Living with Cancer
- Corey Rhodes, 32, is keeping himself as active as possible while living with an advanced rare liver cancer. Now that his tumors have ‘stabilized,’ he is helping comfort others affected by the disease while rallying his community to assist with cancer research efforts.
- The type of liver cancer Rhodes was diagnosed with, fibrolamellar carcinoma (FLC), tends to affect younger people in their teens to under 40, with the diagnosis odds being around one in five million in the United States, the National Cancer Institute says.
- NCI adds that fibrolamellar carcinoma typically doesn’t present symptoms early on, but once the tumor or tumors get larger, these are issues that may arise to signal something is wrong, such as pain in the abdomen, back or shoulder, as Rhodes experienced.
- If you are diagnosed with advanced liver cancer, know that 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. Participation in clinical trials may offer access to new treatments and therapies that are not yet widely available. In addition to many people experiencing tremendous, life-saving results, clinical trials are essential for advancing our understanding and treatment of advanced liver cancer
“I don’t let it run my life,” Rhodes said in an interview with Pennsylvania site Triblive.com. “I go about my business and try not to really think about that.”
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Rhodes’ Cancer Story
The type of liver cancer Rhodes was diagnosed with, fibrolamellar carcinoma (FLC), tends to affect younger people in their teens to under 40, with the diagnosis odds being around one in five million in the United States, the National Cancer Institute says.“They told me it was almost like a lottery ticket that randomly occurs,” Rhodes recalled of his diagnosis, which came after a scan showing his liver tumor. “They said it was the size of a deflated basketball.”
Initially thought to have celiac disease, his symptoms consisted of heartburn and shoulder pain. Cut to Rhodes undergoing an eight-hour surgery to remove the tumor back in October 2021. But unfortunately, that wasn’t the end of it. The disease returned the following February.
Recovery, pain management and more — What to expect after surgery for liver cancer
“That was probably a worse doctor’s appointment than finding out what I had to begin with,” Rhodes expressed.
The second time around it had spread to his bones. He went through chemotherapy, radiation, immunotherapy and even wound up in hospice care with his weight dropping significantly as his health rapidly declined.
Determined and putting up a fight, Rhodes started to come back. He gained 30 pounds and was able to manage the disease with a lower dose of chemotherapy infused every two weeks, which led to the positive news of his now stable tumors. He is working part time and realizes he is fortunate to have health insurance covering his treatments.
“A lot of other people have it a lot worse than I do. I felt I needed to give back to other people who were not that lucky.”
“We’re all very proud of the way he has turned this around to not be about him but about helping other people,” said Rhodes’ mother Gail of his philanthropic efforts as her son organizes another event for January. “If this can help another patient in any way, that’s what we’re striving for.”
Symptoms of Fibrolamellar Carcinoma
NCI explains that fibrolamellar carcinoma typically doesn’t present symptoms early on, but once the tumor or tumors get larger, these are issues that may arise to signal something is wrong:
- Pain in the abdomen, back or shoulder, as Rhodes experienced
- Nausea and vomiting
- Appetite and weight loss
- Malaise/lethargy
- Jaundice, which is yellowing of the skin
Treatment Options with Liver Cancer
If you are diagnosed with advanced liver cancer, know that 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. 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.
Liver Cancer: Risk Factors, screening, and how it’s diagnosed
“So we basically now have some first line agents, and they have shown a significant survival benefit where people are living closer to the two year mark,” Dr. Ariel Jaffe, a board certified internist, gastroenterologist, hepatologist, and assistant professor at Yale University Medicine tells SurvivorNet. “And even in a subset of patients, like not an insignificant portion are actually, entering complete remission, which is really unheard of.”
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 combintaion 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 (more on clinical trials below).
How to Find Help After a Rare Cancer Diagnosis
Tens of thousands of people like Rhodes are diagnosed with rare types of cancer every year.
People facing an uncommon diagnosis may find it difficult to find a doctor who specializes in their illness. SurvivorNet experts have specific guidance on ways that rare cancer patients can find helpful resources and take the initiative to get the help they need.
Here are some ways to find help:
Clinical trials: Many SurvivorNet experts say that once they have exhausted all other options for treating their patient’s cancer, or if they have a rare cancer that could benefit from a trial, they will recommend looking into clinical trials. Unfortunately, the clinical trial that Rhodes participated in was unsuccessful, but many people have had tremendous, even life-saving, results.
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.”
Clinical Trials can be life-saving for some
Although some drugs tested in trials will fail, they increase the odds for a successful outcome. How can you find active clinical trials that may be right for you? Check out clinicaltrials.gov.
Comprehensive care centers & academic centers: For many cancer patients, community oncology can be a great treatment resource. However, people with rare cancer might require specialized evaluation. Most of the time, the most effective place to find a specialist is at academic centers and comprehensive care centers. Across the United States, there are only about 50 accredited comprehensive cancer centers.
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