A Letter from my Aunt "From here on out, I'll call it EH." - Aunt Andrea
The next morning served as a second opinion about my diagnosis.It is tough to get a second opinion about anything if it’s the first time hearing about it.Dr. Jane also told us that: ‘it was a rare cancer that affected about 200 cases per year in the United States.’Still, many questions needed clarification and decisions needed guidance, so I bombarded Dr. Jane.Fortunately, my Aunt took meticulous notes throughout the consultation.If it wasn’t for her, half of the conversation would have been lost to time.I was fortunate to have her by my side.
Special thanks to my Aunt for also saving me the time on another extensive blog entry.The following is the excerpt:
First of all, let me say that I was impressed with your intelligence this morning! You have really studied your test results, and asked some very good questions. So here's a recap of what I wrote down:
Epithelioid hemangioendothelioma (from here on out, I'll call it EH!) has never been seen by Dr. Jane or anyone at Los Al Hospital pathology department before.
It is considered intermediate compared to hepatocellular carcinoma--I didn't write down what a lesser thing would be.
It probably started in your liver; it can metastasize. The pathology report indicates that there are possible metastatic lesions in the lung and lining of the abdomen. She didn't say much about this--I think this is something that the oncologist will address.
Regarding the alkaline phosphatase: your liver is making it within normal limits right now. She (or whoever) ordered a CAT scan of the chest because of the increased levels of alkaline phosphatase seen from the bone.
There is possible bile duct involvement, and it could have started in the bile duct.
Dr. Jane does not recommend another biopsy. But I don't think she ruled it for later either, if your oncologist recommends it.
She suggested you ask the oncologist about a referral to City of Hope or another such place that specializes in cancer treatment. She made some suggestions for how to ask for this without offending the oncologist. You can ask him how much experience he has with E.H. and explain that because of your age, you want to be aggressive (my words) in seeking treatment. Dr. Jane thinks it is unlikely that the oncologist has seen many cases of this before. Note: I'll ask Howard to call our friend in the Urology department at City of Hope to see what he thinks about their liver department.
Your liver has mostly been replaced by the EH; you have minimal healthy liver tissue remaining. But the liver can regenerate itself. (Did she say with 1/7 of it remaining? I can't remember and didn't write that down.)
Your liver is functioning, but with difficulty, thus the jaundice. (I'm not sure what I meant by that. I think it is a sign that the liver is struggling.) Dr. Jane sent you for another blood test of liver functions to see if there has been any change since the last blood test.
There is extra stress on the kidneys because of the liver involvement. Your urine is dark because of the bile being excreted. Your kidneys are okay for now, but that is why she recommended the changes in your diet--drinking lots of water, cutting down on salt, fat and protein. Eat frequent smaller meals rather than big meals, because big meals are harder for the liver to handle. If your kidneys were malfunctioning, you would have more symptoms, such as accumulation of fluid.
More on City of Hope: they have the best pathologists, she said. They determine the best chemotherapy by inoculating the patient's cancer cells with different chemo agents to see how effective they are. Not too many places do this. Your liver biopsy cells are frozen somewhere now. Dr. Gee can approve referral to City of Hope, so you should see him ASAP to discuss this. She wants you to see him on Friday.
Dr. Jane reviewed some of your lab results. There is no hepatitis A, B or C seen. You have evidence of a possible Epstein-Barr infection sometime in the past. This is a possible factor in some liver diseases, but I think she said that she does not think it has anything to do with EH.
You talked with her about how long the EH might have been there. She said possibly a year or even two years ago.
Dr. Jane said that hopefully you won't need a liver transplant. She wants to be kept updated about how your case is proceeding. And she said she'd pray for you!
Well, that's about it. Let us know how it goes on Thursday and Friday, if you see Dr. Gee again.