68 year old father diagnosed with Stage IV ICC we are baffled?
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Jamom….perfect. Please keep us posted. Fingers crossed for an informative visit coming your way.
Hugs,
MarionSorry 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.Jamom…….sorry, but I am trying to understand, you were told to stay with the original oncologist? Is this the VA doctor?
What type of insurance does your father have?
Hugs,
MarionThank 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?Theresa……already you made the right decision by searching out the opinion of a specialist in a center treating a high volume of cholangiocarcinoma patients. Good luck and please share with us the outcome of the visit.
Hugs,
MarionDear Theresa, I am thrilled you are going to a different Hospital and the best advise I can give at this point is FORGET everything up to this point in time and start anew on Monday and know that you are at a good place! Make a list of questions so you are prepared and I hope 3 of you are going as more ears to listen are very helpful. I also want to send you this helpful site:
http://cholangiocarcinoma.org/newly-dx/
Please keep us in the loop on Dad’s progress and what you find out. Best of Luck!
Hi All – I posted back in November under cancer marker post and have not been on since as we are still dealing with questions about my father’s diagnosis and we have more information that makes us more baffled. Happy New Year! I am praying for each and everyone of you and hope that more information about this cancer comes out so there will be more hope.
Here is my original post:
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?Update – we finally got him another insurance so we are going to MSKCC on Monday. They will do a Cat Scan. 5 years ago we found out my father had 6 lesions on his liver and had to do 2 biopsies to rule out liver cancer and at that time the lymph nodes were enlarged as well as his spleen. I shared my father’s history with oncologists and they also stated that this is very strange. The VA never biopsied my father’s lymphnodes. After 6 months thank God my father is feeling well his blood levels are perfect except for his low platelets and WBC due to 4 rounds of chemo cis/gem. My oncologist friends are thinking my father has lymphoma and not ICC. I hope and pray we get answers. The gene mutations that came up was IDH2 only not IDH1 and C-Ret.
Any advice would help as we need to find the right diagnosis and move forward with the right treatment.
Happy New Year!!
Theresa
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