August 4, 2016 at 3:13 am #92832lisacraineParticipant
Everyone has given such good advise already. MDA is topnotch and so is Dr. Javle at MDA. I was diagnosed stage IV ICC in 2010 and had surgeries, chemos and radiation, a multidisciplinary team is crucial. Sending prayers
LisaAugust 2, 2016 at 8:37 pm #92831helpformom2016Member
Houston TX here too.
Im so sorry you are going through this. It is a lot to take in. Do you have someone who can be there for you?
My mother is being treated at Methodist. She is on Medicare so no MD Anderson for us. But I have not once doubted that we arent in great care.
She has HepC, some cirrhosis and enlarged spleen. Her mass is 4.2cmx3.5cm as of June 26th- right posterior lobe, no other abnormalities seen in imaging. Her blood work all looks good- no crazy high levels, tumor markers and liver/kidney function so we are grateful for that.
She is not a candidate for resection, unfortunately. Due to the size, and location of the mass but predominately due to the fact that she has cirrhosis.
Shes had CT/MRI/Endoscopy and yesterday a biopsy- tomorrow a PET Scan.
We have completed the liver transplant evaluation. (pending biopsy and PET)
Hopefully by next week we can get started on treatment.
Sorry for rambling our story. It is very overwhelming and we’d be lost without each other.
I hope your appointment today was successful and your Dr has set you on a path! The waiting is the hardest part. This site has been so helpful.
Im certainly no expert but logistically we are close and Id love to hear how you are doing.
~megAugust 1, 2016 at 10:07 am #92830middlesister1Moderator
Welcome to our board and very glad that you have found hope from our members. Best wishes that down the road your story will be one that can give hope to others.
CatherineJuly 31, 2016 at 1:10 am #92829marionsModerator
Beth…….thank you for joining in, we are happy to see you on board. Please make sure to have all records on hand, including the consultation notes from the upcoming consultation with the Gastroenterologist.
Joe is correct in that a surgical consult is of most importance and that some surgeons are more aggressive than others.
Resection (removal of tumor) is the first line of treatment for this cancer, hence you would want to consult with a physician very familiar with this disease. Does your insurance cover MD Anderson? If so, then I would consider making contact with their Hepatobiliary Department. The outcome of a surgical consult will set the pace for all other options.
Please stay in touch, we care and we are in this together.
MarionJuly 30, 2016 at 9:36 pm #92828jpmskiParticipant
You have MD Anderson in your backyard so that’s great. But if I were you I would reach out to Dr. Parek’s office at the USC Hospital in LA. He’s a very experienced and confident surgeon.
I would get them in the loop. If you are lucky enough to have cut it early, you do not want to sit around and wait.
I’m in Denver and the surgeons here said there’s no way my mom’s tumor was operable, but Parek’s office was ‘I can totally get that out.’ Ultimately too much time passed and the cancer spread and he wasn’t able to do it.
The GI and IR doctors are about figuring out ways to ‘reroute the plumbing’ around the tumor. You want it out, so they are very secondary to that mission. Don’t get sidetracked.
You need to lower the elevated bilirubin but me, I would take the simplest solution for that problem to that right now. Until you have a definitive answer about surgery, from multiple surgeons.
What if there’s a minor/major complication from one of the the GI procedures? Best case, it costs you time. Time that you don’t want to spend on that. Good luck.
JoeJuly 30, 2016 at 9:12 pm #92827daisy1Participant
All the very best to you Beth, autoimmune diseases are not fun. I have one myself. Best wishes for your good health.July 29, 2016 at 11:43 pm #12655bethParticipant
Thank you for allowing me to join. I’m Beth and I’m 55yrs. old. I’ve been battling Autoimmune Hepatitis for about 30yrs. Recently my eyes became yellow and my liver enzymes went higher so my PCP ordered bloodwork and an Ultrasound. They said my liver and spleen were enlarged so I was then sent for a CT scan. This came back as suspicious for Intrahepatic Cholangiocarcinoma, but my spleen is fine. Markers for tumors were perfect with the CA 19-9 being only slightly elevated. The CT scan showed that lymph nodes and other organs were all clear and the tumor is 3 x 3cm. I will see a new Gastroenterologist this Tuesday to discuss where we go from here.
This site has given me a lot of hope; I see that some of you have lived to, and beyond the 5yr. mark. My spirit and attitude is very good and I hope that it can stay there.
Blessings and Warm Hugs to You All, Beth
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