please feel free to ask anything.

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Thank you. That is what I have been advised as well. A dilemma for anyone facing the decision. Best wishes for a complete recovery.

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Profile picture for Setters and Birds @jonathanack

Thank you. That is what I have been advised as well. A dilemma for anyone facing the decision. Best wishes for a complete recovery.

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Agree with Surfer on all points. Age is a very important factor in prostate cancer treatment - probably the most important.
From my own experience and what I have learned from many on this forum, this disease is never really gone. It may be ‘cured’ for a time or go into remission for years but somehow it’s always there.
So because of this, you ALWAYS must have a Plan B, no matter what kind of reassurances you get from practitioners or what statistical tables you consult; there are always exceptions and outliers.
That said, you are young (good for you!) and your cancer has many years to recur (bad for you!). Your pathology indicates a form of PCa not always responsive to radiation (even brachytherapy plus ‘boost’ seeds) and your Decipher score emphasizes how aggressive your cancer truly is.
Surgery might offer you the best option for a ‘cure’ or long remission. You will be PSA tested probably every 3 months post-op to see if there is any continuous rise in your numbers, so you will be closely monitored, no worries. The hope is that your PSA will be undetectable for many years…
Surgery, unfortunately, produces the most profound side effects (short and long term) even in the hands of the most gifted, experienced surgeon - them’s the breaks, OK? But with a cancer that already has higher odds of returning you have to prioritize saving your life over fears of ED and adult diapers.
I had surgery by one of the best surgeons in the world and my cancer returned 5 yrs later. My pathology was Gleason 4+3 unfavorable but Decipher score hadn’t been invented yet.
Even though the surgery profoundly affected my life at age 64, I have absolutely ZERO regrets that it was my first choice of treatment; I knew the chance of recurrence was real so I planned accordingly. If it comes back a third time I’ll take the next steps, whatever they may be. Best of luck to you in the days to come!
Phil

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