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Sean and I met with Dr. Blanco tonight.  (he is a medical oncologist that has known my dad since they were kids) After looking at my surgical notes from December 10th and the pathology reports from that surgery he told me he was only concerned about the mucin or PMP. He does think the carcinoid is gone (hoping he is correct:) He feels this was caught early, very early.  Our plan right now is that he's going to write a summary of my case and send it to the 130 oncologists in his network.  (to get their opinon on how they would monitor or treat me regarding the pmp. ) He is also going to contact Dr. Sugarbaker in DC.  Dr. Sugarbaker is like the Godfather of appendix cancer, specifically mucin/PMP.  If Dr. Sugarbaker responds, his opinion will hold a lot of weight in what we do.  Sean and I have decided to have Dr. Blanco take over my care at this point. I feel like Moffitt did a great job with the surgery (which Dr. Blanco confirmed was necessary) but I am still not happy with the medical oncologist who stood me up.  I want an oncologist who is on my side and is going to be giving me his/her undivided attention. Dr. Blanco will monitor me with a handful of blood marker tests every 6 months, a 24 hour urine test every year ( I think that's what he said?) and MRIs or CAT scans every 6 months for a few years then once a year after that.  He told me that MRIs are just as sensitive as CAT scans and the radiation from CAT scans isn't good and can actually cause other cancers.
So as it stands, Dr. Neri is reaching out to MD Anderson for me (though I may have to remind her since it took over one week to get my lab results!!) and Dr. Blanco is reaching out to Dr. Sugarbaker, aka The Godfather.  But from what I have learned fromt his entire experience is that I have to take control of my health. There will be no waiting for those consults or appointments. I am in charge of my own health so I will take my referral (for a second opinion) and get in to see one of these PMP Dr.s.  I think it will be Dr. Levine at WFI or Dr. Bartlett in Pittsburg or maybe both!

Two interesting tidbits from my meeting tonight with Dr. Blanco.  He said that even with a fast, aggressive cancer like lung cancer- the cells grow so slowly that someone diagnosed with lung cancer probably had it for 8 years... .just growing from tiny cells into a detectable tumor.  So with my very slow growing cancers, I have had them for a very long time.  (makes my skin crawil) He also said that We (the cancer community) know that carcinogens cause cancer.  The example he gave us was how hot and quickly we cook our food... like searing a steak or ahi tuna.  So the new motto is cook your food LOW and SLOW!