82 year old mother newly diagnosed
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September 20, 2010 at 1:15 pm #41790ronidinkesMember
Stents are only temporary, they migrate and they can become infected.
I would have a EUS done as well.
My mother had a negative PET scan, negative biopsies, and it still turned out to cholangiocarcinoma and to top it off they removed 27 lymph nodes, and 2 came back positive to it was stage 4…..
I would find a major medical center and get in touch with a surgeon, because whether this is benign or cancer, she cannot live like this.
Best of luck and stay in touch, your mother is stronger than you think!!!!
Hugs,
Roni DinkesSeptember 20, 2010 at 1:10 pm #41789devoncatSpectatorHi Lisa,
Welcome to the board. This disease progresses differently in everyone so there is really no hard and fast rule.The stent will make your mom feel better and that is half the way there. I agree that your mother should be told as much as possible. She may have things she wants to do or say.
We are a great support…both emotionally and educationally. We are here for you if you need anything.
Kris
September 19, 2010 at 11:39 pm #41788lisaSpectatorHi Lisa and welcome to the board.
If your mother gets a stent put in, it is through an ERCP procedure. In your mom’s case, they may just go in and take a look around before deciding what to do.
As a patient myself, I would strongly advise you to tell your mom that they suspect it is a tumor. It is better to be prepared than not. If it is not a tumor, then hurray! Telling your mom also gives her an explanation of why she feels poorly.
There is no saying how quickly cholangiocarcinoma progresses since it seems to be different for each patient. Some people last for years and some for weeks. It depends on many different factors that are really unknown at this time. Overall, if a person has been or is generally healthy, I believe that helps lengthen survival time. A positive attitude on the part of the patient and the caregiver helps as well. I hope that your mom will be one of the long term survivors!
September 19, 2010 at 10:30 pm #41787lainySpectatorHi Lisa, of all the questions you can ask the one that can probably not be answered is how fast it progresses. The only thing we do know about CC is that we never know and everyone is different. It depends where the CC is located, how large the tumor is and what can be done. Good luck with the ECP and please keep us posted on her progress.
September 19, 2010 at 10:20 pm #4046caregiver1SpectatorHello,
My Mom was having nausea, extreme heartburn and vomiting occasionally after eating. She had her liver function tests done and they were extremely high. ASK Pos 400’s, AST or ALT was in the 200’s and the other in the 100’s. Her bili was only 0.7. Ultrasound showed bile duct “obstruction” although the radiologistt stated it looked like a tumor was growing off her bile duct and her gallbladder is very enlarged.
She is going to have an endoscopic ultrasound (is this an ERCP?) and hopefully they will be able to stent. she is not really a surgical candidate as she has chronic anemia.What to expect? My Mom lives with me and is quite active. Still shops and drives. Been feeling very off last couple of weeks and recently only went two weeks between blood infusions (for her anemia).
She doesn’t know this is most likely a tumor. I didn’t want to upset her too much until we know more. How fast does this progess?
Thanks for listening!
Best wishes to all of you.
Lisa -
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