Brain Surgery: Your Life As You Know It Is at Stake

Take your time.

• Even if you are in the emergency room -- find out if surgery is essential to keep you alive right now. If it is, have brain surgery.
• If not, take the time to visit at least two neurooncologists and two surgeons from different institutions. Even if you have to travel.
• I have been amazed at the difference in focus and recommendations.
• What you learn could dramatically improve your quality of life and your length of life.

I met a woman at the brain tumor conference (referred to briefly below) whose husband was in an emergency room and they were recommending surgery. He said no. His tumor has been watched for the last 11 years and has not progressed. He has not had surgery. This experience does not apply to everybody...

Low-grade Glioma and Brain Surgery: Considerations

Low Grade Glioma-- shall I have surgery? Some thoughts and ideas I encountered along the way:

• Are you sure it is a tumor? Doctors can differ. MR Spectroscopy is not real reliable yet at distinguishing between non-tumors and tumors.
• Is it possible to remove 100 percent of the tumor? (Not 100 percent of tumor cells -- they're always some cells that leave the tumor and travel to other parts of the brain)
• If so, is the surgeon you are considering capable of doing this? Find out exactly how they ensure that 100 percent of the tumor has been removed prior to completing surgery. Do they check it with MRI during surgery? What is their track record in 100 percent removal when looking at MRI scans after surgery? (What can look like complete removal during surgery can turn out not to be.)
• Removing less than 100 percent of the tumor does not appear to improve either long-term survival or years until the tumor progresses to a grade III (or IV I suppose). It is possible, I never explored this myself, that if it is pressing on something (or very near to something) such as motor skills, language skills, etc. that there is a benefit to surgery. This would be something to discuss with doctors.
• Radiation is full of side effects. This is because they apply it to an area much larger than the original brain tumor to try to kill the small tumor cells that leave the tumor itself. Normal brain cells can be damaged by radiation therapy resulting in permanent loss of functionality. I have noted problems that can happen in the frontal lobe. A different set of problems can happen elsewhere.
• Younger people are starting to have chemotherapy before radiation. Chemotherapy works better for some types of low-grade tumors than others. Frankly, if younger people are doing this it seems to me older people my want to try this well...
• A perfectly reasonable treatment for low-grade glioma is to wait and watch. As one doctor said, the first tenet of medicine is "First, Do No Harm."

My Doctor's Visit

I was really scared on October 7, 2004, the day I went for a second opinion from a second neurooncologist. I awoke at 4 AM and stayed awake for three hours. Did you know that Coach is on at 5 AM? I think I found West Wing on at 6 AM as well. I was sure surgery would be the recommendation and I was both okay with that and terrified. A finally fell back to sleep for 2.5 hours.

At midday, my friend and I started out for the Medical Center, carrying MRI scans and medical notes. I was first seen by a resident who took a thorough history and did a neurologic exam. I passed, as usual. Then he left for a while.

The doctor and the resident returned and the doctor shared that the two of them had been conferring on my case. He said given my goals of retaining my cognitive and interpersonal abilities (see more below), his opinion that it may not be a tumor, the fact that I'm having no symptoms, and the risks that surgery would impair my cognitive and interpersonal abilities their joint recommendation is to have no surgery. HAVE NO SURGERY. Get periodic MRIs, perhaps every six months (I am on a four-month schedule) to keep an eye on it. That is prudent. And that is all.

The tumor (or lesion) was an accidental finding. She said I would have been better off not knowing about it. She also suggested that I had enough information now to make a decision.

And I did. I decided not to have surgery. It really helped to have clear goals to share what the doctor. It really helped to have clear information about the potential for brain damage from brain surgery but I obtained by going to a brain tumor conference. All the other doctors by talk to about this gloss over the problems. I wanted and needed to truth. And I trusted this doctor. I did not feel pressed in any way. I appreciated his approach -- starting from first, do no harm. I trusted that all factors were considered and if surgery was best for me it would have been recommended. The doctor was willing to pull everything together and present me with a recommendation that I could understand. And then he offered me time to ask questions.

At the other institution I worked with both the neurooncologist and a neurosurgeon. The neurooncologist would not talk about side effects from surgery -- he wanted me to see the surgeon. The surgeon is almost impossible to talk to and not a man I trust because he pushed surgery and acted as if they would be no big deal -- I'd be recovered in two weeks and mentioned no side effects. This just did not seem believable. And, on my second visit he hardly let me ask my questions. He simply referred me on to the neurooncologist. It was difficult for me to obtainuseful information in this setting, information upon which I could base a decision. In August my case went to the tumor board and they leaned toward surgery -- primarily because I am 50 and things can "go wrong" more quickly when you're over 50. A small leaning, not a recommendation for surgery.

I thought the first place was the best place to go. And I did learn a lot there. It was definitely a place to consult with. And I had obtained other second opinions -- but I felt the same kind of pushing at the second doctor visits. His strong recommendation was: do not have surgery. However, he did not explain why to my satisfaction and recommended MRIs annually. This felt inadequate, I wasn't sure I trusted his judgment. Alot can happen to a brain tumor in the year. And I would rather have changes caught sooner rather than later. I consulted a third doctor who also recommended against surgery -- but he misread the MRI (thinking the tumor was on both the left and right side of my brain) and was not aware that there is a 15-30 percent chance that a tumor that does not take up contrast could be a grade III. Not enough trust there either. I later learned that the fact that it had been six months, and then nine months with no change brought the chance of a grade III down to very very low. And even lower if it's not a tumor at all...

I was still very unsettled about whether or not to have surgery. It was a very good idea to go consult with somebody else. A very good idea. I found a doctor I trusted and who could pull together the information so that I could understand the reasons behind her recommendation.

Deciding not to have surgery in May is the best decision and I have ever made in my life.

Approach Brain Surgery with Care

Being told I had a brain tumor was the scariest thing that ever happened to me in my life. The first doctor I saw advised brain surgery. The second was opposed, strongly opposed. And I was totally confused. And I kept asking -- what will be the impact of removing a tumor in the right front alone? Will it affect my feelings? My ability to relate to others? I was told there would be no impact, maybe a bit of impact on my personality and anger, and I never really got clear answers.

Then I went to a brain tumor conference and heard a neuropsychologist speak. She went through possible impacts of damage to various parts of the brain. Radiotherapy can cause this damage. I also learned that surgery can as well, even if there are no complications. She pointed out that not all changes may happen as a result of damage.

• Frontal Lobe Damage Personality Changes:
• Childlike or immature behavior
• Socially inappropriate behavior, such as saying things that are true but that people normally keep to themselves
• Impulsivity
• Problems with judgment, such as around money management and in dealing with other people, etc.
• Lack of sensitivity to others feelings, i.e. empathy
• Disinhibition
• Flat affect
• Can learn and store information; hard to retrieve
  
• Frontal Lobe Damage Cognitive Problems:
• Reduced attention and concentration
• Problems planning and organizingeasily distracted
  Trouble getting the main idea
• (left brain) Naming or word finding difficulties
• Can do concrete thinking but not more abstract, see concrete meetings only
• Reduced mental flexibility
• Lack of awareness of deficits: forget that you don't know how to do things above. It then takes a second person to remind or to do this things for you. In the more extreme versions, it is possible that the person has lost the ability to learn.
• (Right brain) Awareness of change is reduced [I think I got this right]
• are you Chemotherapy can cause subtle cognitive problems

I spent two days wrapped in emotions of terror upon learning this. Both at work and my personal life I use high-level cognitive skills, communication skills, empathy, ability to form heart connections, my judgment. I have a goal of becoming a Nonviolent Communication (Www.CNvC.org) Trainer -- this would not be possible if I lost these abilities. I would lose the core who I am.

Out of this terror I came up with my goals for living with what I thought was a brain tumor. For as long as possible I want to:

1. Maintain my current high-level "personality," i.e., ability to navigate political situations, excellent communication skills, empathy, and ability for continued personal growth.
2. Maintain my current high-level cognitive skills.

I then made an appointment with a neurooncologist I had heard speak at the conference. When the day came for my appointment I was super scared. The doctor looked over all my previous records and previous MRI scans and gave me her recommendation -- to meet your goals given your medical condition do not have surgery. Surgery, even if there are no complications, can result in losing personality/cognitive skills.

Furthermore, the doctor was not sure I had a tumor. A tumor has clear edges -- mine does not. If it were taken out normal brain tissue would have to be taken out around it, increasing the chances of surgery side effects. It's highly possible that the lesion is something I was born with, or... I forget the other possibilities.

As soon as the doctor left the room I knew I had made my decision. I'm not going to have surgery. I'm not going to live my life in fear of a brain tumor. Oh get my periodic scans every 4-6 months, take care of myself because I want to anyway, and IT'S OVER.

Your story may turn out different. Because of the medical facts surgery may be the best choice for you. I encourage you, based on my experience, not to take a single doctor's opinion to have surgery.

Take your time. Even if you are in the emergency room will find out if surgery is essential right then. If not, take the time to visit at least two neurooncologists and two surgeons from different institutions. Even if you have to travel. I have been amazed at the difference in focus and recommendations.

If you have a grade III or grade IV tumor, surgery is your best hope if the tumor can be removed.

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.

Healing Journeys

I went to a wonderful conference called "Cancer As a Turning Point."  It was about healing.  Healing journeys presented the conference, and it was free to all participants :-).  I gained a sense of hope and strength from being in a large auditorium with many other cancer patients and survivors and learned about new ways to think about an approach cancer.  They did not say "you caused the cancer."  They did not say "this will cure your cancer."  They did say "this will help, maybe a little maybe a lot."  They have a Healing Journeys web site with tapes of past conferences (I bought some and am really enjoying them) and other items.  Enjoy.

Three-day Break

I've just been off work for three days, recovering from the stomach flu.  After the initial "events" it was really wonderful.  The first day all I can do with sleep -- not do anything, not think about anything.  The second day I watched TV and slept.  The third day I was up in about more and feeling stronger.  Today I go back to work.  What a blessed break from thinking about the cancer, from doing doing doing.  I saw that my thoughts have been going fast fast fast fast fast.  Have I slept enough?  How I worked enough?  Am I doing the right thing?  And on and on and on...

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.