Hello. First post and looking for information
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Hi Lisa,
I am glad you found us, but at the same time sorry you received this diagnosis. I hope you have also found the resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.
It is good news, as you describe, that your tumors seem to be responding to treatment, your tumor marker looks better, and your scan shows positive results. Fingers crossed this continues.
The most common discussion of second opinions we see around the time of diagnosis is consultation with an experienced liver surgeon to see if resection surgery is possible. This question comes up for patients whose cancer is confined to the liver and bile ducts, and has not spread. You indicated that surgery would be considered after the ten-month course of chemo is complete. If your positive results continue, you may wish to ask your doctor about having a surgical opinion earlier.
The CCF has a tool on its website to help you find doctors experienced in our rare cancer. I will add the link at the bottom of this message.
Some patients have MRIs, others are sent for CTs. I had an MRI at the time of diagnosis, thereafter it has been 100% CT scans. My impression is the choice among CT, MRI and PET has to do with what the doctor is trying to look for, as they all do their job but differ as to what types of features are most visible. In my case, my insurance will only pay for scans done in a stand-alone facility so I have had to research which facilities have the highest technology CT scanners.
The science for our cancer is improving rapidly, and there are new treatments coming on-line or in development each year. There are good reasons to be hopeful. I join you in prayers for a cure.
Regards, Mary
Hi, name is Lisa. I’m 55 and was diagnosed in June 2020 first with a large malignant tumor with lesions around it in my liver. I had a CT scan and Pet scan at this point. (Adenocarcenoma is what my biopsy came back with, which means its mets from another area) My cancer was of unknown origin. My only marker that was high was the CA125, which seems to be uncommon for Cholangiocarcenoma.
Kaiser sent off for a cancer ID test and it came back with a 90% probability of pancreatic / cholangiocarcenoma. Pancreas has been ruled out since no tumors are present.
I have been diagnosed with stage 4 Intrahepatic cholangiocarcenoma, mets to the liver. There has not been any imaging/tests done that shows the cancer within my bile duct and my doctor doesn’t want to do anything invasive that could cause seeding. The chemo is working, she says that confirms the diagnosis.
I just had a 3 month Pet scan and the lesions around the large tumor are gone and the main tumor is shrinking. My CA125 was as high as 714 and now down to 92. My liver function is still good with no blockage. I’m not a match for immunology treatments and the only match for clinical trial is the IDH1.
I am on Gem/Cis/Avastin(day1 only) and the plan is to continue through 10 months and then re-scan to see if operable, or chemoembolization or proton radiation.
I’ve read that people get MRI’s instead of the scans I’m getting. Does the bile duct show better in MRI?
I will be getting a CT scan soon to check the blood clots I had at the beginning of this and a spot on my lung too small to see on Pet
Should I be looking for other confirmation of the cancer within the bile? I’m in California. What doctor or cancer center do you recommend for a second opinion? Has anyone else been diagnosed with a Cancer ID test?
The way I understand this cancer from my doctor is that they can’t cure the bile duct cancer. So I guess we all just get treated for the occurrences of tumors, complications, etc that come from it? I was told the cancer cells would always be in my blood.
Praying for a cure.
Thank you for your ear…this is really hard as you all know,
Lisa
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