1. < Prostate Cancer
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44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

Posted by dinu @dinu, Aug 29 11:17am

I am 44 yr old, Navy Veteran, just got diagnosed with prostate cancer. First rectal exam showed enlarged prostate, followed by PSA180. Biopsy showed 9 out of the 12 samples with cancer cells (most of them Gleason8 or 9). MRT shows no spread. CT with contrast shows no spread. I just got today my bone scintigraphy. Initial results show no spread. Father had prostate cancer last year, therapy, seems to be cured. Mother has breast cancer and stomach cancer (surgery and treatment) now cured.
My big question now: should i go for complete prostate removal or should i go with the various other treatments?
I am currently being seen for this at the University Clinic of Heidelberg in Germany.
Appreciate all the support and stay positive.

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

Profile picture for surftohealth88
surftohealth88 | @surftohealth88 | Sep 22 5:49pm
In reply to @heavyphil "Hey gem1128, Don’t look back and kick yourself for choices you made. You did the right..." + (show)
Profile picture for heavyphil @heavyphil

Hey gem1128, Don’t look back and kick yourself for choices you made. You did the right thing.
If you chose radiation and your cancer extended beyond the capsule, figuring the margins would have been educated guesswork no matter if they used Cyberknife or MRI guided treatment.
If the cancer extended beyond the target area it would have been missed and you’d be right where you are now, but with less options.
If EBRT was used it might have had a better chance, but without ADT, who knows??
Hopefully your radiation team will kill this thing once and for all. And be SURE they plan to radiate the pelvic nodes as well. No matter what the PSMA shows or what your RO ‘thinks’, just be sure they target everything they possibly can. Best,
Phil

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I agree 100%. We found out that gleason score went up to 9 after prostate was out, and not only Cribriform but some necrosis also 😨 - we are praising the Lord that we took it out and did not have "RT for 4+3" which would be sub-optimal since doctors would make a plan for "4+3" case 😰. Also, as far as I learned so far RT after RP is milder and with less side effects - if I am wrong regarding that part, please somebody correct me .

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steveduke | @steveduke | Sep 23 3:12pm
In reply to @loribmt "Popping into the conversation and not intentionally trying to steer this off topic @steveduke. Just wanted..." + (show)
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Popping into the conversation and not intentionally trying to steer this off topic @steveduke. Just wanted to welcome you to Connect and as a fellow AML/BMT survivor (and BMT Mentor for various organizations) let you know we have an active, helpful and hopeful Blood Cancer & Disorders Support group and BMT/SCT, CAR-T Transplant group). Here are a couple of links should you like to share your story with us.

~My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~Snapshots of hope: Life on the other side of transplant https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

I am sorry to hear that you’ve now also been diagnosed prostate cancer. You’ve had quite a rough couple of years, as if AML/BMT wasn’t enough! Wishing you success in your treatments. You’ve found a new family of support here in Connect. Will you join me over in the BMT group?

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I think I've joined. (?) I posted my story there.

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dinu | @dinu | Sep 25 7:49am

Hi everyone,

So one update for my story:
I just opted for the ADT (Trenantone, probably known under a different name in the States) 3 months depot, with monthly PSA tests, and a mpMRI and PSMA PET CT at 3 months.
If the PSA and Testosterone levels drop, it is also expected to reduce the size of the prostate slightly, then i will proceed with RARP, and if needed follow-on RT.
Thank you all who have been so active on this post.

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2 replies
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Sep 25 10:44am
In reply to @dinu "Hi everyone, So one update for my story: I just opted for the ADT (Trenantone, probably..." + (show)
Profile picture for dinu @dinu

Hi everyone,

So one update for my story:
I just opted for the ADT (Trenantone, probably known under a different name in the States) 3 months depot, with monthly PSA tests, and a mpMRI and PSMA PET CT at 3 months.
If the PSA and Testosterone levels drop, it is also expected to reduce the size of the prostate slightly, then i will proceed with RARP, and if needed follow-on RT.
Thank you all who have been so active on this post.

Jump to this post

@dinu
Trenantone Is just Lupron with another name. Did they give you Casodex (Biclutamide) first? You don’t want to take Lupron without taking Casodex or Firmagon first. That can cause a testosterone flare that can make your cancer worse.

You might ask your doctor about this.

REPLY
2 replies
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surftohealth88 | @surftohealth88 | Sep 25 11:15am
In reply to @jeffmarc "@dinu Trenantone Is just Lupron with another name. Did they give you Casodex (Biclutamide) first? You..." + (show)
Profile picture for jeff Marchi @jeffmarc

@dinu
Trenantone Is just Lupron with another name. Did they give you Casodex (Biclutamide) first? You don’t want to take Lupron without taking Casodex or Firmagon first. That can cause a testosterone flare that can make your cancer worse.

You might ask your doctor about this.

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@jeffmarc
Jeff, can you please explain that protocol and if it is always the case, or only when one is preparing for RP it is better to take Casodex first ? What is the difference between Lupron and Casodex / Firmagon ?

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1 reply
Profile picture for surftohealth88
surftohealth88 | @surftohealth88 | Sep 25 11:16am
In reply to @dinu "Hi everyone, So one update for my story: I just opted for the ADT (Trenantone, probably..." + (show)
Profile picture for dinu @dinu

Hi everyone,

So one update for my story:
I just opted for the ADT (Trenantone, probably known under a different name in the States) 3 months depot, with monthly PSA tests, and a mpMRI and PSMA PET CT at 3 months.
If the PSA and Testosterone levels drop, it is also expected to reduce the size of the prostate slightly, then i will proceed with RARP, and if needed follow-on RT.
Thank you all who have been so active on this post.

Jump to this post

@dinu

Dinu - best of luck with your treatment 🍀👍 !!! I am wishing you complete and forever healing from PC ! : )))

REPLY
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Sep 25 12:21pm
In reply to @surftohealth88 "@jeffmarc Jeff, can you please explain that protocol and if it is always the case, or..." + (show)
Profile picture for surftohealth88 @surftohealth88

@jeffmarc
Jeff, can you please explain that protocol and if it is always the case, or only when one is preparing for RP it is better to take Casodex first ? What is the difference between Lupron and Casodex / Firmagon ?

Jump to this post

@surftohealth88

When you first start ADT if you take Lupron, it can cause testosterone flares, which can aggravate your PSA, And your prostate cancer.

If you take Casodex (Biclutamide) For two weeks before taking Lupron the first time that prevents the Flares. Firmagon and Orgovyx Do not have that problem.

Just about any knowledgeable oncologist is aware of this.

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1 reply
Profile picture for surftohealth88
surftohealth88 | @surftohealth88 | Sep 25 12:32pm
In reply to @jeffmarc "@surftohealth88 When you first start ADT if you take Lupron, it can cause testosterone flares, which..." + (show)
Profile picture for jeff Marchi @jeffmarc

@surftohealth88

When you first start ADT if you take Lupron, it can cause testosterone flares, which can aggravate your PSA, And your prostate cancer.

If you take Casodex (Biclutamide) For two weeks before taking Lupron the first time that prevents the Flares. Firmagon and Orgovyx Do not have that problem.

Just about any knowledgeable oncologist is aware of this.

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@jeffmarc
Oh, I'm sure that they are aware, but do they care to go through hustle of combining meds and possibly arguing with insurance in behalf of a patient is another matter and answer is in most cases - no , unfortunately. *sigh

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Profile picture for dinu
dinu | @dinu | Sep 25 1:01pm
In reply to @jeffmarc "@dinu Trenantone Is just Lupron with another name. Did they give you Casodex (Biclutamide) first? You..." + (show)
Profile picture for jeff Marchi @jeffmarc

@dinu
Trenantone Is just Lupron with another name. Did they give you Casodex (Biclutamide) first? You don’t want to take Lupron without taking Casodex or Firmagon first. That can cause a testosterone flare that can make your cancer worse.

You might ask your doctor about this.

Jump to this post

@jeffmarc I have been on Bicalutamide for 30 days now and just got my prescription renewed for another 30 days. My Trenantone shot will be next week.

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1 reply
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Sep 25 2:14pm
In reply to @dinu "@jeffmarc I have been on Bicalutamide for 30 days now and just got my prescription renewed..." + (show)
Profile picture for dinu @dinu

@jeffmarc I have been on Bicalutamide for 30 days now and just got my prescription renewed for another 30 days. My Trenantone shot will be next week.

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@dinu good to hear.

It is no longer necessary to take Biclutamide once you are on Trenantone. The doctor still wants you to continue it?

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