Fear

I don't want to let fear decide my course of treatment for my low-grade glioma. As a child I did not receive the support I needed when I was in pain or encountered problems. As an adult I get triggered when I am trying to receive support from another adult and they don't see my pain, my hurt (especially when I am feeling scared and vulnerable). This happened last week when I went to see a Minister for support. I had heard her speak and talk about facing death and refer to Buddhism. So I thought she could support me in my journey. My two main issues are the uncertainty I'm facing having low-grade cancer and facing my mortality for the first time my life. We talked about these issues. At the end of the visit she said something like -- you are doing well coping with all of this. I did not feel heard. She thought because I can handle my emotions that I was not hurting. Not true.

I reviewed a few articles tonight. Some of them said there's no advantage to having surgery now. Others said that surgery is recommended when the tumor is found and you are over 50 (which I am). I realized that what I want is to feel that I am making the best medical decision I can, in spite of the conflicting information available. Waiting and watching or surgery followed by watching. I don't want to choose because I am scared of surgery, scared of the quality of my doctors, that they won't support me, but they won't give me the care I need. I want to choose the option that is best for me. I don't want to let the old pain from my childhood dictate my choices now. I want to life that is within the, my intuition, my intellect, and my heart to guide me.

Relatively Good News

I got the results from the Tumor Board today. Given that my tumor has not grown in nine months it is highly likely that it is a low-grade glioma. The results of the MR Spectroscopy strongly suggest that it is a tumor (I was hoping it was a non-tumor, i.e. something else and not life-threatening). I asked my doctor what the chances are that the tumor could be a grade III. He said that nine months ago, at the time of my first MRI, there was a 30 percent chance it was a grade III. Because I did not have competent medical advice, I didn't know this. Now, as I said above, it looks like a low-grade (I or II) tumor. This is much better.

The tumor board and my doctor lean toward having the tumor removed. This is primarily because of my age (over 50). Tumors tend to progress faster in people my age. It's not a recommendation, it's a leaning. I'm not having surgery now. But I'm not entirely settled with that decision. No matter what I choose there are risks and competing information supporting and not supporting it. It's really hard dealing with uncertainty around treatment. I'm going to see another neuro-oncologist in town (I'm lucky there are 2) in September to talk this all over with someone else.