The Dilemma of Low-grade Glioma

After feeling really up on Friday -- this is probably nothing to worry about and just get yearly scans -- I began to wonder how could two excellent doctors, both chiefs of surgery, come up with such different opinions? I felt like this person hanging in mid-air not knowing what she was going to fall down on when whatever was holding her up disappeared. I felt overwhelmed and scared and frustrated.

I had been avoiding searching the Internet because I thought it was a waste of time and would burn up more energy. Sunday night I was so disgusted and overwhelmed I decided to search anyway. And low and behold -- I found articles. And There Is Not Consensus on How to Treat What I Have. I felt relieved to learn this. And it is an awesome responsibility to make a decision on treatment when the doctors are not in agreement on treatment approach and the potential down sides are large. One helpful article, which I paid a fee to read, is The Dilemma of Low Grade Glioma. The article reviews the literature and talks about pros and cons of surgery and wait and watch.

After My Second Opinion, How am I Feeling?

I am relieved. And mad. I believe I can now get on with my life. I really got scared when the first doctor told me I had received the wrong diagnoses the first time. And that I needed surgery. And some of that fear is still with me. I am breathing a big sigh of relief. At the same time, I don't think I will be really settled on this until I go back and talk to the first doctor and find out what's going on in his mind. The little kid inside me is reeling, what does she believe?; she is also trusting the adult, that the adult is taking care of her. I guess it's a question of where do I put my trust? When a disturbing, difficult diagnosis is made I would like to know whether its controversial, how that doctor treats other cases, what other schools of thought there are. It is very hard to hold this openness and all of these possibilities and the possibility that doctor is wrong when hearing "I recommend brain surgery."

I am very puzzled and confused. I want to know why the other doctor said what he said. Why did the other doctor recommend surgery and want a repeat scan in four weeks? Does he see something the other doctor does not see? He told me that the reason for the different diagnoses was that their equipment was better. My second opinion doctor said "that's their standard line..." Is it really true that they have better equipment? Than who? I am mad at this doctor -- does he just recommend surgery to everyone? What is going on?

Second Opinion -- What Else Did I Learn?

This doctor recommended that I get an MRI annually for the next three or four years. If no change is seen then it's not a glioma and I don't have to get any more brain scans. I have a 10-20 year period of possible transformation of a low-grade glioma to a higher grade. If I do have a low-grade glioma we'd see a change in two to three years.

So What Does Surgery Do?

The doctor I talked to today said that surgery is not a cure. Surgery provides a definitive diagnosis and "debulks" (makes smaller) the tumor. It is believed, but not proven, that fewer cancer cells are easier to treat with radiation and chemotherapy. If I do have a stage I or II glioma surgery does not remove all of the glioma cells. Some cells will be remaining. And if they're going to change into a III or IV, they will still do this. In fact, surgery can sometimes cause cells to change grade. In addition, radiation treatment may also create risk on low-grade gliomas. If I do not have surgery and the cells change grade the tumor will grow. Then we know it's time for surgery and treatment for cancer. Until that happens, if it ever happens, it this doctor's opinion that it doesn't make sense to do surgery. Furthermore, if I were to need surgery and cancer treatment in the future they're likely to be improvements that I can take advantage of.

My Second Opinion

I saw the senior doctor at a neurosurgery practice associated with the largest private hospital in my area. His opinion was completely DIFFERENT than the first doctor. Amazing.

Like the other doctor he said the only way to be sure what the tumor is is to operate. Unlike the other doctor he said that the MRI gives us a lot of good information and, from it, he can tell that the tumor is not serious. He would not operate now. He sees no reason to expose me to the risks are brain surgery. The tumor is likely one I was born with (heterotopia, also referred to as dysplasia which has a different meaning when referring to the brain. It does not mean precancerous.). When the brain is developing it's possible for some cells to not differentiate completely into the various types of cells in the brain. These cells can be together in a group and form a tumor. The fact that the tumor has not changed/grown in the last six months makes this diagnosis a likely possibility.

The Practical Stuff

Tuesday, May 25. I stayed home from work today because I felt awful. I made phone calls and lists and that felt really good. I contacted the Brain Tumor Society. They have a social worker you can talk to and a volunteer program that matches people who have been through brain tumor treatment with those who are starting out (or wishing support at any stage). I asked about getting second opinions and requested a volunteer support person. It was great to talk to somebody. She told me that the usual course of action when a brain tumor is found is to remove it, if possible, and do a biopsy of the tissue. This was comforting to me because that is what my doctor recommended. She also recommended that I choose a place that handles a lot of brain tumors annually. I called my therapist for support. I talked with two friends -- one of them is going to take me to pick up my MRI on Thursday and to my second opinion on Friday. Oh, I arranged for a second opinion. I called my doctor's office to see how many brain tumors he handles per year -- 300. The nurse said it's more than any other doctor in a four state region. I called another hospital and am waiting on the number of brain tumors surgeries they do per year.

My Inner Child

This calmness emanates from listening to and comforting my inner child, and from telling a friend that I am really mad about all of the us. A couple of days ago I went inside and saw that my inner child was sitting there, blood red all over, and SHOUTING AT ME. "You are supposed to keep me safe. You didn't do that. I am furious at you. I hate you." I tried to touch her and she would not let me. My therapist suggested trying to comfort her. So I went inside and tried that -- she didn't trust me. But she decided that I could put a sheer cloth around her with a soothing salve. Later yesterday I went inside and got down to her level, starting out close. She told me to go back. I told her that she could be mad and I would stay here. She really liked this and allowed me to move closer and to touch her a bit. Sometime in the middle of the night, when I awoke, I got a picture of a spirit surrounding us, me and my inner child, providing us comfort and holding us both. Mmm...

I Slept Last Night

Thank goodness, I slept last night. And my sore throat is nearly gone. And my body is nearly relaxed. Ahh...

I'm Crying, and Then...

I've been sitting at my computer and listening to Prairie Home Companion and crying when hearing the soft gentle singing of Celtic songs. My body is sad all over. It's a sadness without specifics, without specific thoughts going with it. I have fibromyalgia resulting in me being weak, fatigue (I need 12 hours of sleep a night), and minor injuries such as sprains and tennis elbow that take forever to heal. Removing possibilities of cancer and the risks of surgery, this is all still a very big deal to me. I am scared that I will get even weaker and be more limited than I am today. Having major surgery and the 4-6 weeks of recovery is a big deal. My friend just called and I told her about my fear. And then I thought -- what if I had someone take me to the pool every day after two or three weeks of recovery? I could walk in the pool and regain strength and maybe even get stronger than I already am. Maybe I could get to the place where I would be strong enough to take myself to the pool. In the lingo of Nonviolent Communication (CNVC)I shifted. I'm not crying now, I'm feeling hopeful.

I Want to Do the Important Stuff

I wrote down all the dates of my nieces and nephews performances -- it's the end of the school year... I want to make as many as I can. This family is very dear to me. I'm throwing out the window my usual conservative approach to life -- going out very few weeknights. The surgery will probably go great, and hopefully it won't be cancer, but if the worst happens I want to live life as fully as I can while I am here. I just don't want to leave them. I am feeling really sad right now.

And I want to play my violin. I had injuries, and it is painful. In music festival is coming up Memorial Day weekend, perhaps I can find a band I can play with...

And What about Today?

At 9 AM I wrote -- So what do I do today? Part of me wants to go to the Nonviolent Communication training on love and intimacy. Part of me wants to stay home and write and let the feelings bubble up and be with myself. And make phone calls.

This is the pits.

It's now noon and I am writing my blog. I have chosen to stay home for the morning. It feels good. I got a call from Gina, my mom's friend. She had been at the dance last night and had heard that my mom was at my house. She thought she had stayed the night. I got to know Gina when my dad was sick. She's warm, could get my dad laughing, told me I would be in her thoughts, and said I could call her anytime. I might go to the training this afternoon, who knows?

Last Night

Last night I called my mom. She was great. After I told her she asked me whether I wanted to be alone. I responded -- what are you doing tonight? I knew I didn't want to be alone. She said, well, I was going to dance but I need to do that. How about I come to your house? And bring dinner? She called back a couple minutes later to say that my nieces were in a concert -- way out in the tuulies -- how about going? So we did. It was beautiful. And the words seemed designed just for me. After words we went back to my sister's house for ice cream. Steve, the youngest (8 years old) had everybody rolling "in the aisles" with laughter as he performed his part in his upcoming play "Simpleton." I got completely lost in the laughter. It was so life affirming and so wonderful.

Day after the Diagnosis

I sat down at my computer this morning to look up the Brain Tumor Society web page and thought -- this isn't fair. Why has this come into my life 3 weeks after my dad died from a Glioblastoma Multiform IV brain tumor...?

My father worried about everything. I realized as I got out of bed that whether I worry about the outcome of the surgery or not the outcome will be the same. I'm afraid of a small chance of major competitions or death. Surgery is scary.

I'm pissed that my attention is shifting to my brain tumor. I was just starting to work with my grief. I was just starting to branch out and try new organizations to make new friends and start dating. Just like the three and half months my father was sick my attention is now focused away from these goals and on health and illness. It's not what I wanted. It's not what I wanted.