Gamma Knife Radiation Treatment for Brain Tumor

Before Radiation

Early this morning I arrived in Dallas to have my first brain radiation treatment. I was told when I met with the oncologist radiologist this would be a one and done procedure. Earlier this week his nurse called me and said I might need two treatments. To my surprise this morning, after getting the MRI, I was informed I would need 5 treatments. The tumor is 2mm from the optic nerve and we don’t want to risk damaging my vision. It seems like the tumor must have grown since the last MRI a few weeks ago as it wasn’t near the optic nerve then. 

I’ve never had a problem with getting an MRI until today. I haven’t had that many but when they put the mask frame over my face and slid me in I panicked. I was having trouble breathing and pushed the call button multiple times. The guys came in and I was crying. I asked if they could please find my husband. I wanted Collin to be there. The tech offered a mirror on the mask shield so I could see out when I was in the MRI machine. That helped a whole lot. Collin came back and assured me that I’d be okay. I only needed one with contrast so it was 15 minutes.

Then I went to get the worst mask of my life made. It was a warm plastic thing that they molded tightly to my face. The ends have bolts that they bolt to the table I lay on. I cannot move my face at all. Blinking is a struggle as the mask covers my eyes some. I cannot talk because my chin is securely in there and it’s covering part of my lips. I’m laying on a hard board. It was rough getting fitted for it.

Then I met briefly with my doctor who said I’d need 5 radiation treatments and they’d be around 20 minutes each. That ended up not being true. We went to eat breakfast with my dad and two friends who came to support us during this treatment. Meanwhile my doctor met with the neurosurgeon to go over my treatment plan. I barely finished eating breakfast when they called me back to begin. The nurse told me that the treatments would be 35 minutes long, not 20 minutes. 

Shortly after laying down on the table the nurse started tightening the mask to my face. All of the sudden I couldn’t breathe, my heart was racing, I could only grunt. I told her through grunts to get me out of there. She did and I sat up in tears. I got my shoes and ran crying to the room where Collin and my dad were sitting. I told them I didn’t think I could do it. I don’t like things on my face, covid masks used to really bother me and they were loose and airy. This mask reminded me of some of the things I witnessed in torture museums in Germany. The nurse came in and said let’s wait 20 minutes and try again to give the medicine time to fully absorb. 

20 minutes later I was back on the table. I was deeply breathing in and out through my nose praying I could make it through this. They did a CT scan then the gamma knife machine opened up and I went inside. I was able to listen to music and asked to listen to Christian music. It was tough, I have never been claustrophobic until being in my 40s. I was super uncomfortable to say the least. My husband sent a message requesting people to pray for me. My head hurt against the back of the table. My face hurt from the mask pressed firmly on it. In fact, afterwards I had a Chick-fil-A fry face, aka Jesus fry face. It was really one of the worst experiences of my life. I will be so grateful when this is all over. 

I appreciate the prayers and am happy to be done with the first treatment. The prayers really helped. I counted the songs as they played to try and track when I could be released. I’m grateful that Collin brought me, Dad came, Randall, and Tarron came as well. 

Isaiah 41:10 states, "Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand".

Before my panic attack - this is the Gamma Knife Machine

MRI Machine

The Awful Gamma Knife Mask - it goes on extremely tight for treatment

Chick-fil-A French Fry Face after treatment

My tumor that has grown close to the optic nerve...grrr. I hope this tumor dies!

The room where I had a runaway bride/runaway patient experience

Heading to treatment

Markings of a hopefully successful treatment

Radiation Options and Decision

After meeting with the first oncologist radiologist, I went home and cried for the next two days. I also decided to get two more opinions. Having a brain tumor is not fun. Brain radiation is serious and there are risks and side effects that could occur and will occur. Knowing that it most likely will only be a matter of time before my pituitary gland starts failing and I'll need to be on hormone supplements is quite depressing. I'm going to share my Facebook update and and then a 4th opinion as well. My advice for any medical care is that if you're uncomfortable with something, get another opinion if you can. The 3rd leading cause of death in America after heart disease and cancer is medical errors and injuries. Not only that but side effects from medical treatment can be lifelong. Even if someone doesn't die from medical injuries they could have permanent damage done. Please say a prayer for me if you think about it. I have a pretty big decision to make and I'd like to make the right one.

At my 3-month post check-up from my brain tumor surgery, we discovered I have a pretty large residual tumor. I've been referred to get radiation to hopefully kill it so it will stop growing. I've seen three different oncologist radiologists. They each have a different approach. There are always side effects to radiation treatments, usually they are long term but some are short term. Radiation to the brain is scary to me. My tumor is benign, thankfully. However, that doesn't stop it from growing and if it continues to grow surgery would be needed again. I feel better than I have in many, many months. I am not on any medication but after radiation there's a high probability of needing hormone replacements for life. This is not a door I wanted to walk through so I'm really having to try and give it to God. Lots of prayers and studying. Several close friends have been praying for me but I'd love more prayers if you think about it. I want to be as comfortable and confident as possible going into this.

Here are my options.

Doc1: 5 treatments with TrueBeam (this is similar to Cyberknife) every other day. He told me if I wait too long he may not be able to offer me 5 treatments and would have to up it to 25 treatments for example. He seems like the most conservative of the 3. I left his office and cried for the next 2 days. He said he almost guaranteed my thyroid hormones would be damaged.

Doc2: 3 treatments with TrueBeam, same dose as doc 1 but done in 3 sessions vs 5 to make sure we kill this thing. (I thought she had Cyberknife but they upgraded their system and TrueBeam seems to be the new machine in this area). She also said she'd prescribe a steroid to take before treatments. She said doc1's recommendation was puny. But are higher doses of radiation really better or safer? I really liked this doctor.

Doc3: He's in Dallas and thinks he could do 1 dose with Gamma Knife. It would most likely be a one day trip. This would be the highest amount of radiation which long term isn't always good. This doctor said the other recommendations would have similar outcomes. Gamma Knife radiation has been around the longest and I wouldn't have to have the bolts in my head. This doctor was very knowledgeable as well.

If this were you, what would you choose?

On another note, a nice man from Nigeria told me he could cure me with some roots for only $100 USD.

Doc4: I decided to seek a 4th opinion from my primary care physician. He told me if it were him he'd go with option 3, the Gamma Knife in Dallas. His reasoning was very similar to my reasoning of why I went to Dallas in the first place to talk to the doctor. The gamma knife is the oldest radiation for brain tumors. The fact that they recently stopped having to place bolts in a patient's head makes it less barbaric in my opinion. I think if that was what I'd need I'd go with option 2. The Dallas doctors are excellent and treat more of my kind of tumors than anyone else in the area. He also said it wouldn't hurt to take the roots from the guy in Africa if I wanted. He read over what they were and said it couldn't hurt. Embarrassingly I tried to purchase the roots from Africa and paypal blocked my payment. The guy in Africa told me I could go to a gas station and get a gas card to send money that way. Something didn't feel right so I'm not going with the roots. I take several supplements for brain health and will continue drinking smoothies and fresh juices as well as walking to give my body the best chance possible.

In the end, I pray that God is glorified through this. Having a brain tumor was never on my list of wishes. However, God is faithful and I'm trusting in His plan for my life. Please pray Jeremiah's prayer of deliverance for me and with me. This is such a great verse to pray over anyone going through issues needing to be healed from. 

Jeremiah 17:14: "Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise."

3 Months Post Op from Brain Tumor Removal Radiation

The past few weeks have been very busy with multiple doctor appointments and the MRI scans. Most of my life I have been healthy and able to avoid going to the doctor. I'm mourning that life. I love and appreciate doctors but I do not enjoy seeing them for health reasons. I have a number of doctor friends and enjoy their company but that is different. 

The positive news is my vision has been restored since removing the pituitary tumor. Praise God for that! The follow-up with my endocronologist went well, my blood work is great and I was able to get off the steriods. Another huge praise to God.  Unfortuantely, I have a residual tumor and it's quite big. It's 1.8x1.4x1.4cm. My neurosurgeon was concerned about the residual tumor and I knew since the beginning that radiology was a possibility I just thought it would be years away. Due to the size I was referred to an oncologist radiologist.

This afternoon I met with an oncologist radiologist. Oncology rooms are very depressing. Cancer sucks and there's not a nicer way to say that. Thankfully my brain tumor is not cancerous, however, it's an agressive tumor. Benign brain tumors are like spongues and when they start growing they grow like a spongue and want to fill the space they are in. This can cause issues with other areas around where the tumor is growing such as the pituitary gland, optic nerve, carotid artery, all my case. Radiation is not something I want. I feel great, my labs are great, and this is such a difficult decision. The doctor said if I do the radiation now, we can do 5 sessions. If we wait 3-6 months and the tumor continues to grow and/or grows into another area, I might need 25 sessions. What I'm getting is called stereotactic radiosurgery that uses multiple beams of radiation to target and destroy abnormal tissue in the brain. I have an appointment on Thursday to get fitted for the mask, get imagery done, and some labs. 7-10 days after that I will have this treatment for 5 days every other day. The most common side effect is hair loss. I wish I wasn't vain but I guess I am because the thought of losing my hair is awful. I won't be able to wash my hair but once a week for two weeks then water for two weeks after.

Please say a prayer for me. I am scared. There are long-term effects of radiation including my thyroid being destroyed. That's another likely side effect. I'm really upset about this and am not doing well thinking about it.