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A surprise brain tumor diagnosis: Rachel's pilocytic astrocytoma journey 

May 2, 2022 - By Marcia Frellick

Rachel had no symptoms or indication of a brain tumor, and received a surprise diagnosis after a brain imaging scan for an unrelated condition. 

Photo Courtesy of Rachel Soto

Four years ago, Rachel Soto of San Diego was 34 and a mother of two young children when an MRI revealed something she never expected -- a mass in her brain, the size of a grape, pushing up against her brainstem.

She would eventually find out she had a pilocytic astrocytoma, a typically slow-growing tumor with a favorable behavior pattern, which is more commonly seen in young children than people her age.

But initially she heard only the word “mass” and felt disbelief and confusion.  She had no symptoms -- no headaches, no cognitive issues, no motor skill impairment. She also had no family history of brain tumors.

The brain and spine MRI had been ordered by her primary care physician for a separate, unrelated condition.

Soto, always proactive with her health, started looking for a neurosurgeon with expertise in her particular kind of tumor.

Her best friend, a nurse who worked at a large East Coast health system, polled colleagues in neurosurgery there for a recommendation. The answer came quickly: Dr. Michael Lim.  

Soto started consultations with Dr. Lim and in September, 2020 he joined Stanford’s team as Chair of the Department of Neurosurgery, specializing in brain tumors and trigeminal neuralgia.

Waiting and watching

Soto said Dr. Lim put her mind at ease from the beginning, explaining that the tumor’s size and shape were stable and he would advise monitoring rather than surgery. 

“He said ‘if you were my sister, this is what I would tell you to do,’ ” Soto said.

Soto didn’t want to jump into surgery if she didn’t have to, primarily because that would interrupt the lives of her now three children and put a “speed bump” in the active life she cherished. She loved salsa dancing with her husband and being an active mom— present for homework help every night and fully participating in their activities.

Dr. Lim described the sensitive location of the tumor, which was wrapping behind and into the brainstem in between cranial nerves that affect speech and swallowing. The tumor was also near nerves that affect eye movement and potentially hearing and facial movement.

“Given that it was in a more delicate position, the risk-benefit ratio favored observation,” he said.

In June of 2021, however, a periodic scan showed the speed of tumor growth was increasing and Dr. Lim recommended removal.

“When we address tumors,” he said, “there are two central principles: quantity of life and quality of life. When the tumor started growing at a more rapid rate, both were at risk.”

Soto said she felt a rush of fear but she was also confident that it was the right decision.

“I trusted him. I felt comfortable. He understood me and what was important to me and he understood what was important to us as a family,” she said. “I felt scared, but if I was going to be scared, these are the people I want to be scared with.”

Rachel, postsurgery

Undergoing surgery at Stanford

The surgery was quite intricate and the surgical team was able to remove the majority of the tumor – all that could be removed without compromising brainstem function.

Soto said she felt no pain afterward, just tiredness and a bit of numbness at the surgery site.

“I have felt more pain at the dentist’s office,” she said.

Nine months later, she remains symptom free and grateful. Grateful for the original primary care doctor who ran what seemed to Soto at the time to be an excessive number of tests. Grateful for the skill of Dr. Lim and his team. Grateful for her faith and both her prayer group and support group that help her with her emotional and spiritual well-being. And grateful that family life transitioned smoothly back to normal.

She said she has been particularly impressed with the personal attention in the years before and after  the surgery, noting that Dr. Lim was fully informed on all aspects of her care, such as her progress in occupational therapy and her medication regimen, so when her husband called for an update, Dr. Lim could give the complete picture.

Dr. Lim says he expects Soto to live a long, full life and he will continue to monitor the remaining portion of the tumor.

He says, “it’s an honor to take care of patients. It’s a real privilege. And it’s always important to consider not only the quantity, but also the quality of life on an individual-patient basis.”  

A new outlook

Soto resumed her active home life and her job at a big tech company, but she also said the diagnosis has changed her.

“I take more enjoyment in everyday life and I don’t let things get to me as I did before,” she said.

She said she doesn’t dwell on the remnants of the tumor or contemplate her health too far down the road

“I just keep on top of it,” she said.  I just keep communicating with my doctors.”

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