I was first diagnosed in November 2010. My day started out like any other day at the office until around lunch time when I began having severe abdominal pains. Within a couple hours I had vomited 6 or 7 times. I could hardly drive myself the 10 minutes home from work I was in so much pain. I suspected that I had appendicitis and my then boyfriend came to take me to the ER. At the hospital they took blood work and then ordered a PAP Smear to prove that I didn’t have STD’s!! Only after the results came back negative did they begin to take me seriously and order pain meds and other tests. I was in so much pain and furious that clearly my young age was responsible for them treating me this way! They then admitted me to the hospital and scheduled a laparoscopic surgery the next day to check out my appendix and remove it in the event it was necessary.
When I woke up from my surgery I was told some shocking news, they had in fact removed my inflamed appendix but while they were in there they had discovered a 13 cm tumor on my liver. The doctor told me that the chances of it being malignant were slim to none, and that it was most likely a benign tumor that is commonly found in young women. However, they wanted me to sign consent forms for them to go back in the next day and remove the tumor along with a portion of my liver. Thinking doctor knows best I signed consent and was cut open the next day. When they got my pathology reports back the doctor basically told me it was a good news/bad news scenario. The bad news was that the tumor was malignant, but the good news was that they had removed it all and I no longer had cancer in my body. I was then told I needed to come back in 6 months for follow up scans. I went through the weeks of post op recovery basically thinking I’d dodged a bullet and feeling pretty darn lucky.
Come Feb 2011, I could tell something was off. I just didn’t feel right and then one day lying in bed I felt a protrusion in my stomach. Ever the worrywart, I hopped on Web MD and became convinced it was an Ectopic Pregnancy. My boyfriend reassured me, made some jokes about how it was probably just constipation and for the next couple days made me take Miralax. When I collapsed in the shower, that’s when I decided something was definitely wrong and went to the emergency room. A CT Scan showed that the cancer had come back. I had 2 tumors on the remaining half of my liver, but the cancer was also now in my abdomen and my gallbladder as well. They admitted me to the hospital and I spent a couple days there. The staff oncologist felt my case would be better handled elsewhere and recommended MD Anderson. I got all my medical records together and delivered them to MD Anderson. 5 days after being admitted to the ER, I had my first appointment at MD Anderson. This appointment was the first real information I got on my diagnosis. Dr. Patel told me about FHC and explained that my care would be handled by himself as well as a liver specialist, Dr. Amed Kaseb. I was still under the impression that this wasn’t a huge issue. I thought they could just do surgery again and get rid of it, but the doctors told me that due to the size of my tumors, the high re-occurrence rate of FHC and the fact that the cancer had already spread surgery wasn’t an option. They also informed me that I wasn’t a candidate for liver transplant for these reasons.
I was put on an aggressive form of chemotherapy via 5fu and Interfuron. I had a port installed and began receiving my treatment on a schedule of 2 weeks on, 1 week off. I reacted VERY poorly to the treatment. I couldn’t keep anything down, could hardly get out of bed, lost over 25 pounds in 2 months. Needless to say I had to quit working, a devastating blow considering I had a great job that I really liked and was paying the bills in a way I had never been able to prior to that. After 2 1/2 months of the 5fu/Interfuron I had my next round of scans. I still wasn’t really knowledgeable about my condition and was basically under the impression that the chemo was going to have “cured” me and the scans were going to say everything was just peachy. Imagine my dismay when I learned that not only did I still have FHC, but that the chemo hadn’t worked and my tumors had doubled in size. My doctor’s then told me that the next step would be to try Nexavar, which I started right away. I had my next round of scans on July 30, 2011. They revealed that the Nexavar seemed to be maintaining my condition. They have told me that the Nexavar will never get rid of the tumors, but that because at the present it is keeping them from growing the current plan is to continue with Nexavar for the rest of my life. Dr. Kaseb says that if they ever come out with a clinic trial that is Nexavar plus something else we can try that, but they don’t want to take me off the Nexavar due to how rapidly the cancer was growing previously. It’s pretty discouraging being told the cancer will never go away. At 24, I wasn’t expecting to be ill for the rest of my life. Or to be told I can never have another child. Not to mention the chronic pain associated with my tumors. I’m trying to cope as best as possible, but most days are pretty tough right now.