A New Checklist for the Newly Diagnosed of Brain Cancer
Waiting for the new version of the guide of the Musella foundation for New Diagnoses of Brain Cancer that is scheduled for spring 2021 and of which we will take care of the Italian version, the Checklist of things to know has recently been updated.
There are not many changes compared to the article “10 THINGS YOU SHOULD KNOW IN CASE OF A BRAIN TUMOR“. Below you will find the slightly modified checklist in order to be more adherent to the Italian situation where for example the insurance aspects are less important considering that we have excellent public health.
1. Search for the most advanced and specialized center available
Many local centers can perform surgery and treatment for brain tumors but cannot offer the same advanced cutting-edge facilities, technologies and doctors that are available in centers specializing in the treatment of brain tumors. Look for the most experienced and specialized neurosurgeons in brain tumor resection. Even if it means traveling, the major centers probably have more clinical trial options, advanced pathological structures to better diagnose the tumor, better ability to store tumor tissue for future tests and familiarity with the latest advanced diagnostic and surgical sciences and techniques.
2. Consider joining a clinical trial
Some clinical trials require registration prior to initial surgery, such as 5-ALA fluorescence-guided resection or personalized vaccine studies. If your tumor is considered “inoperable”, you should ask for a second opinion. Then you could consider an alternative to surgery such as NeuroBlate (Laser Interstitial Therapy Therapy) or focused ultrasound guided by magnetic resonance, which are experimental therapies that are tested only in some locations. Stereotactic radiosurgery (like Gamma Knife) can also be an option.
3. Ask if the Optune (Novocure) device is available
The Optune device, which treats brain tumors by delivering alternating electric fields, is a new therapy approved by the U.S. Food and Drug Administration (FDA) for newly diagnosed and recurrent glioblastoma multiforme (the most common type of primary brain tumor). In Italy the device is not yet part of the standard treatment as is the case for example in Austria and Germany. Since the device has only been made available in recent years, some treatment centers may not offer it yet. So, find the nearest brain tumor center that makes it available.
4. Request complete genetic tests on tumor tissue
Your tumor tissue needs to be tested against molecular markers because this information can guide treatment choices. If the MGMT status is not methylated, Temodar is less effective which instead opens the door to other treatments. If H3 K27M (or H3F3A), EGFR, IDH1 or other genes are mutated, targeted treatments are available. It is better to discuss about these tests with the surgeon before surgery because if these are not offered, you can ask to send the sample to an external laboratory.
5. Ask your surgeon how the tumor tissue will be stored
The conservation of tumor tissue must be discussed with the neurosurgeon before surgery. Brain tumor tissue is commonly preserved in paraffin and fixed in formalin. A better alternative is that the tumor tissue is quickly frozen in liquid nitrogen. An advantage of freezing is that the tumor tissue is kept intact and can subsequently be used to create personalized vaccines.
6. Gain as much knowledge as you can about your brain tumor
Read the guide of the Musella foundation and visit the virtualtrials.com website where you can also find interesting videos with subtitles. Speaking of videos, the Dominic Hill documentary “Surviving Terminal Cancer” is very interesting (you can select the subtitles in Italian) as well as the website “Astrocytoma Options” now “Our brain tumor cocktails and stories“.
7. Remember that you are not alone and that you do not have to face this alone
Consider joining online or real-world support groups. Receiving a brain tumor diagnosis is a very heavy and emotionally confusing situation. Unless you are particularly skilled and motivated to do your medical research, it may be best to designate a friend or family member to search for the different treatment options and to follow up on everything that has to do with your cancer. Another person may be in charge of relaying news to your network of family and friends.
8. Request, register, organize and store all documents and information related to your brain tumor
Request all documents related to diagnosis and treatment, including all disease reports, and keep these documents organized in a binder. This binder can also contain all the notes you take day by day. You can also consider making audio recordings (e.g. on your mobile phone) of the appointments with your doctors to consult and review them in the future. It may also be helpful to bring with you a friend.