NEWLY DIAGNOSED PC

I would call both MD Anderson and Sartor and email or fax Epstein’s report and I would do all this first thing Monday morning. You are going to need all the firepower you can muster and I would not wait around for local docs to make referrals.

The cases I read were all presented with significant symptoms leading the doctors to discover the cancer. All were very young so they were not first looking for prostate cancer. All used either radiation or surgery to remove the primary cancer. In the surgeries it was reported that the cancer had essentially displaced the prostate. This would explain the very low PSA. It would also indicate that traditional ADT would likely be ineffective at either treating the cancer or reducing the size. All the cases used various cocktails of chemotherapeutic drugs using three or four different drugs, but not the type we usually see for PCa. None reported using ADT. No long term results were reported. The longest was 24 months.

This is a rare cancer seen mostly in children and very young adults. Very rare over the age of 30 or in the prostate. In addition to the urologic oncologists, I would also consider reaching out to institutes that specialize in childhood cancers to find medical oncologists that have experience with PNET. Places like St. Jude in Memphis, Children’s Hospital in Philadelphia, and such.

Papun, I don't have anything else to offer you, except to reiterate what others have been saying: Get your pathology report from Epstein to the consulting doctors wherever they are. It might be wise to consider that you have a rare cancer that is in your abdomen which is not prostate cancer--but it presents that way.

Your's is an unusual case, and the conventional prostate cancer wisdom does not apply to you. I know it's a lot to take in, and a lot to process. I'd keep encouraging you to get yourself to a top cancer center--several have been suggested to you. Take someone with you to take notes and help ask questions.

Part of the challenge is that this is mainly a childhood cancer mostly affecting people between ages 10 and 20 with 15 being the reported median age. It is extremely rare over age 30. Probably the oncologists with experience will be more oriented to children. But that is what research is for.

I think the approach will be for the urological oncologist to collaborate with the childhood cancer oncologist that has dealt with this. Of course MD Anderson would be on the list but I would also investigate childhood cancer centers of excellence and highly regarded prostate specific oncologists that are adept with the tough cases.

With its reported aggressive nature I suggest that time is of the essence.

I’m calling a bunch of people tomorrow including Tulane’s Dr Sartor, Mayo Clinic in Rochester, MN, MSK in New York, etc., But after T Allen’s advice about MD Anderson I did some research and believe they might be my best option. They have a great team of Oncologists, surgeons, urologists, research labs., They even have their own SARCOMA center and all of the top notch technology and tools to deal with many of these weird diseases.
All in all I believe I’ll probably take my chances with a center that has the resources and the network of specialists to come up with a good plan to help me fight this uphill battle!
I will still wait until Wednesday to see Dr Gonzalgo and have all cards on the table!

I’ll definitely keep you posted! Talking to you is giving me all the strength and knowledge I need to face my destiny!
I’ll never be able to thank you enough for all the support! God bless you all!