The Diagnosis

Typically when you are told there is a brain tumor, you have just received the worst news of your life. If you are NOT the patient, you must become the advocate. Gather yourself and be prepared to fight. You will be tempted (sometimes rightfully so) to just blindly follow what you are told. I want to remind you of something important; the doctors work for YOU! They certainly know more than you, but you MUST remain in control.

It is likely you know NOTHING about GBM, it is rather rare. That is why we are here, to ensure that you have the facts, sometimes brutal facts, and guide you through the critical beginning of this journey.

Questions You Must Ask

It is time to ask questions. Find out if it is a Primary tumor, meaning it did NOT start somewhere else in the body. If they say Yes, tell them you want the “Worst Case Scenario”. If the news down the road is better, consider it a blessing.

If you have been told surgery is needed immediately, say “STOP,” You need to process this. Ask what will happen if we don’t do the surgery? It is time to get real details. How long can you wait before deciding, what are the repercussions of waiting and what is the anticipated outcome of surgery? What does life look like after the surgery?

Time to Act

There are many things you need to know. Unfortunately, many of these questions will not be “officially” answered until they get a pathology report back on the tumor. This can take 2 weeks in some cases. But be persistent; you need a “Best Guess”. 

·        Where is the tumor located? You need the doctor to explain what that portion of the brain controls. (see brain maps on this website)

 ·        What deficits will this surgery cause? Some patients do very well after a “Craniotomy”, It depends on the location.

 ·        Should the patient be transferred to a different facility? Is your hospital a brain tumor center? (If not, find one as fast as you can in your area and call them – See list on this website)

 ·        What is the plan for care after surgery?

 ·        Will there be rehab involved? (There should be if only to see how the patient will handle everyday tasks)

 ·        What happens when the patient gets home? Will he/she need “round the clock” supervision? (The frontal lobe controls the judgement and impulse control)

 ·        Has the patient already received seizure prevention medication?? (If so, you may not get good answers from the patient.)

 ·        If not, why not. Write down the medication name(s). Kepra is common.

 ·        How long will patient live and what quality of life will follow surgery?

 ·        What trials are available to this form/location? (You may have to wait for an actual pathology report to find this answer. There are different distinctions and grades. GBM is not measured in stages, but in grades, such as how fast the tumor seems to be growing. This is different that other cancers that are measured in stages.)

 ·        Can steroids be used to lessen growth/swelling? (They will tell you that one can’t be kept on steroids for long periods, but they can also be a god send – it depends on how they are tolerated by the patent. More on steroid use later)

 Before surgery:

You MUST get all the information you can get from the patient. This seems terrible to say, but you need to get this information; sooner IS better. Take my word for it, MOST people are not prepared for this kind of life event.

·        Bank account passwords

·        401K Information

·        House mortgage/Deed information

·        Wills – Are they up to date

·        Life insurance details

·        Computer Logins/Passwords

 You opted for surgery; that’s ok – you can only work with your instincts now. Remember that. You are not an expert and even the “Experts” don’t have all the answers. Be prepared, you may need to now go into what I called “Pit Bull Mode”. When the surgeon is done with surgery, you must FORCE him to tell you his BEST GUESS. Believe me, if he is a neuro surgeon, he has seen GBM and knows it by sight. Here is what you need to know. Some of these issues were covered above. Read from the beginning again.

·        Is this without doubt Glioblastoma? (Or Glioblastoma Multiform)

 ·        What options are now available?

 ·        When will cancer doctors be talking to us?

 ·        Where is the best place for further treatment?

 ·        How much brain tissue was removed with the tumor resection?

 ·        What deficits will be noticed, including those not as noticeable?

 ·        Is Chemo and Radiation still the S.O.C. (Standard of care)?

 ·        When will we have the pathology report? Whom can I call?