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The information presented below is the opinion of Matthew F. and does not necessarily reflect the opinion of the Musella Foundation!
Surviving a Glioblastoma (gbm) Brain Tumor Diagnosis
* Second Opinions *
Treatment Centers Of Excellence
The single most challenging problem is the nihilism, which most physicians have-they believe a patient with a gbm is dead. Only with the use of the newer more scientific approaches will there be progress. We have too many survivors to ever adopt this give up before you start the fight philosophy.
We've got a lot of new weapons and we really believe that the slate is blank - that you can make a path that doesn't necessarily have to follow the old, traditional land mine of 'dead in a year.' And we meld that to hope.
The biggest problem is that people make the assumption that if you have a lethal
disease, you're going to die no matter what you do. So they act accordingly and
fulfill their own prophecy.
If instead you try newer, more creative ventures and if you've got good ideas,
you'll keep chipping away at the problem. You can't just sit around and hold
somebody's hand and sing Kumbaya.
---- Duke Univ. Neuro-Oncologist: Dr. Henry Freidman, MD
(Henry sees about 100 new pediatric and 600 new adult patients each year--400 of which are adults with gbm.)
There are many treatment centers of excellence. While it can be a difficult decision knowing which
center is the best for you, it is more important to get to a center than knowing which one is the best.
In some cases, location may be more of a factor in making a decision. Some patients, may choose
to stay in their region so they can benefit from continued support & interaction of friends and family.
Others may choose to fly to a center across the nation, as I did.
Even at the very worst center of excellence, you are going to get better more specialized care than at
most of your general care facilities (like your local hospital) that attempt to offer you brain tumor treatment(s).
Brain tumor treatment could be compared to major amusement parks like Disney World. Those roller-coasters are too expensive to build one in every little town. The tools and equipment to effectively treat brain tumors are also expensive. As such, it is more economical to bring patients to a center, than to try and have such specialized equipment at every general care hospital. Most general care facilities simply could not justify it based on the small number of brain tumor patients they treat annually.
Moreover, these centers of excellence work as a team in treating the patient. You will be seen by
neuro-specialists in surgery, oncology, radiology, pathology, psychology, etc.
"I think there's no doubt the team approach works better, the patients do better--they live longer. Their best chances of a cure come from that team approach, and at some point every [patient] should have a team of compassionate doctors taking care of them for this kind of a brain tumor problem. It's a big, huge multidisciplinary problem, and no one specialty has dominion over it."
- ---- Dr. Allan J. Hamilton, MD, FACS
Chief Director of Neurosurgery, Univ. of Arizona
If I were personally in need of treatment, these are the centers I would consider first. They are
listed alphabetically: (You should of course, discuss all treatment decisions with your physician).
- "A Premier Institute for Neurological Surgery"
CEDARS-SINAI -- Maxine Dunitz Neurosurgical Institute (Los Angeles, California) Located in Los Angeles, Cedars features one of the premier neuro-surgeons in the world: Dr Keith Black. Dr. Black has been featured in a slew of magazines, including Time, and has been featured on PBS numerous times. Both an outstanding clinician and a force to be reckoned with in the research laboratory, Dr. Black may best be known for his work in disrupting the blood brain barrier and the development of a brain tumor vaccine. Furthermore, he is a compassionate, gentle physician.
- "At Duke There Is Hope"
DUKE UNIVERSITY (Duke, North Carolina)
Their motto: "At Duke, There is Hope." This may be best attributed to having Dr. Henry Friedman, a neuro-oncologist on staff there. Henry an outstanding clinician, known for his exceptional bedside manner. Don't be surprised if you see Henry doing rounds in jeans, he feels that white coats only distance physicians from their patients. It is not uncommon for Henry to phone patients as late as 10pm. He is a credit to the fight against brain tumors.
- "Making Cancer History"
Univ. of Texas - MD ANDERSON (Houston, TX)
This center is nestled in amongst some other outstanding hospitals in the Houston, Texas area. It is perhaps, the premier treatment facility in the Mid-West. I absolutely love the people at Anderson, they are my extended, extended family. Chief Neurosurgeon Dr. Ray Sawaya is a gem. Al Yung & Victor Levin are outstanding neuro-oncologists.
- "The Best Cancer Care. Anywhere."
MEMORIAL SLOAN KETTERING (New York, NY)
Located in New York, Sloan Kettering is an excellent center. It features Dr. Phil Gutin, MD as
their chief of neurosurgery. Formerly of UCSF, Dr. Gutin is an outstanding clinician. I
understand Dr. Mark Malkin, their neuro-onc to be outstanding as well.
- "A Comprehensive Cancer Center Designated by the N.C.I."
Univ. of Calif. at SAN FRANCISCO (UCSF) (San Francisco, CA)
A top notch brain tumor facility, UCSF has been a leader in brain tumor care for decades.
Their chief of neurosurgery, Dr. Mitchel Berger is excellent. Furthermore, their Neuro-Oncs:
Dr. Michael Prados & Dr. Susan Chang are top-notch clinicians.
An excellent resource for locating a TCE is the address book found at:
http://www.virtualtrials.com/btcenters.cfm
We all would prefer to be treated by the best physicians at the very best treatment center. And surely this exists...but your objective should be to get to a center of excellence, not necessarily the best one. Even the "worst" of these centers will be able to offer you expertise and treatment options that are not available at a typical "garden variety" community hospital. There are many good centers, don't limit yourself to the five listed above. Insurance &/or regional preferences may factor into your decision. Whether you go to a UCLA or an NYU is somewhat negligible...just get to a center!! As you become more educated about various centers, treatments, clinical trials, you may want to align your treatment somewhere else.
The North American Brain Tumor Consortium (NABTC) conducts clinical trials of therapy for adults
who have newly diagnosed or recurrent malignant glioma. Funded since 1993 by the National Cancer Institute (NCI), the NABTC works closely with the Clinical Investigations Branch and Cancer
Therapy Evaluation Program at the NIH. The consortium's Central Operations Office is at UCSF and its Data Management and Statistical Office is at the University of Texas MD Anderson Cancer
Center.
The NABTC consists of ten Member Institutions:
- Dana Farber Cancer Institute (Boston)
- University of Pittsburgh Cancer Center
- Memorial Sloan Kettering Cancer Center (New York)
- University of Texas MD Anderson Cancer Center (Houston)
- University of California, Los Angeles
- University of Texas San Antonio (Pharmacology Core Laboratory)
- University of California, San Francisco
- University of Texas Southwestern (Dallas)
- University of Michigan (Ann Arbor)
- University of Wisconsin (Madison))
Brain Tumor Center Update, UCSF 2001
Be kind to yourself in the education process. Realize that you are being required to learn, in perhaps weeks or months, information it has taken the medical field in its entirety over a century to learn. Give yourself a pat on the back for being able to pronounce some of the foreign terms you have learned and give your brain credit for making new creases in the gray matter to accommodate your new found knowledge. Specialize in your tumor; get to know what is necessary to survive it.
---- Rebecca L. Libutti, brain tumor survivor & author;
That's Unacceptable © 1997
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