The path less chosen
I am a 46 year old woman, wife, mother of four (ages 20,19,18,5). I live in central CA. I was diagnosed in Jan. of 95 with a 2cm AN and 100% useable hearing (cannot hear very high pitched sounds). Believe me, I was devastated and wanted to just let someone take control and just tell me what to do, but the cost of doing that was too great.
When I was first diagnosed I saw Drs. from the House Ear Institute to UCSF. Well respected surgeons. I was scared to death not to obey their recommendations but I just could not feel the urgency to proceed with this life altering surgery. So, I told my doctors, "I am going to think about it."
I was forced to enter into battle for my future at a time when I was weakened by being diagnoised with a brain tumor! I found there was no end to the amount of research papers to be read. I read many never knowing which one might hold the key to my escape from surgery. I did this frantically while dealing with my two year old boy and three teenagers!
After I decided on radiation over surgery I needed to find some form of radiation that would do the least amount of damage to the surrounding healthy tissues. I had been scared by the fact that the tumor was so close to my brainstem it was being displaced by it.
I happened upon information about the proton beam at Harvard. I believe that this is the best form of radiation available today. The proton beam has a very low entrance dose and NO exit dose. It is a very clean beam that does not drop "seeds" along it's pathway. It can be shaped it match the shape of your tumor. It is fractionated out into 30 doses thus giving the healthy tissues it encounters a chance to recover. I found out they treat AN's. I was ready to head to Boston! I then found out that the only hospital based proton beam in the world was located in Loma Linda, CA. What a blessing for me!
So, after much research I chose to be treated with the Proton Beam at Loma Linda University Medical Center. It was a series of 30 treatments given over six weeks, fractionated out to give the healthy cells a chance to recover. I was beamed from three different angles. My last treatment was on Jan 8th, 1998. My first MRI will be in July. I am doing just fine. I know I made the right choice.
I wish I had someone to talk to at the time I was searching for alternatives to reassure me that the "path less chosen" was not death dealing! On the other hand, since I was all alone, I had to be thorough in my research and thereby I came to better understand the procedure I chose.
My doctor at Loma Linda reassured me that the proton beam had been used for twenty years to treat brain tumors of various kinds and that they were in the business of treating cancer not causing it. She said that if there had been a series of radiation induced cancers that they would have been closed down. The machine at Loma Linda costs about $84 million. It took a team of Drs and physicists about 4 years to build. Dr. Wilson who built the original back in 1947 was excited by the fact that it was so well suited to handle the delicate tissues of the brain. This machine is not well known because your average hospital cannot afford one. Gamma Knives are much cheaper. Also I found it interesting to know that 75% of the patients being treated at Loma Linda are prostrate cancer patients. We have all heard of the morbidity of that surgery!
Harvard and Loma Linda are doing a research study on AN's. They are going to follow me for years. They have a special department that does nothing but keep track of people in the event of name changes etc. I was given I schedule to follow for the next nine years. I hope that enough people with AN's are treated by them to keep the study going. Without enough patients the study would not be valid. I have read postings recently about the need for research on our type of tumor. There is a study going on now. I hope it is supported.
Last Edited: Friday, November 01, 2002