44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

In reply to @heavyphil, Memorial Sloan Kettering team in NYC and MD Anderson team in Houston, TX both slightly preferred proton radiation for my case. Mayo urology said surgery; Mayo radiation oncologist said photon radiation. Mayo concerned about cancer cells potentially invading the rectum since I have extracapsular extension near the rectum. Photon will pass through the prostate and “hit” the rectum to cover bases there. MSK in NYC and MD Anderson in Houston preferred proton due to pelvic lymph node involvement - I believe they are concerned about limiting bone marrow exposure due to proximity of pelvic lymph nodes to bone. I have asked them to clarify their specific lymph node concern. MD Anderson did present my case at tumor board - radiation with a SLIGHT preference toward proton (if insurance will cover) was recommendation + hormone cocktail previously mentioned. I had the same thought you raised about photon - it would seem more is better to get all the microscopic “floaters, ” right? Two of the three Centers of Excellence I consulted are leaning toward proton. It’s a tough call…I’m trying to learn as much as I can as quickly as I can. They all agreed the hormone cocktail should shrink the tumor some prior to radiation which will help proton precision. The hormone cocktail will also “sensitize” the cancer cells to radiation (making it more effective) so they want me on that for at least a couple months prior to starting therapy. Additional thoughts?

A quick update on my case. Today, besides the PSMA PET Scan appointment in 3 weeks, the urologist also prescribed pre-op physiotherapy, in case i choose to go with the surgery. Anyone else have experienc with physiotherapy?

Agreed..with that kind of Gleason score, the issue is timing and how fast you can secure the best option. German men also have issues with prostate cancer. The machines used in proton radiation therapy, as well as the PET scan system, are primarily manufactured in Germany by Siemens. If you have access to German health insurance and live near Heidelberg, then the best bet is to stay local. The main objective is not to have the cancer spread outside the prostate gland. Also, the TricCare bill for my proton radiation therapy at Loma Linda (10 weeks or 50 treatments) exceeded $125,000 and that was in 2010. No doubt the cost is much more today. Viel Glück!

Good luck...Army beat Navy!

I thought this is a support group not a bullying one ˙◠˙. Just kidding! Thanks for the inputs.

4rs, I just posted a 10 paragraph response to your question and somehow it got lost so I will be brief.
That extra capsular extension close to the rectum should be a big cause of concern. I don’t think there is any MRI or CT scan computer generated algorithm that can shape a beam to be so accurate as to hit the prostate only and not the rectum.
I really believe that surgery is your best option - and this is coming from a guy who considered surgery as his LAST option when I was going through all this.
But I think you have to be pragmatic about your situation. You are very young and you have a higher grade cancer. The statistics would say that it has a good chance of coming back at some point in the future.
With that in mind, I would reserve a second chance to hit it. Surgery first - and then radiation as an option if you need it, is a sound plan. If you have radiation first - even proton radiation - salvage surgery is still extremely difficult.
I completed salvage radiation at Sloan Kettering in Commack about eight months ago. When I asked my radiation oncologist about a gel spacer he said that was not recommended because he wanted to treat any rogue cells that might be lurking near the rectum. You have an obvious mass lurking next to your rectum, and I think a careful dissection in the hands of a skilled robotic surgeon would offer you the best chance of removing the cancer and minimizing damage to your rectum. Surgical pathology will tell the true tale (hopefully!) if your surgical margins are clean; if not, immediate adjuvant radiation therapy would be done in 90 days.
Anyhow, just my personal opinion. I am telling you exactly what I would do if I were in your shoes today, knowing what I know ( and have learned) after 6 years of this freakin crap!
Phil

Heidelberg University Hospital also has proton radiation therapy available, but I would not expect that therapy to be recommended for your specific condition.

I believe that you are on the right track with the medical team that you will pull together and can come from your tumor board members or you may eventually decide to later find another a medical oncologist (Urogenitale Onkologie) that can help guide you through the next step treatment alternatives for your specific condition. A good one in Germany will be connected with the best ones in the US, as they see each other at conferences.

And you can always ask questions in this forum to get the most updated information on treatment alternatives.

You will find that the prostate cancer centers of excellence in Germany are all interdisciplinary and are now comparable to like centers in the US. Many of the doctors know each other in each country.

For example, the PSMA Pet Scan was invented in a collaboration between Heidelberg University Hospital and John’s Hopkins. The refinement of a DaVinci prostatectomy to reduce incontinence risks was developed at Martini Hospital (Hamburg) in collaboration with to hospitals in the US. Etc.

Great news! My PSMA PET CT scan got moved to next week and will be free of charge. Otherwise I would have had to pay around 1600Euro ( about $1860).

That’s great Dinu. Too bad you couldn’t tell us that in last night’s meeting. Hopefully you did get a lot of new information from the meeting.

They were recommending you get a somatic genetic test first and then get the hereditary test once you see the results. The somatic one will have your hereditary information in it so you will get that answer right away even though you do the second test later. The second test will tell you just what you got from your heredity and may have fewer things than the somatic test. Since your cancer was just diagnosed, it’s unlikely that the somatic test will show anything new, but you never know.

Hi Jeff, I have contacted Heidelberg University and they have open a case for me for somatic test. The earliest spot available is in October, unless my urologist states that it is critical for my treatment, in which case they will give me an earlier appointment.