A Sense of Peace

I'm not having surgery. Based on what I know now that is my decision. What a relief. The combination of the neurosurgeon's opinion and the sense of urgency I sensed from him stimulated fear and confusion in me and the thought "wait a minute, what is going on, this is so different from the other doctor." I was thrown for a loop. The fear and confusion I felt motivated me to learn a lot and make my own decision. I'm glad that I'm not simply relying on a doctor.

I'm going to eat some breakfast in a bit, and take care of myself today. And also make a list of my questions for the neurooncologist. And perhaps link this blog to a web site. I want to share my journey with the world. :-)

I Remembered...

Later yesterday evening I remembered something else the neurooncologist said -- three doctors have recommended that you don't have surgery. And he repeated that. Last night I was sensing it was a hint-- that the doctor did not feel the freedom to disagree with the neurosurgeon so he gave me a hint. Now I'm wondering, with something so important would he really take such an indirect route? I'm going to ask him directly next time for his recommendation. On another note, when I looked up the neurosurgeon's research papers they were focused on glioblastoma multiforme grade IV. So he may see the world through those lenses. I still want to glean "the truth" from a doctors -- I think I'm starting to read things into statements/information that isn't there.

Weighing Choices

So here's my summary. If I magically knew my tumor grade --
1. Non-tumor (learn from test): no surgery
2. Grade I: no surgery
3. Grade II: no surgery
4. Grade II with III (or III): surgery

If it is a tumor, here's what I have learned:
1. Not relevant
2. Grade I -- less likely given my age
3. Grade I or II -- 70%-85% likelihood
4. Grade II mixed with III (or III) -- 15% likelihood, could be up to 30%

If I choose surgery it would be because I want to know if I have grade III cells so I can have it treated. So, I want to find out how reliable MRI scanning is in telling me whether my tumor is transforming. If it is reliable, then I could wait. But, nothing will tell me if I already have grade III cells, nothing but surgery.

What about grade I or grade III?

What if I magically knew it was a grade I tumor? I would wait and watch without a doubt. The tumor-related risks are small since my tumor is not close to important parts of the brain. And if it were to start to grow it generally would be slow and I could have it taken out when needed, if that ever happened.

What if I magically knew it was a mixed grade II with III cells? Then I would have it out. And I would probably treat it aggressively -- I would gather information first but I expect that's what I would do. And if this is the case, it's better to do it sooner rather than later.

And There's the Rub -- If It's a Grade II

Controversy surrounds treatment of grade II tumors. If I magically knew that I had a grade II tumor, with no III cells in it, what would I do? I know that they can transform into grade III tumors. I asked to the doctor I saw on Wednesday -- does it matter, in terms of long-term survival, whether I have such a tumor out now or later when it starts to change? His answer -- "we don't know." He has seen research studies but in his mind there are flaws, such as following patients with CAT scans. CAT scans can miss tumors, and may have other inaccuracies. I would say that if I knew it was a grade II tumor I would not have surgery because the risks of surgery are not worth an unknown outcome. And I would certainly not have surgery plus radiation/chemo because the risks of disability rise a lot (especially memory/learning/concentration, things I use a lot since my physical body is partially disabled) for unknown outcome. hum, maybe I am able to sort things out... at least when I write.

I want to acknowledge that there are many types of grade II tumors (and grade I, and grade III, etc.) with differing responses to treatment and expected lifetimes. What I'm writing above is general. And as with everything on this web site it is not intended as medical advice. Please see your health-care professionals for medical advice.

Seeing the Neurooncologist

Wednesday I saw the neurooncologist at the Cancer Center. I'm going to make him my new doctor for the brain tumor -- he was empathetic, knowledgeable, thorough, and caring. He did not push like the surgeon did. He answered my questions. I am being scheduled for a Magnetic Resonance Spectroscopy -- a fancy MRI that can distinguish between tumor and non-tumor. I have been confused about benign and malignant brain tumors. I asked for clarification and I got it! Given the location of my lesion (which I generally refer to as a tumor), in the right frontal lobe, it is either a non-tumor or a glioma. If it's a non-tumor treatment becomes much simpler and it's not cancer. If it is a tumor the highest likelihood is that it's a grade I or II. Grade I generally do not become cancerous. Grade II can be thought of as low-grade cancer, I think, and become malignant 50 percent of the time. And it be a grade III -- perhaps a 15 percent chance up to 30 percent in some research studies. And it's a grade III I want to get going on treatment. The doctor said that because of my age, I am 50, it's more likely that I have a higher grade than a lower grade (i.e., less likely it's a Grade I). Hum, I've never thought of it that way before. That's kind of scary.

Wednesday I walked into a Cancer Center

I never thought I would walk into a Cancer Center in my life. Then Wednesday I noticed that was exactly what I was doing when I went to see the neurooncologist at the Medical Center. I do not know if I have cancer or not, but taking those steps into that Cancer Center felt like a demarcation in my life.

I just want someone to help me

I am feeling sad and afraid. I have this tumor in my head and I don't want it there. I want someone to help me figure out what to do. And I so wish that the literature had more clarity on what to do. I feel overwhelmed. I looked all day today on the Internet for answers. They aren't there. I did learn a few more things. And found a doctor whose name appeared fairly often on articles about low-grade gliomas. I finally broke to buy dinner and realized how deeply this is affecting me, how deeply sad and scared I am, and how much I WISH THERE WERE RESEARCH that suggested the best approach. I want someone to help me. I want someone who can hold the medical knowledge that I learn from doctors and that I learn from my research and that can help me sort out what I want to do given the information that does exist, my values, the risks, and my current partial disability. Because when I get into this my emotions can overwhelm me. And my friends get overwhelmed, they don't want me to die and I don't want to either.

Running, Running, Walking, Walking...

Wow. What a week. Last night and early this morning my brain and body was running, running very fast. Then I talked to a friend who listened deeply to the pain I feel because I want to be safe and healthy and I want clarity around the best course of action to take to achieve this. So now I've slowed down a bit. Walking, walking.

I got to a place of believing that my need for clarity around the best course of action will be met over time. I can continue to gather information, but not at a frantic pace, and things will become clear. And gathering information can become one of the things I do rather than my total focus. I have also decided not to get surgery for at least three months, if I choose surgery. And I'm going to take a vacation from doctor visits next week. Shift my focus, move towards balance...

My Assessment at This Point

As I am seeing it, doctor one and doctor two have different beliefs, based on their view of the research and their assessment of risks, resulting in different recommendations. Referring primarily to grade II tumors (and mine could be less serious) here is my summary:
Survival Rate:
-- Doctor one believes that surgery plus radiation improves survival rates over waiting and watching(1, explained below).
-- Doctor two would not do radiation on grade II tumors. He does not believe early surgery improves survival.
-- Both agree that grade II tumors convert to grade III at the same point in time whether or not the tumor is removed at the II level.
Treatment:
-- Doctor one treats grade II with radiation
-- Doctor two would not treat a grade II with radiation because of the risks (it can cause brain tumors, and short-term memory loss...)
So:
-- Even if it is a grade II there is not agreement on treatment
-- It might be a grade 0 or grade I.
The Problem Is We Don't Know
-- The only way to know what the tumor is is to take it out
-- MRIs are not perfect. They can tell you why the tumor is really bad. But are less helpful when the tumor is not so bad.
-- It's even possible, perhaps 15 percent of the time, that an MRI that looks like mine is a grade III. But grade III tumors grow and mine has not in six months, reducing this likelihood.
-- And tumors may not be a single grade. A single tumor can contain portions that are II, III, and IV, for example.

I want to find a doctor that focuses on the dilemma of grade II gliomas.

(1) Waiting and watching means having periodic MRIs and removing the tumor when it shows evidence of growing or changing or when symptoms appear.

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Disclaimer: Everything I am expressing on this blog, from its inception, is my opinion and is not intended as medical advice. Please see your health care provider for advice on your particular situation.

Seeing the First Doctor Again

More confusion. I saw the first doctor (the doctor I saw May 21st who recommended surgery) on Friday armed with questions about choice of treatment. He was more difficult to talk to then the third opinion doctor. And he is extremely knowledgeable which I really like. When I would start with a question such as, "if it's a glioma II then" he would interrupt me and say -- what type of glioma II, and start to list out various types... I would then rephrase my question. I was able to learn a lot. I told him that I'm emotionally exhausted (from my dad's illness and death) and do not want to go into surgery emotionally exhausted if I have a choice. I said that I would wait at least three months. He said -- don't have surgery because of me. It's OK to wait and watch. I appreciated him picking up that I was leaning toward surgery because he advocated surgery strongly. He believes it is in my best interest. The truth is I'm still thinking. He recommended I come back for and MRI in three months. I'm going to do that. And he recommended I talk with their neuro-oncologist, which I will also do but not next week.

Third Opinion

Today I got a third opinion. With my new information about the controversy in hand, I was able to ask more questions. I liked the doctor, he was easy to talk with. Unfortunately, he could only read the MRI I had six months ago. I'll be returning to him to have him read the newer MRI as well, I think. He said that if this tumor was in his head he would not remove it now. He thought it likely that it's not a glioma. I asked if the reason it's not possible to get the entire tumor out is because, unlike other parts of the body, one cannot take out a "margin of error." This margin of error could be functioning parts of the brain and taking it out could cause brain damage. Not good. He recommended getting another MRI in six months. I left feeling more confident and that I might choose him as my neurosurgeon for waiting and watching.