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ocular melanoma

ssaylor
Posts: 2
Joined: Jan 2014

Almost3 years ago I was diagnosed with ocular melanoma. I was good about 2 yrs straight for going to my check ups but the last year I haven't gone and am having some simular symptoms again. Does anyone know where I can find information on statistics after being diagnosed ex. Chances of it spreading and what to look for?

PiecesOfKristy's picture
PiecesOfKristy
Posts: 2
Joined: Feb 2013

Hi!  I was recently diagnosed with OM.  My tumor was too big for radiation therapy so my only option was enucleation (removal of the eye).  My tumor was first found in April 2014 and I had my left eye removed on June 26th.  I will be going for my PET/CT scans on July 22nd and a follow-up with my oncologist on August 1st.  Then, hopefully, my prosthetic eye by the end of August.

I understand your anxiety - I have my pathology report back and am concerned what my future with Melanoma will be.  I've been researching this beast (OM) since the day I was told about it.   I started a blog about my journey and created a page of resources specifically for OM with links.  

http://pieces-of-kristy.blogspot.com/p/ocular-melanoma.html

My best advice would be to join the Ocular Melanoma Discussion List.  You can search the archives for answers as well as posting your questions and concerns to a group of more than 400 people who have OM.  Just click the link below and click on Subscribe in the right sidebar.  You will have to confirm your email before being allowed to post.  You will need to create a password and confirm it before you are allowed to search the archives.  It's free and only take a few minutes to get started.  

http://listserv.icors.org/scripts/wa-ICORS.exe?A0=OCU-MEL&t=&X=F8134D7BB8A2B62111

Please feel free to contact me if you would like to connect more personally through email or Facebook.

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