Inconclusive (pretty ridiculous I know).
The period of time between being told “you have a brain tumor” and getting to see actual Neurosurgeons was the biggest emotional rollercoaster my wife and I have ever endured as a couple. I am not going to lie, the primary thought that kept entering my mind was that I without a doubt was not going to live another two weeks to when I was finally scheduled to see the experts. It was difficult to sleep, next to impossible to focus at work, and made me want to scream at anyone who looked at me. There isn’t really a great way to avoid these things, because I can vouch that until you hear the prognosis from a doctor, you cannot focus on anything other than the worst-case scenarios. The only solace I had, and that anyone else in this situation should take is that if it were an absolute emergency (need to operate NOW!!) then you would be pushed to the front of the line in terms of scheduling. Even with this small comfort, this period is BRUTAL.
We went to speak with three different doctors and all gave the same response; that given the size and location of the tumor, as well as my relatively young age/good health, surgery was the only option they would recommend. We weighed all the pro’s and cons of the different scenarios; Monitoring (wait and see on the growth rates), Radiation treatments (Gamma-Knife / Stereotactic) , and Surgery. Everyone’s situation is unique, so it is important to find doctors who are willing to sit down and spell these out for you in plain English. In the end, my wife and I agreed that any scenario that left the tumor in my head wasn’t acceptable and we opted for surgery.
ADVICE: Make sure to seek multiple opinions from Neurosurgeons, neurologists, as well as neuro-radiologists if possible. You may have a different case where it is smaller / easier to reach / slower growing etc., and can be more or less aggressive. Whatever you decide DO NOT rush to a treatment decision lightly. You are in a fragile state.
Neither surgeon would definitively tell me whether I had a Meningioma or an Acoustic Neuroma because the MRI was not a conclusive test for this. Unfortunately only during surgery will the doctors know which tumor I am facing. I was told that either one of these are “typically” benign, but we still do not know at this point. The only way they will know for sure is when they remove the tumor and run a biopsy post-surgery. This doesn’t make it easy, but getting some direction and reassurance that surgery does not have to be the next day allowed us to calm down somewhat. Just be ready for a lot of technical discussions about the procedures, which can and will be graphic. Stop the doctor if you aren’t a “detail oriented” person and would rather skip the messy details that come with someone cutting into your head.
After meeting with two well-respected Neurosurgeons, we now had to make the decision of which one we would select to cut out the unwanted guest. Like is true with so much else in this journey, this was really difficult! One of the more important things to do is first identify surgeons & hospitals that specialize in treating your type of tumor. That way you can feel comfortable with whichever doctor you decide to go with in the end. My wife and I remind ourselves to be thankful of a few things; first that we live in the 21st century where there is amazing technology and various treatment options to identify and manage these things. Second is that we are also blessed to live in Boston where there are multiple first rate hospitals to choose from. While we liked and respected both surgeons and hospitals we met with, we ultimately decided to go with MGH (Massachusetts General Hospital) because of their extensive experience in neurosurgery, and in my specific case, skull base tumors.
There was a lot of relief that came with choosing our mode of treatment, and doctors. As I mentioned, it is so crucial to find a team and place that makes you feel comfortable ( or as comfortable as you can be when dealing with brain surgery). Possibly even more important is to leave feeling CONFIDENT in your surgeon’s abilities and that you have made the right decision.
No looking back. “Time to destroy this tumor” kind of thinking from here on out.