Treatment Suggestions Upon Diagnosis
Typically, within several days of a glioblastoma diagnosis, resection surgery is scheduled. Unfortunately, this is a very traumatic time for the patient emotionally and physically, but it is a critical time to begin taking control of your treatment. Decisions you make at this time may have a profound effect on your treatment success and overall survival. No doctor or nurse will claim they can cure a GBM, and in fact, if you stick to a strict, traditional, FDA-approved treatment regimen the only assured outcome is that your statistical odds of living longer than a year are very poor. So long as you do not lose sight of patient comfort, costs, and clinical efficacy, in many ways you need to adopt a "What do I have to lose?" attitude. Think outside the box.
The following is a step-by-step guide, in rough chronological order, to the steps for improving initial treatment success. Although many of these may be very difficult to accomplish, each of them is extremely important to the your long-term survival odds. Try to view the your treatment as a probabalistic outcome, and each of these steps as getting one step closer to a favorable outcome. Not completing one of these steps does not automatically doom you, of course, however every step you accomplish gets you that much closer to success.
- Find a brain tumor center. If possible, go to one of the National Cancer Institute's designated Comprehensive Cancer Centers, preferably one with a brain tumor center. Within the brain tumor community, the Top U.S. 10 brain tumor centers usually include Duke University, University of California San Francisco (UCSF), The Mayo Clinic, UCLA, MD Anderson Cancer Center, Sloan Kettering, Dana Farber, and the NIH headquarters. If you can not have all of your immediate treatment at a brain tumor center, register with one as a patient right away so they can review your records, steer your treatment regimen, provide second opinions, and enroll you in studies.
- Find the best neurosurgeon available. Anybody who works in medicine will tell you that not all surgeons have the same degree of skill or experience. Ask for recommendations from friends who work in the medical field and have knowledge of your geographic area.
- Get second opinions. Do not accept a diagnosis of "inoperable" tumor without consulting at least 3 different neurosurgeons. Find more aggressive, more experienced neurosurgeons if necessary by posing the question on the MIT BRAINTMR listserv.
- Push for aggressive resection surgery. Many studies have shown that aggressive resection surgery is one of the most important survival predictors. If your tumor can be removed via surgery, this is by far the most effective and full-proof way of removing it. And you can do very useful tests and treatments using the resected tumor tissue.
- Join the MIT BRAINTMR listserv. This is a free, email-based discussion list of over 1,000 brain tumor patients and their care givers who exchange information and try to answer each other's questions.
- Prepare for depression. I once heard an oncologist say that all glioblastoma patients are, by default, depressed. Beware of the signs of depression and treat it medically if necessary. A glioblastoma diagnosis is a huge blow to anyone and refusing treatment is a common reaction brought on by depression from all the horrible news.
- Get and read front to cover Ben Williams' book "Surviving Terminal Cancer". Prof. Williams is a 11-year GBM survivor with a Harvard PhD and still teaches at UC San Diego. His book is filled to the brim with pragmatic, science-based treatment suggestions interwoven with his personal story.
- Get into an immunotherapy trial. If you are having resection surgery, contact an immunotherapy trial about enrolling. Immunotherapy "vaccines" have some of the best survival statistics of any GBM treatment, and usually can only be created from fresh, live tumor material.
- Test the resected tumor. If you are having resection surgery, there are several types of tests which require fresh, resected tumor and can provide extremely useful information on how to test your tumor. All brain tumors are genetically and morphologically unique. No treatment works in 100% of patients and many only work in less than half of patients. The most valuable tumor tests screen for growth factor expression, MGMT expression, and chemo drug sensitivity.
- Begin working on nutrition and supplements. An oncology nutritionist provides a vital role in brain tumor treatment, and the earlier you can get started on a good diet and supplement regimen to help treat your brain tumor, the better.
- Form your team. Designate close friends or family members to take ongoing roles as part of your team: the medical expert, the nutrition expert, the insurance expert, and the "fun" expert. Designate someone to attend all medical appointments and keep notes or recordings as records.