jamom74
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Sorry for the confusion. In 2015 and prior my father only had benefits through the VA as he was 100%service connected disability. We paid out of pocket at the end of 2015 to go to MSKCC. He has now in 2016 Medicare and supplemental so very good insurance in addition to the VA.
We found a doctor at Robert Wood Johnson that we will go to so he can answer all our questions I hope a new set of eyes will help us.
Thank you so much for your support I pray for all families going through this.Thank you so much for your support – We went to MSKCC and they will not let us see the medical oncologist we want to see as back in Oct we went for a consult in their Basking Ridge Office and she did nothing but tell my father he needs a miracle so we stayed with the VA and then waited on insurance. We went to a wonderful surgeon that looked at the new ct scan and said it looked like ICC but when I told him about the same situation 5 years ago with enlarged Spleen and 6 hypodense lesions and enlarged lymphnodes and questioned lymphoma he said ask the medical oncologist – I asked to make an appointment with Dr. Maeve Lowery but was told that once we see an oncologist we are stuck with that oncologist and there is nothing I can do about it. So now back to getting new appointments and new doctors.
Help any good recommendations in NJ? or NY?We are baffled with my father’s diagnosis of Stage 4A CCA as we are dealing with a US Veterans hospital. My father is 68 years old with 40 years of Crohn’s Disease. Our journey started out in June when he spit up a little trace of blood as he was a former smoker he was concerned. His doctor did a chest ultrasound and saw a 3 cm tumor. They did a biopsy and he received a call from his primary that it was not cancer but then a few days later he gets a call from an admin to set up a pet scan and when he asked why they said because you have lung cancer. He was shocked. The petscan showed something in the liver so they performed a liver biopsy and he received a call to tell him it is not cancer. When he goes in for a checkup a week later they tell him they want to do another biopsy with smaller needle and when they go in deeper he gets the news it is cancer. They said lymphnodes next to tumor is involved but they never biopsied it. My father is feeling well no symptoms and liver levels are normal. They told him that surgery is not an option as he has cirrhosis and portal hypertension that was never confirmed or properly diagnosed. They have no experience with this cancer in the VA hospital but this is the only insurance he has. The treatment goal is pallative and they staged him at 4A and to start chemo cis/gemcitabin. We want to go to a better hospital that deals with this but it is not an option right now. His Bilirubin has been at 0.6. They took CA19-9 the first day prior to chemo and it was 16u and CEA was 0.08. His ALKALINE PHOSPHATASE is normal at 109 so I am baffled as to how he has stage 4 A intrahepatocellular cholangiocarcinoma? They only went by the Pet scan and needle biopsy that is it.
Is this common?
