walk

Sarah,

I am so sorry for your loss.

When I read threads like these, hear others comments and know my father’s story, I am left angry at our health care system. If such a good number of us find our way here, how many don’t know about this site or don’t use the internet or have something rare besides CC and on and on. It is such a sad situation.

Jan

This is a near and dear topic for me at the moment. I honestly don’t know how some employees of insurance companies look at themselves in the mirror. The scam du jour for us is that my dad has successfully petitioned BC for OON care. What stuns me is how this plays out. The specialist writes his letter of medical necessity and gets his reply including which insurance codes they will cover such as surgery, hospital stay of up to 5 days, etc. The doctor relays that to us. However, BC sends my dad a letter saying they will only pay for office visits, not surgery or hospital stays etc.

My conclusion is that typically the patient will believe BC and not the physician resulting in the patient opting for in network services or no care at all. Is there anything more devious?

I would love to hear others’ stories on this as it is an ongoing issue for us. So far, the specialist has been great. I think it helps is that his practice is a “designated BC cancer center for rare and complex cancers”. It just happens to be OON for my dad and I am not sure if there are any other similarly designated centers in network. Certainly, none in his hometown.

Tess, Jim:

Was the AFP mentioned? I have copies of my father’s labs and haven’t seen the CA 19 on there and I am wondering if it goes by something else. AFP is the only of my dad’s numbers that are a tip off for liver trouble, that and, oh yeah, he has a mass as big as his hand….

I found this informative on CA19

http://www.labtestsonline.org/understanding/analytes/ca19_9/test.html

Dnice

I understand the size of the tumor can be reason to cancel surgery, but I don’t understand why they would cancel the chemoemoblization. Was there another reason than size? My father has an 11×14 cm tumor and never has size been mentioned as a reason for not doing chemo embolization.

I defer to others with more experience, but one thing I have learned is not to take the first no as an answer.

Peace!

Hi Tess,

I have thought of you often in the last week and wondered how you are doing. Words seem so inadequate at times like these.

Friends of mine who have suffered losses (one of a partner, one of a child) found comfort in their afterlife questions from several books: Conversations with God, Forever Ours and the Tibetan Guide to Living and Dying.

I wish you peace,

Jan

UNC Hospital in Chapel Hill and Duke University in Durham are both cancer centers and many on the board have experience with them.

Susan,

How far from Charlotte? You may want to check out Dr. David Iannitti.

Jan