An Intersection for Concerted Care: Stanford Brain Tumor Center Debuts
A few hours after Marjorie Paulsen learned that a tumor was growing in her brain, she told her husband she didn't want to go to sleep that night. "I'm afraid I won't wake up," she said.
For a couple of years before her diagnosis, Paulsen, who was otherwise in good health, had been bothered by a weird and random phenomenon. "My hand would rise up in the air and move on its own," she said, and recalling a popular television show, "like the hand on 'The Addams Family. It would last for a few seconds and then get back to normal."
Paulsen was a flight attendant for United Airlines. When that symptom struck while she did her job, perhaps as she served coffee, the unpredictable movement was more alarming. She thought it was probably a nerve in her neck acting up. The odd movements happened more and more often. Then another symptom emerged. Her left leg began to tingle "like I'd sat on it funny," Paulsen said. The tingling lasted for hours until finally she called a doctor. He advised her to get help at her nearest emergency room.
The nurse coordinator said, 'We have a plan,' and she was so positive I thought, 'Okay, I'll go along with that.'
As the doctor there looked at her test results, Paulsen could see the look on his face and she turned quickly to her husband. "Jerry, I think we're in for something."
A Place to turn
Eight years later, Paulsen, now a patient at the newly-minted Stanford Brain Tumor Center, is a happy great-grandmother enjoying a happy retirement with her husband. This February, Griff Harsh, MD, director of the Center, took out a tumor in her brain that had regrown since its first removal in 2003.
The Center frames the hospital's considerable corps of top-notch brain specialists into a treatment team driven by expertise, experience and compassion. The Center will not have its own building; it does reflect a collaboration-shaped structure and process designed to streamline diagnosis and treatment. The goal, Harsh said, "is to give patients the highest quality of care, delivered with a matching level of efficiency."
"Using the word center implies a higher level of organization than just a few doctors running around," said Stanford neurosurgeon Steven D. Chang, MD, Director of Stanford's Neuromolecular Innovation Program, and a Center team physician. "Somewhere else you can patch together a surgeon, a radiation oncologist, etc., but are you going to get them in a room together to talk about you? Our patients can feel that not only are they being seen in a world-class medical center, but that they're getting the expertise of all our physicians."
That expertise translates into the most advanced care available. "If something cutting edge is going to be done, it's likely to be done here at Stanford," said Lawrence Recht, MD, Director of Adult Neuro-Oncology, one of Paulsen's physicians and part of the new Stanford Brain Tumor Center. "We have cut a wide swath for the Center, with virtually every possible discipline and specialty represented here."
It makes a difference if you are treated at a place where they know what they're doing.
Tumors that originate in the brain are still rare, compared to many other health conditions, he said, "so it makes a difference if you are treated at a place where they know what they're doing. We have a large body of accumulated experience and the coordinated experience of many specialists. That can make a big difference in results for patients."
More than one view
At every step of Paulsen's way, her care included a neuro-oncologist, neuroradiologist, neuropathologist, neurosurgeon and a seizure specialist, each contributing special knowledge then blended to coordinate her treatment. "From day one, the team care at Stanford has been so wonderful," Paulsen said. "The level of care has been off the chart."
What Paulsen noticed especially was a positive and supportive attitude. "I'll never forget the day I found out my tumor was malignant," she said. "That set me back a bit, but Lynn Adler, the nurse coordinator said, 'We have a plan,' and she was so positive I thought, 'Okay, I'll go along with that.'"
- Unlike the lungs or the abdomen, the brain is a closed box, so a tumor interferes with brain function by its sheer presence. It can also become part of the brain's tissue and disrupt function directly.
- There are more than 120 types of brain tumor.
- About one in three brain tumors develop because cancer has appeared in another part of the body, most often the lung or breast.
- About one in three brain tumors are independent, originating first in the brain. One in three of those primary tumors are malignant.
- A seizure can be the first sign of a tumor.
- Symptoms reflect the location of a tumor. If a tumor is near the eyes, then vision will be affected; tumors near the brain stem, at the base of the skull, can cause trouble with speech. A tumor near the pituitary gland can disrupt the appetite.
- Brain tumors can be large and slow-growing or small and fast-growing or vice versa.
- Tumors can vary in consistency from tough and gristly to soft and soupy.
At Stanford, in addition to joint consultations between physicians, an interdisciplinary brain tumor board meets weekly to review and discuss patient treatment plans. More than 20 specialist physicians and nurses in neuropathology, neuroradiology, neurosurgery, neurology and neuro-oncologiy usually attend.
Within the Stanford Brain Tumor Center, Recht said, "We have a very strong group identity. We get along and we meet a lot. We really work well together; we respect each other's expertise and we usually make our decisions by consensus."
Another element in the Center's care will be a group of nurses with special certification in neurological care and social workers experienced in the needs particular to tumor patients and their families, with access to resources in neuropsychology, rehabilitation and counseling.
Seeing the whole picture
"We are very hands-on with our patients," said neurosurgeon Gordon Li, MD, who recently joined the team. "Patients might not be used to doctors actively calling them, making sure everything is going smoothly and wanting to know what's going on. We think it's our job to take care of not just the medical issues, but the person and their family, too."
"We have a heavy focus on counseling for patients. We really want to hear what they feel and we take the time to do that thoroughly," said Seema Nagpal, MD, another new member of the Brain Tumor Center team. "We know a brain tumor is a tough diagnosis to deal with. A first visit to us includes time with a doctor, time with our nurses and sometimes with social work and other support services."
The Center will also connect patients directly with clinical trials and research at Stanford, where investigations include brain cancer's cellular biology, cell markers for early tumor detection and genomic structure.
Harsh, also director of Adult Surgical Neuro-oncology at Stanford, believes that medical research and clinical care at Stanford is endowed with a "tremendous and continuous drive for excellence." He has practiced neurosurgery for more than 25 years and seen many advances in care. Like his colleagues at the Brain Tumor Center, Harsh has learned and applied innovations in minimally invasive brain tumor surgery and imaging technology. "As a team," he said, "we build on each other's expertise to improve what we can do for our patients. We are mutually enhancing in our ways of approach and thought."
That new image technology he can now employ is as much about combining the available in new ways as about inventing new devices. Stanford's Josef Parvizi, MD, PhD, another member of the Brain Tumor Center group, is a neurologist focused on human brain mapping. He has been part of Paulsen's care team.
We think it's our job to take care of not just the medical issues, but the person and their family, too.
Parvizi and his research team combine information from functional MR, and electrophysiological recordings produced with grids and strips of electrodes overlying the tumor area. The team electrically stimulates the cortex adjacent to the tumor to map the brain's complex ordering of human behavior and perception. That map enables surgeons to operate within the curved, compact canyons of the brain knowing far more specifically what can be taken and what cannot. With a multidisciplinary team combining standard tools to expand the view of brain activity, "We have gone beyond the conventional," Parvizi said.
The Center's team also shares sensitivity to that fear that comes with any threat to the brain. "Brain cancer is one of the most difficult medical conditions to treat," said Li. "The brain is a lot more mysterious than the heart or lungs. It's who we are and what defines us. That raises the impact of a brain tumor diagnosis."
After her 2003 surgery, Paulsen was treated with a drug that disrupts the DNA of tumor cells, stopping their growth. She was checked for tumor activity every three months, and then, as she tested clear, every six months. In 2008, one of her neuroradiologists thought he saw something and she was back to every three months as her team monitored the tumor closely. Finally, this winter, Paulsen had a seizure and it was again time for surgery.
"When I had my first surgery, they told me that my type of tumor had a 50/50 chance of growing back," Paulsen said, "so when it did come back, I didn't go 'This is it!' Dr. Recht said, 'We'll deal with it' and Dr. Harsh said, 'We'll go get it again,' like taking a wart off my fingers. It was all done with such 'We can do this' that I thought, 'Yes, we can!'"
Paulsen was struck by how much had changed since her first surgery. "My second was like drive-through. I was in and out in one day. I was doing so well they couldn't see any reason for me to stay in the hospital, so off I went!"
She'll remain in close contact with her team at the Brain Tumor Center, although "they told me that Dr. Harsh had done his job very well. Now, I'm on what they call 'watchful waiting,'" she said.
She and her husband like to travel, especially to visit the grandchildren and great-grandchild. She doesn't think much about the tumor. "I try to be a very positive person. When I go for an MRI, I don't think, 'Is this the one where it shows that the tumor's growing back?' I don't spend a lot of time thinking about it. I have the MRIs and in between I live my life!"