Introducing myself as a new member

My name is Anne. I am 64 years old. I live in NJ. I was diagnosed with cholangiocarcinoma in October 2013. I was sick for a number of months prior to my diagnosis. I had no appetite, was vomiting frequently and lost about 1/3 of my body weight. My doctors at the time told me it was stress-related and treated me for that (I saw a psychiatrist who prescribed Remeron and Xanax.). I finally went to my local emergency room where a CAT scan was performed that revealed a large tumor on my liver. The gastro doctors there told me it was benign even without performing a biopsy. A surgeon at the hospital insisted on a biopsy and the diagnosis was cancer.

A family member recommended that we see doctors at Lankenau Medical Center outside of Philadelphia where a number of tests were run. The surgeon there – Dr. Ned Carp – performed a resection – 40% of my liver was removed. At the time there was discussion of chemotherapy but, I was so weak from the months of weight loss and the surgery, it was decided this was not an option. The oncological team told us there was a “window” of 3-12 weeks in which chemo would be effective. Due to my condition, the window was missed.

An MRI in October 2014 showed a small tumor in the liver. The cancer had returned. The team at Lankenau performed a microwave ablation to “burn” the cancer cells.

In January 2015, we decided to consult with doctors at Memorial Sloan Kettering in New York. The oncological surgeon there – Dr. Peter Kingham – discussed the possibility of surgically implanting a port in my abdomen where chemotherapy could be delivered directly to my liver. After consulting with the full team, Dr. Kingham said there was no need for this as I was cancer-free at the time (I’d had a clean MRI earlier that month).

In April 2015, there was a new tumor on my liver. We decided to consult with doctors at Johns Hopkins in Baltimore where there is a cholangiocarcinoma center. The surgeon – Dr. Matthew Weiss – told us that the tumor was cancerous. He saw no need for a biopsy and performed a resection in May 2015. Two weeks later, we noticed severe discoloration around the incision. This was due to a bile duct leak. Dr. Weiss “opened up” the incision – the idea being that the bile would leak out and the leak would eventually stop. Initially, he recommended a wound vac which did nothing at all. What followed was about 4 months of packing the wound 2 times a day– a nurse came to my house 3 times a week and my husband did the packing most of the time. (Chemotherapy had been talked about after the resection but, due to the open wound, the oncologists decided against it.) Frustrated, we went back to Dr. Carp at Lankenau who immediately told us a stint could be placed in the bile duct to stop the leak. (The procedure was called ERCP). About 2 weeks later, the leak stopped and the wound began to heal.

In August 2016, the cancer returned again. Dr. Carp performed a successful resection again. At this time, I have just about fully recovered from the surgery. Since the cancer has now recurred 3 times, my oncologists are recommending chemotherapy which I will start next week (10/6/2016). We are hoping that the chemotherapy treatments will prevent the return of the cancer. However, the doctors are not clear on how effective it will be. There is very little data. I am hoping there are other cholangiocarcinoma patients who have been through chemotherapy who can share their experiences with me.

It’s been an up and down 3 years. I’ve had 3 surgeries and one ablation procedure. However, in the time periods between these procedures I’ve been able to recover and I am able to live my life. (The exception being those months after the May 2015 resection.

I am thankful for my oncologists and especially for my surgeon – Dr. Carp who I believe saved my life. I would recommend him to anyone who is dealing with this cancer.