hello

Your mom must be a trooper. It sounds like you are ready to get on top of this and that’s what you need to do. Read, study, ask questions. Most of the information that you will read published online – will not be very positive.

I remember when my brother was first diagnosed I would stay up late into the night reading everything I could find on-line about cholangio – every couple of hours I’d just have to get up and go outside because I couldn’t take all the negative information (sometimes I would sob for a while) then I’d pull myself together and get back to work.

Now, these articles don’t affect me at all. Mark has already doubled what they told us originally and we are constantly on the look out for new things that might help. You need to find out exactly what your mom is dealing with first. Do they think she is surgically resectable, what kind of cholangio does she have, intra, extra, etc, how big are her tumors, does she have metastatic spread & where. This will help you to determine different kinds of treatments that are available to her.

Also, you must seek out expert opinions. That means if you need to travel – do it, if you need to call in some favors – do it. You will need an array of opinions from oncologists, surgeons, interventional radiologists and also some in the alternative medicine field.

Just keep in mind that Dr’s are selling a service (themselves), you are the customer. You need to shop for a Dr. that is positive, sensitive and willing to be aggressive if that is what your mom and your family determine they want to do. Go to several and pick one that feels right for your mom.

Keep us updated! Everyone here on the website will help you.