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 michaelcharles @michaelcharles

The book Surviving Prostate Cancer by Patrick Walsh MD and free downloadable Patient Guides by PCF.org are excellent information sources, particularly for the newly diagnosed.

Sincere best wishes.

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thanks michael.

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(I didn’t read through all the comments….). Have you had a PSMA PET scan yet?

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You're young and have a long life ahead of you and don't want to risk this spreading. Suggest you treat it and cut it out now! You'll be able to deal with the side effects. Good luck and best to you.

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Profile picture for jeff Marchi @jeffmarc

You are awfully young to have prostate cancer. I wonder if it’s due to things that are related to the military and The places you have been.

You really need to get a Hereditary genetic test. People who get prostate cancer that young almost always have a genetic issue. I got it at 62 because I have BRCA2. My brother got it at 75 because he doesn’t. My father died from prostate cancer so it makes a chance of my brother and I having it almost double. I had Two aunts get breast cancer. One of them died, and Her daughter died of breast cancer at 60. All must have had BRCA2, But it happens quite a long time ago, so it wasn’t available then. My mother gave me BRCA2.

You have a very high chance of having BRCA2, Because of the breast cancer and prostate cancer in your family.

Have you had a PSMA PET scan? The CT scan is old Technology, The PSMA pet scan is the standard for finding prostate cancer these days. You should tell your doctor that you want a PSMA PET scan before you make a final decision.

Once you have that hereditary genetic test And find out whether or not you have BRCA2, You can make a much more educated decision. If you do have BRCA2, then having a prostatectomy makes a lot more sense, As long as the cancer has not spread beyond the prostate. Something you can’t really find out without that pet scan.

The reason I say a prostatectomy makes more sense is because Of how prostate cancer has reoccurred because I have BRCA2. I had surgery and 3 1/2 years later than the cancer came back. I then had salvage radiation and it was 2 1/2 years later that the cancer came back. I had 2 more reoccurrences but It’s now 15 years since I had surgery, I was a Gleason seven which gives me a better chance of progression free survival. I have been on ADT for nine years and an ARSI for six.

Medicine is moving quickly to help with prostate cancer patients. With proper treatment, you could live decades because of these new developments that keep coming out. Be proactive and get the testing I mentioned done.

I’m sure your doctor will agree that these are the best things you should do before making the decision.

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Very good advice!

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Your so young. I m not qualified to tell u what to do. My results were the same as yours from agent Orange. Gleason 9s. Metastices to pelvic lymph nodes. Get a BRSA2 check before having surgery. Radiation/ ADT shots/ pills worked for me. Over 30 months PSA < .01. No more shots no more ADT pills, I m negative BRSA2 via genetics test. No radiation side effects, just afternoon fatigue daily. Muscle atrophy too so workouts done daily. Take care. Bruce

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Profile picture for dinu @dinu

Hi, no mentions in the biopsy report of cribriform or intraductal.

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That’s good. I hope your cancer is still organ confined. In that case, surgery is probably the best way forward. If it has breached the capsule, and in the abscence of cribriform, you should look also into a triplet radiation therapy (sbrt+brachytherapy boost+adt) if you want to avoid the double whammy of surgery followed by radiation shortly after.

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Universitâtsklinikum Heidelberg (NCT) has PSMA PET Scan testing capability and I also recommend that you get this additional test to confirm no spread of cancer outside of the prostate, because it will be a key factor in your decision for the initial, and it is more precise than other types of scans.

When it comes to the initial treatment, whether you choose surgery or radiation, take the time to choose the best that your insurance will support and others have provided you with those clinics in Germany.

@jeffmarc and others have provided you with the diagnostics.

People in this forum will provide you with more details on what to look for in terms of treatment details (radiation equipment, hormone treatment medications).

In Germany, the “gold standard” for surgery is the Martini Klinik (Hamburg). If your insurance does not enable treatment there, you can find Martini Klinik trained surgeons at other Prostate Cancer center of excellence’s in Germany.

If you choose radiation, I recommend that you get detailed information from this forum on the type of equipment and radiation oncologists, that you can then use when searching for the best radiation treatment centers in Germany and discuss with NCT Heidelberg, as this treatment cycle will take more time than a surgery.

With Gleason 9, getting the best Prostate Cancer Oncology specialist is very important. Ideally that person can help guide you. NCT Heidelberg has at least one.

My opinion is that it is less common to have radiation as the initial treatment in Germany, but that does not mean it is the right decision for you. You can get in Germany the right combination of urologists (surgeon), radiation oncologists, and prostate cancer oncologist specialists. NCT, LMU and others in Germany can provide you with the multi-discipline information that you want for an initial treatment decision and the guidance on this journey.

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If you served in OIF or OEF Prostate cancer is a presumptive condition for veterans exposed to toxic substances, including burn pits, making the connection between their service and diagnosis easier to establish without needing to prove a direct link. You need to file for disability they will rate you at 100%. Also agree request a PMSA PET scan to know for sure if it has spread.

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It is my understanding that if the PSMA PET?CT scan results are available the guidance will be clear as to the path forward. It is my understanding that if surgery is that route then both a Ist generation medications (primary testosterone) androgen deprivation therapy [ADT] is now added by a 2nd generation (cancer cell testosterone
generation). This is in preparation to surgery. But first things first. Jeff please add a comment to mine too.

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I’m also in my forties and was very unexpectedly diagnosed a couple months ago. PSA was 118 with Gleason 9. PSMA-PET scan showed uptake to the seminal lining and pelvic lymph nodes. No bone or distant sites seen on scan, but confirmed regional spread based on PSMA-PET and subsequent MRI. Germline genetic testing also negative for known cancer markers. Started on Bicalutamide and switched to Orgovyx. Trying now to decide on surgery vs radiation. Have gone to 3 “Centers of Excellence” seeking expert opinions on best course of action. One said surgery and two said radiation. However, even the surgeons agreed there would likely be microscopic spread that surgery won’t be able to address ultimately requiring radiation afterwards. I’m leaning strongly toward radiation in conjunction with a sensitizing hormone “cocktail” - likely abiraterone + prednisone along with the Orgovyx I’m currently taking. I’m hoping insurance will cover proton radiation vs photon radiation due to pelvic lymph node involvement. Make sure you consult with an ENTIRE team: urologist (i.e. surgeon); medical oncologist; and radiation oncologist. Surgeons tend to look through a surgery lens and radiation oncologists tend to look through a radiation lens while medical oncologists, in my limited experience, are a bit more in the middle. Meet with the entire team and make sure you go to a Center of Excellence where they are treating a high volume of patients with prostate cancer. I hope your appointment on Monday brings additional insight.

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