Checklist for the Newly Diagnosed
You've just been given what is possibly the hardest news you have ever been given: you or someone close to you has been diagnosed with a brain tumor. You may find yourself caught in a whirlwind of emotions, doctor's appointments, visits from concerned friends and family, and in this tumultuous situation, you may have little time or ability to gather your thoughts on life-altering decisions that need to be made immediately. This short list is intended to guide you to some critical information that is important to know
in that stressful, emotional and even chaotic time immediately post-diagnosis.
1. Seek out the most advanced and specialized care that is available to you.
Many smaller, local centers may offer surgery and treatment for brain tumors, though these centers cannot offer the same state-of-the-art facilities, technologies, and doctors specializing in your tumor type that are found in larger brain tumor centers. Seek out the most experienced neuro-surgeons specializing in brain tumor resection. Even if it means traveling farther afield, larger centers likely have more clinical trial options, advanced pathology facilities to better diagnose your tumor, better ability to store tumor tissue for future testing, and familiarity with the latest science and advanced diagnostic and surgical techniques.
2. Consider joining a clinical trial.
Some clinical trials require registration before the initial surgery takes place, such as fluorescence-guided resection with 5-ALA or the custom made vaccine trials. If your tumor is deemed "inoperable" you may first want to consider a second opinion. Then you could consider an alternative to surgery such as NeuroBlate (Laser Interstitial Thermal Therapy), available at centers across the USA such as the Cleveland Clinic, or MRI-guided focused ultrasound, which is an experimental therapy being tested at only a few locations. Stereotactic radiosurgery (such as Gamma Knife) may also be an option.
3. Inquire about the Optune device (Novocure).
Formerly called NovoTTF (Tumor Treating Fields), Optune (marketed by Novocure) is an FDA approved therapy for both newly diagnosed as well as recurrent glioblastoma. Since it is new, some treatment centers might not yet offer it, so find the closest center offering Optune at the Optune website and ask if your medical insurance will cover it. If not, or if you are without insurance, financial assistance programs are available. Note, this therapy is currently available in the USA and several other countries.
4. Request genetic testing of your tumor tissue.
Your tumor tissue should be tested for genetic mutations such as MGMT status, H3 K27M (or mutation of the H3F3A gene), IDH1 mutation, EGFR mutation/amplification, etc. These are very important and can change your treatment plans. If MGMT is unmethylated, Temodar has less of a chance of helping and this opens the door to other treatments instead. If H3 K27M (or H3F3A), EGFR, IDH1 or other genes are mutated, there are targeted treatments available. It is best to discuss the tests with your surgeon prior to surgery - if they do not offer these tests routinely, you can ask them to send the sample to a lab. Two companies that offer this testing are Caris Life Sciences and Foundation Medicine.
5. Ask how your tumor tissue will be preserved.
Brain tumor tissue is commonly preserved by the FFPE method (formalin-fixed paraffin-embedded). A better alternative is for the tumor to be flash-frozen in liquid nitrogen. One advantage of freezing is that the tumor tissue is preserved intact and may later be used to create personalized cancer vaccines. One company that provides this service is Store My Tumor. Note that this has to be discussed with your surgeon before the surgery!
6. Educate yourself.
A good starting point is the virtualtrials.com website. In the "Learn About" section of this website, you'll find a Brain Tumor Guide for the Newly Diagnosed available as a free download. Further down the "Learn About" section you'll find an archive of articles called Noteworthy Treatments. In the "Interact" section of the website you'll find a video library of talks and presentations on all things brain tumor related. Another useful resource is the Patient Resource Center, in the Patient Support section at the chriselliotfund.org website. You may choose to designate someone to research on your behalf (see Designate a support team, below).
7. Join a support group.
Through the virtualtrials.com website you can also join several online support groups. Find these groups and more in the "Resources" section of the website, on the Online Support Groups page. One of the most popular of these groups is the BrainTumor Treatments group. Some prefer to create a separate email account for these email discussion groups. Also in the "Resources" section is a page listing various real-world support groups.
8. Recording and organizing information.
Request all documents related to your diagnoses and treatment, including all pathology reports. Ask for a copy of every scan on a DVD. Keep these organized in a binder. This binder can also contain whatever notes you take along the way. You may also consider making audio recordings (for example on your Smart phone) of your appointments with your oncologists for future reference. Another option to help remember what is said at appointments is to bring along a friend or family member who has a good memory.
9. Designate a support team.
Receiving a brain tumor diagnosis is an exceptionally emotional and confusing situation. Unless you are especially skilled and motivated to do your own medical research, it may be best to designate a friend or family member who can research treatment options and all things tumor-related on your behalf. Another person can be the designated contact to relay news to your larger network of family and friends.
10. Insurance and finances.
Upgrade to the best medical insurance you can afford. Medicare patients should seek out the best supplemental policy they can, avoiding Medicare Advantage Plans that limit their choice of doctor. The Musella Foundation runs a co-pay assistance program for people with insurance to help with expenses related to Optune/NovoTTF, Avastin, Gliadel, and Temodar. For people without insurance, the Musella Foundation offers a Drug Discount Card, which can give discounts for prescription and non-prescription medications.
Guide for the Newly Diagnosed
free download provided by the Musella Foundation
Surviving Terminal Cancer
documentary by Dominic Hill, featuring long-term GBM survivors such as Ben Williams.
a patient-focused site which reviews the scientific literature and explores options for gliomas of all types.
Chris Elliott Fund
“Providing national patient and family brain tumor support”.
This page is a team effort by the volunteers of the Musella Foundation, and is edited by Stephen Western
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This page was created on 04/03/2015 and last updated on 02/01/2019