Introduction

I thought I would post my story here in case it helps someone. My husband often looked at this website as we were learning about this cancer and how to best proceed. We want to thank you for the useful information that has been posted here.

I have Stage 2a extrahepatic distal bile duct cancer and am 34 years old. I was healthy prior to this. I was having severe upper right abdominal pain in July. After a trip to the ER, an enlarged choledochal cyst was found during an ultra sound. I then had an MRI which also showed a tumor mass. After that, I had 2 biopsies because they were having difficulty with the pathology. We also sent the specimen to the Mayo Clinic in Rochester which confirmed a poorly differentiated cholangiocarcinoma tumor. I then had oncology and surgery consults at KU Med locally and at the Mayo Clinic in Rochester.

We proceeded with having a tumor resection in September at the Mayo Clinic in Rochester. They also reconstructed the bile duct and removed my gallbladder and parts of my liver and the enlarged choledochal cyst. I was in an unusual situation because at the time I was pregnant and of course had the health of my baby as my first priority. To make a long story short, the surgery to remove the tumor was successful; however, due to later complications I ended up needing an emergency C-section and we lost our daughter after a few days.

After surgery, the oncologist and surgeon I saw at Mayo both recommended adjuvant treatment. The oncologist I see locally also recommended adjuvant treatment. With these 2 similar opinions, I was comfortable with moving forward with treatment after surgery.

In November, I started 3 rounds of gemcitabine/cisplatin chemotherapy and followed that with 25 treatments of radiation. During radiation I also took the chemo pill Xeloda. I’ve just had a month break since radiation ended, and will be starting a total of 3 or 4 more rounds of gemcitabine/cisplatin chemo next week. The oncologist at Mayo did not at first recommend adjuvant radiation, but after speaking with the oncologist and radiologist at KU Med, agreed that it would not hurt to proceed with radiation as well as the chemo.

In regards to fertility options, I did not preserve my eggs or embryos. I did take a Lupron shot prior to and during chemo, which was recommended by Mayo. However, it is debatable whether or not that helps preserve fertility during chemotherapy. A recent study from October shows it may not help. My oncologist did mention to me recently that gemcitabine/cisplatin are not as toxic as some other chemotherapy drugs and that fertility could still be an option after treatment ends.

I mention these items in case this experience may be helpful to someone else.