When my husand, Leo, was diagnosed with glioblastoma in October, 2020 it was shocking. He woke up one day slightly off-balance. We thought he had a minor stroke but a few hours later, in the ER, we were told he has a brain tumor.
I created this web site to share all that I have learned since Leo's diagnosis. I also hope that through my efforts we can increase awareness which will hopefully increase action. This diagnosis is devastating and the fact that current treatment protocols are not effective enough is unacceptable. We need to do better, we must act fast... Cure GBM Now!
What I find unacceptable...
1. No one should get a brain tumor diagnosis - period. But, if there is a brain tumor and the patient has to be told it is inhumane for a healthcare professional to deliver the news and then walk out the door. I am proposing an initiative titled "Walk in with Faith." If a doctor has to deliver shocking, devastating news and he/she does not have more than a moment to spend with a patient, then a member of pastoral care should walk in with the doctor. The pastoral care rep can provide conversation and comfort upon the diagnosis.
2. Current protocols MUST catch up with current research and clinical trials. When a tumor is removed it needs to be preserved in a way that is consistent with the requirements of today's clinical trials. Often that means freezing the extracting tumor without preservatives. Instead, many hospitals preserve the removed tumor in paraffin wax and this action immediately removes the patient from eligibility for many cutting-edge clinical trials. Most need frozen tissue free from preservatives and/or tumor that has been preserved other ways. This is a slight adjustment that would provide the tissue necessary for the patient to enroll in a wider array of clinical trials.
3. General hospitals won't say this so I will... when it comes to glioblastoma, the brain surgery needs to be conducted at a major brain tumor center or institute.
Major brain tumor centers have the best equipment, skill and experience needed to resect as much of the tumor as possible. The amount resected initially during the first brain surgery directly correlates to prognosis. Brain tumor centers typically seek to remove 90% or more of the tumor. General hospitals do not have that type of experience and instead strive for 80% removal which is not enough - and leaves too much dependence on chemo and radiation and directly hinders long-term survival and prognosis.
4. Since there is currently no cure for glioblastoma, clinical trials are vitally important. There are three windows of time for clinical trials. They are 1) Before surgery; 2) After surgery before radiation and 3) Not until after radiation if/when there is a recurrence. If the first two windows of clinical trials are missed, then patients and families are left in limbo following radiation, hoping and praying that each MRI returns with good news and holding breath for if it doesn't. This can happen any way but leveraging the first two windows for clinical trial gives added potential for effective treatment.
5. When a brain tumor is found, the majority of time a patient has at least a week or two to have surgery. Instead, they are typically told surgery must be done immediately - in a matter of a day or two. While that might be the case for some people, the majority have time to stop, lean, research and make the best decision possible as to where to go for surgery (i.e. a top brain tumor institute) and what clinical trials are available at that institute prior to or during surgery. Identifying and going to a major brain tumor center helps to fulfill all other items I've listed above.
This is my opinion - you can always vet this - but my hope is that by reading this, you can avoid some of the mistakes we made by simply not knowing and being in a state of shock.