Weak Legs Lead 20-Year-Old Nevada Woman To Discover Rare Advanced Liver Cancer

“After a long and difficult process involving numerous tests, scans, blood work, and finally a biopsy, her cancer was confirmed,” Anderson writes. “She was referred to the Mayo Clinic in Phoenix, Arizona, for specialized care.”

Anderson, who describes her sister as “the silliest, happiest, and most caring person in all of our lives,” continued, “There, we learned the heartbreaking news that the cancer had metastasized to her chest, and that she also has three blood clots in her heart.

“To make things even more complicated, her inability to get up because of her muscles is not believed to be directly related to the cancer, prompting further evaluation by a neurologist.”

Liver Cancer: Overview

After surgeons reviewed Busby’s case, they decided surgery wouldn’t be possible. Anderson explained further, “Her treatment plan now includes starting immunotherapy to target the cancer throughout her body, along with Y90 radiation beads being injected into her liver. This is going to be a complicated process that will need to be constantly reevaluated and adjusted based on the efficacy of treatment.

“Throughout all of this, Haylee has remained incredibly strong. She has our mom and grandma by her side in Arizona, so she’s not alone.”

Busby ultimately began her first round of  immunotherapy treatment on April 23, 2025.

The type of liver cancer Busby is battling is called fibrolamellar carcinoma (FLC), which the National Cancer Institute (NCI) describes as “a rare cancer of the liver that usually grows in teens and adults under 40 years old.”

“This type of cancer is different than other types of liver cancer because it happens in people who have healthy livers. Other liver cancers tend to grow in people with livers that have been damaged by alcohol abuse or infection with certain viruses,” the NCI explains.

“Fibrolamellar carcinoma may be called by many different names, including eosinophilic glassy cell hepatoma, fibrolamellar oncocytic hepatoma, fibrolamellar hepatocellular carcinoma (FLHCC) or FHCC.

RELATED: Advanced Liver Cancer Diagnosis, Treatment, and Symptom Management

Additionally, the NCI states, “FLC is so rare that there is little data on how many people have it. It is thought to make up 1% to 5% of all liver cancers.

“FLC affects both men and women and is thought to occur in about one in five million people in the US. ”

Understanding Advanced Liver Cancer

If you are diagnosed with advanced liver cancer, you have options.  Even a late-stage diagnosis has an open door to a range of effective treatments. Medicine has made huge strides that can help patients live longer, healthier lives.

“We have so many treatment options available for liver cancer. That is a fact,” Dr. Ariel Jaffe, a board certified internist, gastroenterologist, hepatologist, and assistant professor at Yale University Medicine tells SurvivorNet.

“And what options are available to patients typically depend on the state of the background liver, like how sick is the liver? And then second what is the extent of spread? And so there are a lot of factors at play.”

Personalized care plans, innovative therapies, and clinical are shaping treatment, offering a new sense of hope and possibility for patients and their families.

RELATED: Treating Liver Cancer With a Tailored Approach 

Advanced liver cancer refers to a stage of liver cancer where the disease has progressed quite far, often involving significant liver damage or spreading beyond the liver. It often stems from chronic liver diseases, such as hepatitis B and C infections, cirrhosis, or exposure to toxins called aflatoxins found in contaminated foods and mold.

Risk factors include excessive alcohol consumption, obesity, and diabetes.

Understanding Liver Cancer — Signs, Symptoms & How it is Treated

Determining the advancement of liver cancer means assessing the size, location, and spread of tumors, as well as the liver’s functionality and the presence of cancer in nearby lymph nodes or distant organs.

Staging Liver Cancer

Staging helps doctors understand the extent of the cancer and plan the best treatment approach.

The most commonly used system is the TNM system, which considers:

• (T) Size and number of tumors
• (N) Spread of the cancer to nearby lymph nodes (the bean-shaped glands that play a key role in the immune system
• (M) Metastasis, or spread, to other parts of the body

Advanced liver cancer typically corresponds to higher TNM stages, indicating larger or multiple tumors, cancer that has spread to lymph nodes, or to distant organs elsewhere in the body.

Screening for liver cancer is crucial, especially for individuals at high risk, such as those with the chronic infection known as hepatitis B or C, cirrhosis (scarring of the liver), or a family history of the disease.

Regular screenings may involve blood tests to measure alpha-fetoprotein (AFP) levels, a protein produced in the liver that is often higher in people with liver cancer, and imaging tests like ultrasound, CT scans, or MRIs to visualize the liver.

Early detection through these screenings can be challenging, as symptoms often do not appear until the cancer is advanced, underscoring the importance of regular monitoring for at-risk individuals.

Assessing Liver Function

An assessment scale known as the Child-Pugh score is another crucial factor in determining the stage of liver cancer, particularly in assessing the liver’s function and the patient’s prognosis. This scoring system evaluates the severity of cirrhosis, which is a significant risk factor for liver cancer.

It takes into account several clinical and laboratory parameters, including:

• The level of bilirubin, the yellow pigment produced when red blood cells breakdown. Its levels indicate how effectively the liver can excrete bile, a fluid produced in the liver that aids in digestion.
• Albumin levels, reflecting the liver’s ability to process proteins.
• The prothrombin time, measuring the liver’s ability to produce blood clotting factors.
• The presence and severity of ascites, which is the accumulation of fluid in the abdomen due to liver failure.
• Hepatic encephalopathy which assessed the brain functions affected by liver disease.

The Child-Pugh score categorizes liver disease into classes:

• A (least severe)
• B (moderately severe)
• C (most severe).

This classification helps doctors determine the liver’s functional capacity and guide treatment decisions, as the liver’s ability to withstand certain treatments is variable.

For patients with advanced liver cancer, a higher Child-Pugh score might limit treatment options due to the liver’s reduced ability to recover from aggressive therapies, emphasizing the need for a balanced approach that considers both cancer treatment and liver function support.

RELATED: SurvivorNet Guide to Immunotherapy

Dr. Jaffe says there is reason for hope, even in advanced liver cancer.

“There are an increasing number of options. We may be able to convert a patient from having extensive disease to potentially curable disease. So that’s been a really exciting a really exciting aspect in the field,” she says.

Treatment Options

According to the National Comprehensive Cancer Network (NCCN), a non-profit alliance of major cancer centers through the country, surgery for liver cancer is not always possible because of the location of the tumors or because the liver is not healthy enough.

A tumor that cannot be removed with surgery is called unresectable.

NCCN guidelines recommend a liver transplant for patients who meet the criteria for one. After a liver transplant, you will undergo “surveillance” which means testing on a regular basis to watch out for tumor growth.

If a liver transplant is not an option, or to prevent the tumor from growing then your doctor may recommend other therapies that may help manage the disease and provide relief from symptoms.

“So we basically we now have some first line agents, and they have shown a significant survival benefit where people are living closer to the two year mark. And even in a subset of patients, like not an insignificant portion are actually, entering complete remission, which is really unheard of,” Dr. Jaffe says.

These treatment options may include:

• Chemotherapy: Uses of powerful medications to target and kill cancer cells. While it may not cure advanced liver cancer, it can help shrink tumors, alleviate symptoms, and improve quality of life.
• Targeted Therapy: These are drugs that work by targeting specific abnormalities within cancer cells, disrupting their growth and survival. An example of a targeted drug for advanced liver cancer is Cabometyx. It is a medication that has been successful in helping some liver cancer patients live longer by slowing down the growth of their tumors. It works by blocking special proteins known as enzymes hat help cancer cells grow.
• Immunotherapy: Immunotherapy harnesses the body’s immune system to help fight cancer. It can be used to treat some cases of advanced liver cancer by boosting the immune response against cancer cells. A combination of two drugs (Imfinzi and Imjudo) is an option for the treatment of advanced liver cancer. Ideal candidates for taking this combo include patients with inoperable liver cancer and positive genetic biomarkers for specific proteins.
• Radiation Therapy: Radiation therapy uses high-energy beams to target and destroy cancer cells. While it’s less commonly used for advanced liver cancer, it can be effective in relieving symptoms and shrinking tumors in certain situations.
• Clinical Trials: Participation in clinical trials may offer access to new treatments and therapies that are not yet widely available. These trials are essential for advancing our understanding and treatment of advanced liver cancer.

Advances in Treatment

In a recent phase 3 trial called Phase 3 CheckMate -9DW, researchers found that using a combination of two drugs, Opdivo and Yervoy, helped people with advanced HCC live longer compared to the usual treatments like Nexavar (sorafenib) or Lenvima (lenvatinib).

This combo extended the lives of patients with advanced liver. They were also found to be found safe and didn’t cause any new problems.

Specific details from the study aren’t yet available. The makers of the drug are conducting a full evaluation and will present their results at an upcoming medical conference sometime in the near future.

With the possibility of an effective new treatment on the horizon, this news presents an exciting update for advanced liver patients.

Liver Cancer Clinical Trials

The uptick in clinical trials research offers cancer patients with advanced disease new options, including new drugs and new combination therapies. Benjamin G. Neel, MD, PhD, director of NYU Langone’s Perlmutter Cancer Center, explains the importance of these clinical trials and what they can do to help patients.

“There is an incredible bevy of new therapies being developed,” Dr. Neel says. “If I were a cancer patient with a widely spread metastatic cancer, I would want to be on a clinical trial.”

Although some drugs tested in trials will fail, they increase the odds for a successful outcome.

RELATED: SurvivorNet Clinical Trail Finder

Coping With Late Stage Liver Disease

In addition to medical treatments, there are various ways to cope with the challenges of advanced liver cancer and maintain hope:

• Seek Support: Surround yourself with a strong support network of friends, family, and healthcare professionals who can provide emotional support and practical assistance throughout your journey.
• Educate Yourself: Knowledge is empowering. Take the time to learn about your diagnosis, treatment options, and available resources. Ask questions and advocate for yourself in your healthcare journey.
• Practice Self-Care: Taking care of yourself physically, mentally, and emotionally is crucial. Eat a balanced diet, engage in regular exercise if possible, and explore relaxation techniques such as meditation or yoga to help manage stress and anxiety.
• Find Joy in Everyday Moments: While living with advanced liver cancer can be challenging, it’s important to find moments of joy and gratitude in everyday life. Cherish time spent with loved ones, pursue hobbies and interests, and focus on the present moment.
• Stay Hopeful: Although the journey may be difficult, advances in medical research and treatment options offer hope for the future. Maintain a positive outlook and believe in the possibility of better outcomes and new opportunities.

A cancer diagnosis can bring on feelings of vulnerability, says Dr. William Breitbart, Chair of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center. 

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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