Living in the moment: Susan Parrott
As someone affected by chronic liver disease, Susan Parrott knows how it feels to live in uncertainty. But every few months, the anxiety and doubt that shadow her life fade when Mayo Clinic Laboratories test results confirm her condition is in check and she can continue living life on her own terms.
Every three months, Susan Parrott, who has liver cirrhosis, breathes a sigh of relief. Gone is the weight associated with having a diseased liver at risk for becoming cancerous, and she feels grateful for having more time, leaning fully into each moment as it comes.
The respite from an undercurrent of worry springs from laboratory test results confirming Susan’s disease course has not changed; her liver has not developed a cancerous lesion and is still functioning normally despite its fragile state.
“It’s like dancing in the streets for another three months,” says Susan, who lives near Ft. Myers, Florida, and is a patient at Mayo Clinic’s Jacksonville campus. “It’s like, I’m OK for a while, I’m really good, I can live my life and I can be back to normal. I don’t have to think about it for a while.”
For more than 25 years — since learning she was positive for hepatitis C in 1996 following an attempt to donate blood for her grandson — Susan’s life has followed a regular cadence of doctors’ visits and laboratory testing. Those test results have not always been favorable, but they provide a layer of detail on her liver’s health and direction on the next step forward.
“Honest to goodness, if it wasn’t for the lab results, they wouldn’t know what to do,” Sue says. “I am so thankful for the labs. When you go to Mayo Clinic it’s an integrated team of doctors who are interested in how things are working together in your body, how your health is overall, and it’s just a holistic, really a patient-centered way.”
Early on in her medical journey the laboratory tests Sue received informed her care team how well her body was responding to the hepatitis C treatments. In 2019, lab testing showed the infection was cleared by the antiviral therapy Epclusa. But years of sustained damage had caused cirrhosis. After that diagnosis, Sue’s testing focused on disease progression and monitoring for cancer.
“When you have continuous injury from alcohol or hepatitis, the cells in the liver try to regenerate and replace the damaged cells, says Sue’s Mayo Clinic hepatologist Barry Rosser Jr., M.D. “The liver does this by laying down a small amount of scar tissue, like scaffolding, so the regenerating liver cells can form the normal liver structure, after which other cells remove the scar tissue if there isn't continuing damage. But over the years, a chronic disease like hepatitis overwhelms this process and scar tissue builds up, eventually resulting in cirrhosis.”
Each liver cell replication poses a risk for a mutation to develop and over years of multiple courses of replication during chronic hepatitis, some of those mutations can result in liver cancer formation, explains Dr. Rosser.
After learning of the cirrhosis and the potential need for liver transplantation, Sue began researching options for transplant centers in her areas. Her search led her to Mayo Clinic in Jacksonville, which has performed more than 4,000 adult liver transplants since the transplant program began in 1998.
At the time, Sue felt generally well and was not experiencing pain or other major symptoms. One exception was exhibiting a common feature of cirrhosis: enlarged esophageal veins. This occurs when blood, prevented from moving normally through the scarred liver, becomes backed up and is forced into new pathways.
But there had been no prior evidence of liver cancer.
At her first Mayo appointment in January 2020, however, MRI imaging revealed a small, 1.6-centimeter lesion.
“In a normal liver, up to two-thirds of the liver can be removed and the cancer taken out without high risk of liver failure,” Dr. Rosser says. “But with her cirrhosis and enlarged veins suggesting more advanced liver disease, the risk of liver failure complicating surgical attempt at tumor removal and potential need for an emergent transplant was much higher. We wanted to wait and assess all options including transplant before moving forward.”
A biopsy was performed using interventional radiology, but testing came back inconclusive. So Sue’s care team started to track the tumor using both laboratory testing, which measured the tumor marker alpha-fetoprotein (AFP), and MRI scans.
“When you have a nondiagnostic liver lesion, another parameter that tells you that you are dealing with a cancer is that it grows in size over time,” Dr. Rosser says.
By the fall of 2020, the tumor had reached 2 centimeters and Sue’s team faced a decision: remove the tumor and risk liver failure or activate Sue on the liver transplant list and treat the tumor nonsurgically.
Because Sue was in very good health overall with no major symptoms, and because she had not developed additional lesions, her team decided to ablate the tumor. “So we treated the tumor and then had the backup of being able to consider liver transplant if there were other issues,” Dr. Rosser says. “They cauterized the tumor, and said we are going to monitor it for recurrence.”
For Susan, this means continuing to receive regular MRI scans and AFP testing. Alpha-fetoprotein, explains Alicia Algeciras-Schimnich, Ph.D., professor of laboratory medicine and pathology at Mayo Clinic, is a protein produced by several types of tumors, including hepatocellular carcinoma, which is the most common type of liver cancer.
“After complete removal of the tumor, AFP concentrations typically decrease and normalize,” Dr. Algeciras-Schimnich says. “Failure of the AFP to normalize implies residual malignancy or severe liver damage.”
To date, Sue’s AFP results have remained stable. AFP testing is not the only laboratory measure Susan’s care team used to monitor her condition.
“In stable cirrhosis patients, we monitor the CBC (complete blood count), electrolyte profile and creatinine, prothrombin INR, liver profile (including bilirubin), and tumor markers,” Dr. Rosser says.
While Sue will continue receiving follow-up testing for the next several years, having reached the two-year benchmark means her risk of developing another tumor has decreased significantly, Dr. Rosser says.
She also continues to be monitored on the liver transplant waiting list and should the tumor recur, or additional tumors develop, can receive a liver transplant if needed.
“If you catch liver cancer early, you can have a good outcome, even without requiring transplant,” Dr. Rosser says. “If you wait too long to treat or wait too long for someone to refer a patient to a transplant program, then the tumor gets larger, or spreads within or beyond the liver, and options for treatment including transplant are limited and prognosis may be poor.”
Sue appreciates how her care team, guided by accurate laboratory testing, has individualized her treatment and testing journey to allow her to continue living on her own terms.
“I don’t think I’ve been prevented from doing anything, but it certainly makes you look at your mortality,” Susan says. “It makes you appreciate every day as it comes. And it makes you more aware of your actions every day — to be sure that you are living in the moment and telling the people you love that you love them and doing things that you really want to do and just have never done because you were too busy. To make sure that you’re spending that quality time with people and being in the moment, because there might not be another moment.”
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