I am a 68 year old woman diagnosed with Cholangiocarcinoma in 2015 stage 1B no l
- This topic has 1 reply, 2 voices, and was last updated 5 years ago by
.
-
Posts
-
Hi SGBuckle,
Welcome to our community. Thank you for sharing your story. I hope the latest tumor board review offers you some clarity about your case and if needed, some good treatment options.
It was positive to hear that your medical providers have worked with you to honor your personal preference of avoiding chemo and radiation. The science is advancing for treating our rare cancer, and there may now be newer options that you may feel willing to consider given your personal views, particularly if your doctors feel surgery is not fully doing the job of mopping up all cancer cells. Have you had genomic profiling to see if your cancer has mutations that can be treated through some of the new non-chemo cancer meds (they are mostly available through clinical trials)? Also, if the cancer is only in the liver, there may be localized treatments possible that can send chemo or radiation directly to the tumor — they can involve much less treatment time and fewer side effects than the older approaches. As an additional thought, a recent study (BILCAP) showed many patients benefited after surgery from adjuvant chemo with capecitabine. Capecitabine comes in a pill form and is lighter on side effects than some of the other chemo options.
Cholangiocarcinoma can be hard to diagnose, just as your own experience highlights. Tumor markers can start moving up months before there are clear findings on a scan, and doctors are cautious because markers are not 100 percent accurate in determining the cancer is returning. Awaiting a clear diagnosis is nerve-wracking – I hope you have answers soonest and, should more treatment be needed, that your doctors work with you to again find an effective treatment you are comfortable with.
Please keep us posted. Regards, Mary
I had been complaining almost 1 year about my fatigue and lack of appetite. It was not until March of 2015 that I met with my endocrinologist for my quarterly check up. I showed her the scabs on my body and my overall feeling that I was dying. Unbeknownst to me I was already jaundiced. When my lab work was completed, she called to tell me to go to the emergency room and have them run tests. I was diagnosed with intrahepatic adenocarcinoma of the bile duct. My bile duct had shriveled up and bile was going into my blood stream, which caused the scabs. Four days later I had surgery to remove the gall bladder, small part of my pancreas and the bile duct that was affected. A Whipple procedure was performed. No lymph nodes were involved. I was pronounced cancer free. I was offered chemo and radiation, which I refused. In March of 2018 another tumor was found in my liver. I was told it was not resectable. I went for a 2nd opinion at UT MD Anderson Cancer center in Houston, TX. They told me I needed to do chemo and radiation before they would consider surgery. I refused. My case was taken before the review board it was decided there was no reason why surgery was not an option. I had surgery in August 2018 to remove the tumor successfully. In January 2019, my tumor markers started going up. I had blood work drawn and a CT scan. Tne scan sowed there was something near my portal vein and my hepatic artery. The case was subitted to the review board and they recommended that PET SCAN be done.This week I had a PET scan ad ministered but they could not find the tumor. As of today, my case is once again before the review board. I am waiting to hear their recommendations.
- The forum ‘Introductions!’ is closed to new topics and replies.