Why are yearly MRIs needed after a primary brain tumor? What are some key phrases you can check for?
Why yearly MRIs
The first and most important thing to do if you are in this situation is make sure you are getting a copy of EVERY doctor's visit, scan, treatment, ect. Start and keep a file that you can copy and carry with you. I say copy because you will want one for yourself that remains unaltered and one you can take and piece as needed. A cliff note version is also helpful if you are like me and have many different specialists crossing many different fields.
After a primary brain tumor be prepared to have a MRI every year. If you have surgery to stabilize the tumor this MRI will include contrast to make sure that the scars from surgery are not misread as tumor activity. There is no 1 year, 3 year, 5 year remission process for brain tumors. Another major misconception I had was that "stable" meant "gone." Primary brain tumors are considered "Exhibiting" or "Non Exhibiting," but for insurance purposes you will never be considered "Cancer free."
These are some hard pills to swallow if you are not prepared, and honestly even when you are prepared they frankly just suck. It took us over 4 years to really understand what the notes say and what was going on. This led to a lot of bitterness, anger, and resentment over the years due to the fact that we could not understand why I was still encountering problems when the "tumor" had been removed. The reasoning took many hours, lots of tears, repeated questions, and finally some out right yelling matches in the doctor's office to finally understand the terminology used for Glioblastoma's and their care. Below are some facts we have found out about why yearly MRI's are required and what to prepare for and look for in the results.
The original title of my surgery was: "Stealth reduction of a mass from the right temporal lobe." Sounded simple enough, I had no idea what we were in for or what we were reading on the doctor's notes. Hopefully some of these phrases help someone else.
1. A Glioblastoma is a primary brain tumor. A primary brain tumor in layman's terms takes over brain matter as it grows and evolves. This means that the image seen on the MRI and CAT scans is infected brain matter that has been destroyed by the cancer.
2. "Stabilization" of the tumor requires a craniotomy and brain surgery. A craniotomy is in short where they cut your skull open in order to reach the brain and get to the tumor. Once they have removed the skull, they then will cut into the brain and physically remove the infected brain matter. Yes, this means they will be removing a portion of the brain, and no the brain does not regenerate, but we will get there.
3. Since primary tumors literally take over the matter they are infecting, a primary brain tumor takes over the brain. There is no "capsule" to give the doctors a clear line of where the tumor begins or ends. When primary tumors are in other places on the body doctors will remove tissue well around the infected area to ensure that all of the cells have been removed. Since the brain does not heal or regenerate, neurosurgeons only take cells they can see are infected. This means they have no extra tissue removed and therefore will NEVER say that they removed "all" of the tumor.
4. In order to reach the tumor and remove it there will be damage done to the brain. This is a traumatic brain injury and should be treated as such (we did not realize this, but the terminology is important when dealing with the state and Social Security Disability Insurance or SSDI. SSDI does not cover cancer, but the state offers a lot of help for people with traumatic brain injuries so the phrasing here is important. Brain matter, unlike other tissue in the body does not heal. Any damage done will be there forever. It is important to get help for this injury as quickly as humanly possible. Do not delay like I did.
5. The contrast is used to help the readers of the radiology reports determine if the artifacts they see on the scans are from new cancer growth or exhibition of the disease versus the scar tissue that was left during the original surgery. The technicians will start by performing an MRI with no contrast which for the brain takes about 20 minutes. If you are lucky they have headphones and can play music, otherwise it is VERY boring. Once the first scan is complete they will pull you out of the machine give you the contrast injection either through a shunt or simply injecting it in. I have been told there is no taste or smell to the contrast, however, after as many as I have had there is absolutely a metallic smell that is almost like putting a penny in your mouth.
6. For a MRI of the brain with and without contrast results should be available within a couple of hours. The facility will often give you a disk of the results and the MRI if you are willing to wait or you can return a different day. At this point, I know what I am looking for and my care team is scattered so I get a copy in order to take with me for them. (It also reduces stress to have the results. So far thankfully my results have showed nothing exhibiting, but even if it did, I would want to know as soon as possible.) Having a copy for your records is also helpful for other things such as state documents and such. It is always a good idea to have and it is your legal right to be given a copy. Use it.
The issues above are why you will need to be checked at least yearly for new growth. Once a tumor is considered to be "not exhibiting disease" (NED) getting care will become more difficult. You simply are not as interesting to the neurologists as you would be when you need surgery, and as I have been told and I quote: "I have real sick people to help." It is important that you have an advocate for you at all meetings. Yes, the MRI's are difficult and I recommend seeing a counselor before and after regardless of the results; however, they are necessary to determine if there is any angioplasty or new vascular growth in the area as quickly as possible which can only be done through the MRI.
This will not be fun, and you need support of a trained counselor to help come to acceptance of this condition. Don't be afraid to ask for this help!!!