UCLA brain tumor conference

Sat 04/19/08
We attended the annual UCLA Brain Tumor Conference yesterday and today. The brain tumor world is an amazing place, and bigger than I imagined. I’m guessing there were 150 patients and caregivers at the meeting. It's just weird to look around a large room and see scads of people with scars on their heads in various stages of treatment, of time since diagnosis, and of cognitive and physical ability. There were are men and women of all kinds - aside from certain generalities, it's clear that brain tumors have no regard for age, gender, ethnicity, or socio-economic status. Aside from being surreal, it was also comforting. You gather strength and support from those who are walking in your footsteps.
We learned some amazing facts about the number of new cancer cases each year – lung cancer 215,000 cases; prostate cancer 186,000; breast cancer 182,000, skin cancer 63,000; leukemia 44,000; and brain tumors 21,000 (American Cancer Society). That’s over 700,000 new cancer diagnoses from this list alone, about 3% of them brain tumors, and an unfathomable impact on families whose lives are changed forever.
One thing is clear: the professionals at UCLA are bright people, a team of doctors and staff at the pinnacle of their disciplines who work in demanding specialties. The meeting was hosted by Tim Cloughesy, who directs the neuro-oncology program at UCLA – he and his staff are cancer doctors who specialize in brain tumors. We heard presentations by a neuro-radiologist who interprets MRI and CT scans of brain tumors, a neurosurgeon who operates on brain tumors, a neuro-pathologist who analyzes and classifies brain tumor tissues, and a radiation oncologist who provides radiation therapy for brain tumors. Wow that’s a lot of specialists. Everyone did a reasonably good job of boiling down the medical lingo for people like us, but it was all pretty hard to digest at once. I felt like not only was I drinking from a fire hose, I could barely hold the hose. The neuro-oncologists on the team are like wagon masters who interact with the other specialists and guide their patients through the course of treatment. That’s Leia Nghiemphu for Susan. All of these people are caring, extremely hard-working, and totally committed to extending and improving life for their patients. It became clear to us that they’re completely unsatisfied with the current state of treatment. It’s the best we’ve got; but they’ll keep pushing for a cure. May God bless them.

We learned that on one level, a brain tumor is a brain tumor. It’s a bad thing nobody wants that makes you remember the date, time and place you were when you learned you or your loved one has it. I think the comparisons pretty much end there. There are soo many variables. In what region of the brain is it located? Did it originate there (primary) or did it spread from somewhere else (metastatic)? What grade is it, from I to IV (benign – malignant)? Is it operable? What is the patient’s age and overall health? What is the patient’s mental, emotional, and spiritual outlook? What are the patient’s financial and insurance resources? How solid is the patient’s family, friends, and support network? In what region of the country does the patient live? All of these factors will play out in each brain tumor patient’s outcome. Even two patients of the same age and gender with glioblastoma in the same region and same treatments may have different results. We’ve learned not to draw either elation or despair from another patient’s situation. It’s meaningless to transfer someone else’s conclusion to yours. Ultimately, we put our trust in God.

We also learned that for patients like Susan who have glioblastoma multiforme (GBM), there is a first-line treatment, all of which Susan had: a surgery to remove as much tumor as possible followed by radiation therapy combined with temodar chemotherapy, followed by monthly temodar and periodic MRIs. Temodar has been around since about 1998 and is effective for a number of people. Patients stay on this treatment mode unless the tumor surges back. If it resurges, the second-line treatment is a chemotherapy-drug combination of CPT-11 and Avastin. This combination has had good results in clinical trials and is expected to be a common alternative.

The difference in the room – who has accepted death? One valuable workshop on Saturday was called Understanding the Family Experience, hosted by two cancer support social workers. There were presentations from a physician diagnosed 2-3 years ago with glioblastoma and a family whose wife/mother diagnosed last year also with GBM. The format was interactive, allowing a lot of time for people in the room to air questions and share stories. The discussion that unfolded was quite emotional as patients and family members reckoned with the gravity of the disease. Some people were gripped by fear and despair, even breaking down emotionally while others around them offered comfort. Others were upbeat, hopeful, and encouraging. In that session I understood again how important it is to accept the reality of death for yourself and your loved ones. Since Jesus defeated death for us on the cross and secured eternal life for us in rising from the dead, the sting of death has been removed for the believer. Apart from Christ, the thought of death is crushing because death truly is the end and should be something to fear. It was no surprise that most of the hopeful ones in the room made it clear they were Christians. Our help is in the name of the Lord.