There is no doubt in my mind that the first time someone is told there is something wrong with their health, fear and axiety controls every thought. For me, September 27, 2012 was that day... My wife, 34 years of age, was told to see a retina specialist who completed a test and told us there is a "large" tumor behind her left eye. Just like that, my entire life has changed. She has been very positive and I have been full of emotions. I keep thinking about what will happen, and most important, our life without her.
I apologize to her many times that day for feeling so down, depressed, and disoriented. I would die without her. We were told to see Dr. Carol Shields at the Will's Eye Institute in Philadelphia to get additional details. I was so scared because I didn't know what to expect. I kept thinking how unfair this is, but in the end this can happen to anyone.
I'm sorry for starting my introduction with doubt, fear, and lack of fortitude, but typing how I felt and hoping someone has some guidance on how to deal with my axiety and fear will be tremendous. Oh God, I just love her so much. Before going to see Dr. Shields, I was reading about this for days. I was only hoping for the best and tried to maintain a positive attitude for her.
I went with my mother-in-law, my mom, and my wife to Wills Eye Institute today. After spending the entire day there, we found out the following:
Ciliary Body: Yes
Of course, this is not what we were hoping to hear. She is scheduled for surgery next Thursday to have her eye removed. I'm fully aware the significant thickness, diameter, and ciliary body involvement are definetely risk factors. With that said, I need help with the following:
1.FNAB vs. DecisionDx-UM: The Wills Eye Institute offers the fine needle aspiration biopsy to check for monosomy 3; however, the DecisionDx-UM seems to be more accurate. Also, the FNAB takes 3-4 months to get the results. Can anyone recommend which options is better? We truly want to know even though the size and ciliary involvement do not improve the results we would love to see. If we decide to do DecisionDX, would we be ruling any crinical trials Dr. Sato may have in the near future since he is the oncologist and reviews the FNAB with the patient?
2.Scan to check for Cancer: Since she is schedule for next week, we were told to get a MRI, chest scan to rule out the cancer spreading somewhere else. She had her blood work done which came up without any issues, but I know that does not rule out something found during a scan. We live in central New Jersey and the Wills Eye Institute recommended Dr. Sato; however, his earliest available time is January 2013. There is no way we are waiting that long. Do you recommend anyone in the tri-state area?
3.Tell the children: We have a 6yr old very smart girl. We are debating what to tell her. She already knows mommy has something behind her eye and the doctor needs to take a look at it. What are your suggestion?
4.Statistics: I'm a numbers guy. I'm profession is risk management and I rely on facts and objectivity most of the time; however, everything in life is not always black or white. Has anyone know or have any statistics of patients with thickness > 10mm and Ciliary Body involvement that resulted in disonomy 3 or Class 1? The Wills Eye Institute gave me a copy of the "Prognosis of Uveal Melanoma in 500 Cases Using Genetic Testing of Fine-Needle Aspiration Biopsy Specimens" In this report from 2011, there is not a single patient with thickness over 12.1mm and size over 20mm. However, the "Collaborative Ocular Oncology Group Report Number 1: Prospective Validation of a Multi-Gene Prognostic Assay in Uveal
Melanoma" report from earlier this year shows some patients with thickness/diameter and ciliary body listed in Class 1 where the range covers the size discovered in my wife. What are your thoughts or suggestions about this?
I appreciate any feedback. This is a very difficult time. Thank you very much for your support.