Liver Cancer Survivor Shares Why Patients Should Speak Up About Their Care

Paul thought he was finally moving forward after pancreatic cancer surgery. Instead, he received news that would send him back into another cancer journey.

In 2019, after two and a half years of testing and uncertainty, doctors discovered a tumor in his pancreas. He underwent a Whipple procedure, a major operation that removes the head of the pancreas along with other nearby structures.

When Paul returned for an appointment to discuss the results of his surgery, he expected to hear that his recovery was progressing well. Instead, doctors told him they had found a tumor in his liver.

“I got a complete curveball,” Paul recalled.

At first, doctors were unsure what the liver tumor was. A biopsy did not provide a definitive answer, leaving his medical team to determine the next steps. While some physicians considered monitoring the tumor, another doctor pushed for additional testing.

A second liver biopsy ultimately confirmed that Paul had hepatocellular carcinoma (HCC), the most common type of primary liver cancer, in January 2020.

The diagnosis was another major setback after an already difficult year.

“Thinking I've got through major surgery through 2019. I'm literally starting all over again in 2020,” he said.

His medical team recommended surgery to remove the tumor. But before Paul could undergo the procedure, the COVID-19 pandemic disrupted health care services across the United Kingdom, leaving him uncertain about when treatment would move forward.

His experience would teach him important lessons about navigating the health care system, communicating with doctors and making sure his questions were answered.

An Unexpected Diagnosis and a Delayed Surgery

Following his HCC diagnosis, Paul's doctors recommended a hepatectomy, a procedure to remove part of the liver.

However, the emergence of COVID-19 complicated the treatment plan. With many hospital services disrupted, Paul did not know when he would be able to undergo surgery.

In April 2020, he underwent a liver embolization intended to block blood flow to the tumor while his medical team worked to determine when the operation could take place.

By June, arrangements had been made for private hospitals to help the United Kingdom's National Health Service (NHS) carry out procedures. Paul's case was reviewed by a London cancer board, which considered patients who urgently needed surgery.

His operation was scheduled for June 8, 2020.

The circumstances surrounding his hospital stay added another layer of difficulty. Because of pandemic restrictions, his wife, Emma, could not accompany him into the hospital. Paul spent the evening alone before undergoing an eight- to nine-hour operation the following morning.

The tumor's location made the surgery more complicated than initially anticipated. Because a cluster of blood vessels surrounded the tumor, surgeons needed to remove a larger portion of his liver to navigate the area safely.

Ultimately, approximately two-thirds of his liver was removed.

His doctors were confident that the remaining liver tissue would regenerate, although they had carefully calculated whether enough liver would remain for that process to occur.

Paul's recovery included additional challenges. He developed ascites, a buildup of fluid in the abdomen, followed by a hospital-acquired infection that required another week of antibiotics.

After spending 20 days in the hospital without visitors, he was finally able to return home.

Despite the complications, Paul said his recovery was easier than his recovery from pancreatic surgery the previous year. Within about three months, he was beginning to feel like himself again.

He also recalled that his liver had regenerated within nine weeks.

Today, Paul says six years of follow-up scans have shown no recurrence of his liver cancer.

Why Patient Advocacy Became Essential

Paul's cancer journey reinforced the importance of taking an active role in his medical care.

His understanding of patient advocacy began long before his cancer diagnoses. Growing up with a rare blood condition, he spent considerable time in hospitals. He credits his mother with teaching him to speak up and make sure his medical needs were addressed.

That lesson stayed with him as he navigated multiple diagnoses, procedures and treatment decisions.

Paul explained that patients sometimes need to follow up repeatedly to ensure appointments are scheduled, results are communicated and important steps are not overlooked.

For him, advocating for himself means not simply waiting for the next phone call. It means contacting the hospital when he has not received an update, reviewing information before appointments and asking questions when something is unclear.

He also believes preparation is critical.

Before meeting with a physician, Paul and Emma review the information available to them and discuss what they want to ask. After appointments, they compare what they heard and identify details that one person may have missed.

The approach works because they process information differently. Emma tends to ask questions immediately, while Paul sometimes needs several days to absorb new information before additional questions come to mind.

Together, they help each other understand what the medical team has communicated and what they still need to clarify.

The Difference a Support Person Can Make

Having Emma involved in his care has been particularly valuable to Paul.

She provides another perspective during appointments, asks questions he may not think of in the moment and helps him process complicated information afterward.

During the COVID-19 pandemic, hospital restrictions often prevented her from accompanying him. Paul found that difficult because he missed having someone else listen to the conversation and help him remember the details.

He said the experience highlighted how challenging medical appointments can be when patients must absorb unfamiliar information on their own.

One of his consultants recognized the importance of including Emma in the process. Before Paul left certain appointments, the physician would check whether she understood what had been discussed.

For Paul, that approach helped ensure they were both prepared for the decisions ahead.

Patients who are comfortable doing so may consider bringing a trusted person to appointments. When that is not possible, writing down questions in advance and taking notes can help patients keep track of information. Patients can also ask their health care team about receiving written summaries or recording appointments when permitted.

The Questions Paul Wishes He Had Asked

Looking back, Paul wishes he had taken more time to understand his options before some of his earlier treatment decisions.

He specifically recalled feeling that he had been pushed toward surgery during his pancreatic cancer journey before he had all the information he wanted.

That experience influenced the advice he now gives other patients: Understand your diagnosis, ask about the available treatment options and make sure you are comfortable with the reasoning behind a recommended approach.

For people with HCC, treatment decisions depend on individual circumstances, including the extent of the cancer, liver function and overall health. Patients can ask their medical team which options may be appropriate for their situation and why a particular treatment is being recommended.

Paul also encourages patients to consider seeking a second opinion when they want another perspective on their diagnosis or treatment plan.

He believes patients should feel comfortable asking their doctors to explain unfamiliar terminology, discuss the potential benefits and risks of a procedure, and clarify whether other approaches are available.

Importantly, he encourages patients to speak up if they are uncomfortable or do not understand what comes next.

“Ask questions. Don't be scared to say no,” he said.

His advice is not about rejecting medical recommendations. Rather, it is about making sure patients understand their options and have an opportunity to participate in decisions about their care.

A Message for Others Facing Liver Cancer

After two cancer diagnoses, major surgeries and a recovery complicated by the pandemic, Paul has learned how important it is to feel informed and involved throughout the treatment process.

He encourages other patients to research their diagnosis using reliable sources, prepare for medical appointments and speak openly with their care teams about their concerns.

He also recognizes the value of support. Having Emma alongside him helped him navigate difficult conversations and process information that could otherwise have felt overwhelming.

For patients who are newly diagnosed, his experience serves as a reminder that it is reasonable to ask for clarification, take time to understand a recommendation and seek additional guidance when needed.

Paul's journey began with an unexpected tumor discovered while he was recovering from another cancer. It continued through diagnostic uncertainty, pandemic-related delays and an extensive operation.

Now, with six years of follow-up scans showing no recurrence of his liver cancer, he hopes others can learn from what he experienced.

His message is simple: Patients deserve to understand their care, and asking questions is an important part of making informed decisions.

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