Multidisciplinary team treats brain lesions of unknown cause

In January 2021, Gayle Gullans was 14 years out from her last cancer treatment. The then-64-year-old retired English teacher had survived stage 3B breast cancer in 1999 and a recurrence – a single metastasis in her hip joint – in 2007.

But now she was very sick.

It started with a headache that she just couldn’t shake. It was worse in bright light. The pain seemed to touch every part of her head. And it was relentless. Then there were a couple weeks of fever and extreme fatigue. She called her longtime primary care doctor, Kathleen Kenny, MD. Suspecting meningitis, Dr. Kenny recommended Gullans go to the Emergency Department (ED) at Stanford.  Dr. Kenny called ahead and told Stanford ED that she felt a lumbar puncture was needed. The lumbar puncture did not show evidence of viral meningitis. But an MRI found lesions all over Gayle’s brain.

Given Gayle’s history, George Sledge, MD, her breast oncologist at Stanford first suspected cancer and referred her to Seema Nagpal, MD, a neuro-oncologist and Lawrence Recht, MD, also a neuro-oncologist. They debated the chances that the lesions were breast cancer metastases. Gullans experienced powerful dizzy spells, fatigue, loss of balance, debilitating headaches and was bed-ridden for two months by these symptoms.

Dr. Kenny continued to follow Gayle’s condition and referred her to rheumatologist Janice Lin, MD, and to infectious disease specialist Dora Ho, MD.  Both Drs. Lin and Ho ran tests to determine the cause of Gayle's symptoms. Eventually Dr. Ho ruled out any infectious cause of Gullans’ illness.

Dr. Recht prescribed a short course of decadron to address fatigue and headaches. Gayle's condition improved slightly. When decadron was discontinued after a few weeks, her condition worsened.

She was referred back to Stanford for more tests.

When additional lumbar punctures found no sign of cancer, Gayle's team ordered a brain biopsy, to definitively rule out brain cancer. It was performed by Melanie Hayden Gephart, MD, neurosurgeon and co-director of the Brain Tumor Center.

Gayle’s interaction with Dr. Hayden Gephart was brief, but it made a mark.

“When I woke up from brain surgery, I was told that Dr. Gephart had French braided my hair herself on the side of my head where she took the biopsy,” Gayle said, “so they wouldn’t have to shave off so much of my hair.”

As Gayle awaited the biopsy results, she was daunted. When it came to cancer, she felt she had no fight left in her. “I told my family I didn’t know if I could do chemotherapy again. It’s just so awful. I couldn’t go through that again.”

But the brain biopsy ruled out cancer. Instead, it uncovered chronic lymphocytic meningoencephalitis, a rare meningitis that can have either infectious or non-infectious causes, including a number of autoimmune triggers.

While Gayle was relieved she wouldn’t be fighting cancer for a third time, she faced a steep uphill battle to overcome this rare autoimmune disorder. It would take a multidisciplinary team of clinicians working together to get her there.

Dr. Lin and neuro-immunologist May Han, MD, joined forces to explore autoimmune conditions as the cause. Drs. Nagpal, Sledge and Recht continued to monitor Gullans for any signs that the lesions were in fact cancerous.

Dr. Lin put Gayle on high-dose prednisone to bring down the inflammation in her brain.

On prednisone, Gayle got immediate relief from some of her symptoms. As she improved, her care team continued to investigate her condition and monitor her progress. During this time, her team ruled out giant cell arteritis, polymyalgia rheumatica and other autoimmune causes of her condition.

“When a case becomes really complex, the answer is not going to be written in the textbooks,” Dr. Han said. “With a number of different specialists, we all see the same thing from a slightly different angle.”

With the goal of slowly tapering Gayle off steroids completely, Dr. Lin brought her in for frequent follow-ups. Gayle’s subsiding symptoms suggested that the inflammation was waning. MRIs confirmed it.

“I loop the neurologist and neuro-oncologist in to weigh in on the imaging and make sure that the lesions are stable and that they aren’t a recurring malignancy,” Dr. Lin said.

Gradually lowering the prednisone dose, Dr. Lin watched Gayle closely with monthly visits and connected with the rest of Gayle’s team in between.

“I told Gayle, as we came down on the prednisone, ‘I don’t know if you’re going to have another episode, but whatever happens, we are in this together,’” Dr. Lin recalls.

In between medical appointments, Gayle was empowered to play a role in her own self-care through the Stanford Center for Integrative Medicine, where she was referred by Han.

“Patients can feel helpless when you tell them that you don’t know what’s going on with them,” Dr. Han said. “I tell them the truth, but I also give them something that they can take charge of – their everyday living.”

Gayle learned how diet, exercise and supplements may complement her treatment and give her tools to cope with a debilitating, chronic illness. Chair yoga classes through Stanford’s Supportive Care Program have helped her regain strength and manage the stress of living with an unknown condition.

“I can’t describe how much those classes have helped me,” Gayle said. “They gave me hope that there was going to be an end to all of this.”

Though the cause of her condition remains unknown, Gayle is off steroids and continues to improve. Her symptoms haven’t gone away, but they are trending in the right direction. Her care team has gotten necessarily smaller. With Dr. Lin at the helm, Gayle is still watched by rheumatology, oncology and neuro-oncology.

“It has meant so much to have Dr. Lin stick by me and coordinate my care through all of this. She watches over me like a mother hen,” Gayle said. “The whole team at Stanford not only takes care of my medical needs, but also cares about who I am as a human being. I have experienced that over and over at Stanford.”