Becoming Your Own Advocate When Cancer Has No Easy Answers

For Eli, the hardest part of cancer has not necessarily been surgery or treatment.

It has been the uncertainty.

Not knowing why the cancer continued to spread. Not knowing why it kept returning. Not knowing when the experience might finally be over.

“Cancer can make it feel like an unsolvable riddle,” he says.

It is a feeling Eli has lived with for much of his life. He experienced leukemia as a child, later faced precancerous polyps, and was eventually diagnosed with metastatic pheochromocytoma, a rare cancer that began in the adrenal gland and spread throughout his body.

Over time, Eli learned that living with uncertainty required more than simply waiting for answers. He needed to become an active participant in finding them.

Becoming a partner in your own care

To Eli, self-advocacy does not mean having all the answers or trying to replace the expertise of a doctor.

It means paying attention to what is happening in your body and communicating it as clearly as possible.

“If there are symptoms that look a little bit off, write them down. Keep track of them,” he says.

That might mean documenting when a symptom began, how it has changed, or whether several seemingly unrelated changes appeared around the same time. These details can give a healthcare team a clearer picture of what is happening between appointments.

Doctors are doing their best, Eli explains, but they may also be caring for hundreds of patients. A patient can help by bringing forward the information that only they experience day to day.

“Be their partner in treating your cancer through this journey,” he says. “You’re going to have to get great at describing your symptoms, timelines and things that you’ve noticed are off or odd.”

For Eli, advocacy became less about challenging his doctors and more about helping them see the complete picture.

Following the thread that remained

Eli’s diagnosis falls within an extremely rare category of cancer. Even within that category, his particular case is unusual.

Only a small number of researchers focus on the disease, and even after Eli gained access to experienced specialists, important questions remained unanswered. He describes his condition as a “black box mystery.”

Several rounds of genetic testing did not identify the mutations doctors would normally expect to find.

But Eli noticed something in the results.

The results included variants of uncertain significance, sometimes called VUS. These are genetic changes whose meaning is not yet fully understood. Because their relevance is uncertain and there may be no established treatment connected to them, they do not always lead to a clear next step.

To Eli, however, one of those variants represented the only thread he had left.

So he decided to pull on it.

Drawing on his background in biochemistry, Eli reviewed the information more closely. His experience gave him the tools to investigate the results in unusual depth, but he emphasizes that self-advocacy does not require scientific expertise. For most people, it can be as simple as tracking symptoms, asking questions and speaking up when something does not feel right.

In Eli’s case, that deeper investigation led him to a possible genetic explanation that differed from the mutations clinicians had previously been looking for. He later connected with a doctor who understood the possibility and a geneticist willing to investigate it further.

The work is still ongoing, and the findings have not yet provided a definitive resolution. But for the first time, there may be a clearer direction to explore.

Advocacy does not mean doing everything alone

Eli’s experience also shows that advocating for yourself does not mean carrying the entire burden by yourself.

During one particularly difficult recovery, he was living alone without family nearby. Fourteen friends coordinated their schedules and took turns flying out to care for him.

Some of them had never met before.

As each person left, they would update the next friend on how Eli was doing, what the doctors had said and what still needed to be done. Eli describes it as passing a baton during a marathon, with each person helping him through the next stage of recovery.

That support was not separate from his advocacy. It was part of it.

Knowing when to ask questions matters. So does knowing when to ask for help.

Self-advocacy can involve speaking up during an appointment, keeping track of symptoms or seeking another perspective. It can also mean allowing friends, family members and professionals to stand beside you when the experience becomes too much to navigate alone.

Turning uncertainty into possibility

Eli’s search may ultimately reach beyond his own care.

People with rare cancers can sometimes complete genetic testing only to remain categorized as medical mysteries. Eli hopes that what he and his clinical team are investigating could eventually create another avenue for patients whose results do not fit the expected pattern.

“This could unlock hope for a lot of other patients,” he says.

That possibility has changed how Eli looks back on his experience.

He would never have expected to feel grateful for a diagnosis that once left him feeling shattered and lost. But the journey shaped who he became, pushed him to search for answers and created the possibility that his experience could one day help someone else.

“People are more resilient than they know,” he says. “You’d be surprised what you could live through.”

Eli’s story is an extraordinary example of self-advocacy, but its central lesson is simple.

Pay attention. Keep track. Ask questions. Share what you notice. Seek support. And work with the people around you to find the next step, even when the full answer is not yet clear.