Don’t let that name fool you. I don’t have cancer. I thank God every day that I’m not battling cancer. I have a benign brain tumor. Meaning that it’s a cancer-behaving bunch of mutating cells that want to have a party in my brain, but it won’t spread and it doesn’t invade tissue. Most of it is gone, but there is a remaining little bit…I say little because compared to what it was, it is little, but compared to what most people initially find, it’s not little. It’s about 1cm x 1.5 cm right now. This falls into the medium category as far as acoustic neuromas go.

So yesterday we, my husband and I, met with the Radiation Oncologist at the CyberKnife office. Contrary to the name, there are no knives involved. This was a nerve-racking appointment for both of us. We had a lot of questions that were weighing heavy on our minds and we still have a lot of unexpressed emotions about this whole thing that are just an elephant in the room, as they say.

The appointment itself went really well. The doctor was very nice, very thorough and very understanding. He sat and listened and then patiently answered every one of our many questions. He completely understood our concerns, a big one being that we are afraid radiation now is going to have some long-term effect that we can’t possibly know about. Is it going to cause cancer? Basically, what he told us is that there is just not enough documented evidence to make that a concerning factor. He tells his cancer patients about that risk, because, even though it is rare, it is more common with malignant tumors since the dose of radiation used for a malignant tumor is so much higher.

His attitude, his confidence and knowledge pretty much sealed the deal for me. I can choose not to do anything about the tumor right now, but in all likeliness, it will grow back in a time-frame where I would eventually exhibit symptoms. By that time, it may be too big to radiate. From my understanding, once they are over 2.5 cm radiation is no longer a viable option. And although he says they only grow about 1-2mm a year…I’m not so sure about that in my case.

In a nutshell, my options are to do nothing and wait for it to grow back, which it probably will, then face surgery again; radiate now and pray that it kills the tumor and have no surgery again; radiate and on the very small chance it doesn’t work, do another surgery to remove the rest of the tumor, knowing that I will most likely lose my facial nerve.

I chose door #2. And on the very off chance that it doesn’t work, we will know in about 18 months…then I know, without a doubt, that I will have to have surgery again.

I’ll do one (one hour-ish) treatment every day for three days in a row, most likely sometime at the end of May. They use a dose of 6 greys each day, for a cumulative dose of 18 greys. In treating a malignant tumor, they usually use a dose of about 50 greys over a long time period, so this method is mild, and can be fractioned as opposed to GammaKnife which cannot be split up over several days.

The side effects I can expect are fatigue, a flare-up of my tinnitus (I’m not looking forward to that!) and headaches (eh, I’ve had plenty, I can deal with those). The radiation often causes some swelling…in my case, even though my brain has resumed its sorta former shape and glory since they took the lemon out, there is a little bit of room for swelling. And, they will prescribe me some steroids to counteract the swelling, just in case. So I can expect to be a famished, tired, headachy hot mess afterward. Nice. Can’t Wait. Nurse Molli also explained that my shunt will help keep the fluids moving and draining properly so its better that its in there for this process.

Now, we wait for the call. They will have me come in, do a CT scan right at their facility, and do yet another MRI. Then the doctors, including my neurosurgeon, will proceed with the planning which should be about a week. Anyone who can look at my brain for a week deserves a medal…and a cookie. At this time, they will make a lovely plastic mesh form shaped exactly to my face. They use this during the procedure to screw my head to the exam table so while they are shooting the tumor full of radiation, I don’t move. Yikes. It’s quite space-agey and should be interesting…but according to Molli, I can breathe normally. Oh, thank God for that.

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