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elmoks….Knowledge is power which will allow you to make informed decisions. This is considered a “rare” cancer and one would want to make sure to be treated by those physicians familar with Cholangiocarcinoma. In addition too, I believe, two or more opinions are in order. Is it possible for you to gather all of your Mom’s medical records including, at tri-phasic CT, blood tests, physician’s reports, etc. in order to contact a someone else In many instances a personal visited by your Mom is not be required. Reading this board, you will notice that most patients have a strong advocate working with their loved ones. It is mandatory. The members on this board are extremely helpful and will guide you along. I am hoping and wishing that you can approach your Mom without having her think that she is giving up the control over her illness. That is not the case.
Please, stay in touch.
Much love coming your way,
MarionI am sorry to keep saying this but by reading up on this you will know what questions to ask. Everyone is so different. I still do not understand why they cannot do surgery. Again you need to ask them if they have dealt with CC often or is this unusual for them. Still would love to see your mom sent to Mayo or MD Anderson.
Thank you ALLL so much! Your words brought tears to my eyes…. Being strong sometimes is hard. From the way that I understand it her tumor is located in the bile duct, at the top, where the two go into one. If that makes since???
I think that our frustration does come from the unknown. And, that we are unsure of what questions to ask. Can you give us some advice on what questions to ask???
Teddy’s doctors have NEVER held back information. Honestly you need to read up as much as you can from our board and the web. Then you will know what questions to ask. To be for armed is to be for warned. The mystery about CC is that the only thing we know for sure is that we know not much. You want to find out if your doctors in fact have treated many with this CC. I would want an aggressive doctor to combat this aggressive disease. The more you learn, the better advocate you can become for your mother. I would opt to go to MD Anderson or Mayo Clinic in MN immediately. Your mom is still young and has a better chance of fighting this but this monster attacks with not much mercy. Yes, stints get infected or blocked. My husband was lucky that way as he never had problems with his stints. Can you tell me where her tumor is located. Teddy’s was in the bile duct valve. Please do some quick reading, then go with what you really feel. If you don’t feel that trust of all trusts with the doctors its time to change. We are all here for you and believe me you will learn fast and become the best advocate your mom could have.
Hey, I am from Kansas too. My sister had her doctor at K.U. Dr. Stephen Williamson. She also had her treatment at the Cancer Center there. You will always feel this way with this disease. I’m not sure they know anymore than they are telling you. I always felt that way. I wanted so much more information but it was never there.
I’m sorry you and your sisters are dealing with this. I’m sorry for everyone who has to deal with this awful disease:(
Take care.
My mom is 53 years old. She was diagnosed with CC in April. At that time they told us that because of where the tumor was located in the bile duct surgery was not an option. The dr’s did tell us that they could refer us to MD Anderson in Texas or KU Med Center, but my mom chose not to. She is what most would call a “home-body, and she felt like she really trusted the dr. So, she did 6 weeks of radiation and Xeloda, here, and now is just waiting, I guess. Since April she has had to have 4 different stints put in. They say that it’s common for these stints to get blocked and or obstructed. My sisters and I just wonder if this truly is normal and if the stints should be lasting longer…??? I guess that we are confused and often feel at times that the dr’s tend to hold back information from us. Do others find that their dr’s don’t tell the whole story, so to speak? Next week my mom will have a CT scan and then of couse more blood work. And then I guess we go from there….. this is where we are feeling frustrated. We feel that we are just waiting for her to become more sick. Shouldn’t/Couldn’t we be doing something now?
Any suggestions or advice that anyone might have PLEASE let us know!
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