Childhood Cancer

Childhood Cancer

Hepatocellular carcinoma

Hepatocellular carcinoma is a rare cancer that is more common in boys than in girls and that is diagnosed most often in children who are older than 10. Risk factors for this form of liver cancer are:

•  The hepatitis B virus (if passed from mother to child at birth).

•  Certain inherited metabolic conditions, including glycogen storage disease and tyrosinemia.

•  Biliary cirrhosis, Alagille syndrome, or progressive familial intrahepatic cholestasis.

One particular form of hepatocellular carcinoma, fibrolamellar carcinoma, occurs most often in adolescents.

Kennedy had just turned 12 at the time of her diagnosis. She had been struggling with intermittent vomiting. I noticed that she had lost some weight but attributed it to her very busy and active basketball season. I took her to the doctor for an exam on a Friday. She didn’t comment on anything regarding her physical exam but ordered a few blood tests, just to check out organ function. On the following Monday, the clinic called and said Kennedy had increased liver enzymes and wanted her to have an ultrasound, which was scheduled for the following day. I knew right then that something was horribly wrong. We barely made it home from the ultrasound appointment and the clinic was calling telling us to come back in. When we got there, they told us that there was a large tumor on her liver and they had already set us up for an appointment at the closest children’s hospital the following morning.

Her morning consisted of an MRI, CT scan, and lots of blood work. A few hours later, the oncologist took us in a room and told us they were pretty sure Kennedy had hepatocellular carcinoma, a liver cancer that is extremely rare in kids in the United States. She actually had three areas of cancer on her liver—a very large tumor hanging off the left lobe and two large, ill-defined areas of cancer in her right lobe. The only good news was that there were no signs of cancer anywhere else; it was all contained to her liver.

In addition to the signs and symptoms listed earlier in the chapter for all liver tumors, 15 to 20 percent of children with hepatocellular carcinoma have jaundice (yellowing of the skin and whites of the eyes caused by excess bilirubin in the blood) or fever. Poor appetite and weight loss are common. If the tumor ruptures, bleeding into the abdominal cavity may occur.


After hepatocellular carcinoma is diagnosed, the staging process is identical to the process used to stage hepatoblastoma (see pages 31–32).


Hepatocellular carcinoma cancer cells are very aggressive. These tumors often involve all lobes of the liver, making surgery difficult. This is why pediatric oncologists carefully consider the child’s age, stage of disease, and type of cancer cells to choose the treatment with the best chance for cure. All surgeries for children with hepatocellular carcinoma should be done by pediatric surgeons with experience removing liver tumors and who have access to liver transplant programs. The most commonly use treatment plans, based on stage of disease, are described below.

Stages I and II: Treatment of stages I and II hepatocellular carcinoma usually consists of surgery to completely remove the tumor, followed by chemotherapy (using cisplatin and doxorubicin). If tumor tissue is in more than one lobe of the liver, it is not always possible to remove the tumor completely at diagnosis. In these instances, preoperative chemotherapy may shrink the tumor to a size that makes removal possible.

Stages III and IV: Children with stage III or IV disease are treated with chemotherapy to try to shrink the tumor so it can be completely removed. The most commonly used combination of chemotherapy drugs includes cisplatin and doxorubicin. If the tumor shrinks enough, it is removed surgically. If it cannot be completely removed, liver transplantation is sometimes recommended. Occasionally, a two-step treatment called transarterial chemoembolization is used. This involves giving chemotherapy directly to the tumor via a catheter and then cutting off the blood supply to the tumor by plugging the artery with material (e.g., metal coils or gelatin sponge). Other treatment options include cryosurgery (freezing all or part of the tumor), injecting the tumor with alcohol, or radiation therapy.

We took Kennedy to a different and well-known hospital for a second opinion. The pediatric oncologist there was honest in telling us that there wasn’t a protocol for this type of cancer in kids. We also met with a surgeon who worked exclusively with livers. He informed us that attempting resection at this time would be a huge mistake. Treatment was to consist of cisplatin and doxorubicin infusions done inpatient at the hospital. Then, she would start the newer oral chemo medication called sorafenib and take it twice daily until her next IV chemo. The entire cycle was 21 days in length. Honestly, I questioned whether or not we should even do chemo. The prognosis was grave and I didn’t want the last days of her life to be full of the type of suffering she was about to go through. I talked to her oncologist about my feelings and she assured me that we would know early on if this was working or not. We would do two cycles and then repeat scans. They also followed a tumor specific protein called AFP to give us an indication of tumor response.

After two rounds of chemo, she had repeat scans. We were all shocked to hear that her tumors had shrunk 50%! Each round continued to bring a drop in her AFP and shrinkage of her tumors. After five rounds of chemo and one round of chemoembolization, she was listed for transplant with a Status 1B, which is a rare listing type reserved for kids. Within 5 days of her Status 1B listing, we received a call that 5 months prior wasn’t even a possibility. On May 27, 2012, Kennedy received a lifesaving liver transplant.

A child with a previously damaged liver who is diagnosed with hepatocellular carcinoma may not be eligible for surgery. For example, a child with liver damage from hepatitis B or C could not survive if large portions of the liver were surgically removed. In such cases, only small tumors are removed.

Coley’s surgery was very scary, I think more for us than for her. She has been my role model for bravery throughout the entire process. The surgery took a few hours and has left her with a large scar that goes from one side of her stomach to the other in an upside down U. I was very scared to see her in intensive care, because I was afraid that I would break down when I saw her with all those tubes. But after waiting all those hours, when we were finally able to see her, she looked so beautiful. She had made it!