New diagnosis and learning!
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Hello,
You are at the right place to ask questions, and I have gone through the same with my mom.
Definitely get a few opinions, as you will see in my posts how they differ. Yes, the difficult part is choosing the best treatment plan or none at all until you are ready. It’s tough! How do you feel? What is your energy? How was it before chemo? Your overall health, well being, appetite, etc…Keep going and don’t give up!
Dear Kathryn, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of CC and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results. So glad you will be paying a visit to MDAnderson. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on progress as we truly care.Billy,
Thank you for your advice, I am definitely taking notes with questions to ask my physician at MD Anderson. My husband will be with me through this process when I have my appointments.
Kathryn
Kathryn….following the excellent responses by Debbie and Billy I would only like to add that you are entitled to the medical records from anyone involved in your diagnosis and treatment. Don’t hesitate from doing so.
Good luck with MD Anderson and please keep us in the loop. We care and we are in this together.Hugs
MarionKathryn,
In addition to your questions above, I would also ask if they can test your tumor for its molecular genetics profile, as that can lead to options with clinical trials and such. I would think MDA would do this automatically, but at Sloan we actually had to ask since it wasnt offered up front, which was a little surprising. I would also ask if there’s any chance the tumor is resectable, and why or why not. Different surgeons have varying degrees of aggressiveness, but there are unfortunate circumstances (distant mets for instance) which make the tumors inoperable to all surgeons. Bring someone you trust with you into the room as a second pair of ears or to ask more questions, and keep copies of all your lab and scan results. You never know when you’ll need to send them to someone for another opinion.
Good luck,
BillyKathryn,
Welcome to our on line family. I am sorry that you are dealing with Cholangiocarcinoma. This will most likely be a long ride with ups and downs along the way. In my opinion, the best thing you can do is align yourself with a medical center that is highly experienced in treating CC utilizing a multidisciplinary team approach (surgeon, oncologist, radiologist, etc.), and you are doing that by seeking a third opinion from MDA. They should be able to give you a good understanding of exactly what you are dealing with as well as guide you to best treatment options for your specific situation. Try to stay positive – there are many treatment protocols that are achieving success. Wishing you all the best,Debbie
Hello All,
I was diagnosed in September after the results of a liver biopsy. I did have an ultrasound and CT previous to this do to right flank pain. The pathologist had said it was Adenocarcinoma of unknown origins stage 4 metastasized. What a shock this was. Then my oncologists said they believed this to be cholangiocarcinoma. I then had a second opinion at Moffitt Cancer Center and they felt this was correct what the pathologist report had said. They started me on Gemzar 1GM and Oxaliplatin 100/mg/20ml. Every two weeks Gemzar on 1 day and Oxaliplatin the 2nd day. They did not want to combine these two chemo drugs according to their protocol. I recently had a restaging on 1/4/2017 and the chemo has not been effective and the tumor has grown in the liver. I have two tumors at different locations in the liver. I am going now to MD Anderson as I feel I need the best advice I can get, so here comes the 3rd opinion. I am still learning so much about this cancer and I am a little taken back that no one has told me what stage I am in as far as the cholangiocarcinoma: Intrahepatic cholangiocarcinoma, Perihelia cholangiocarcinoma or Distal cholangiocarcinoma? I will definitely have everything written down to discuss these questions. My appointment will be on 2/21/2017 for the first appointment and then back again on 2/23/2017 in the GI Clinic to discuss my options. On a side note here the pathologist at MD Anderson had my liver biopsy slides and said it is cholangiocarcinoma as the primary site. Any words of wisdom before my appointment would be greatly appreciated. My health has always been good and I have never had any problems till now. I am 63 yrs. old and no one would ever know what I am going through unless I told them. Thank you for being here.
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