Eye Cancers (Retinoblastomas) Support Group
Retinoblastoma is a cancer of the retina. Development of this tumor is initiated by mutations that inactivate both copies of the RB1 gene, which codes for the retinoblastoma protein. Until recently the only treatment was to remove the affected eyeball before the cancer spread. Chemotherapy is the treatment of choice for most unilateral cases.
Hello there,
Writing from BC, Canada,,
I am writing in regards of info for my dad. He's 74 soon, and has just gone through removal of his left eye because of a "large" tumor in the back of his eye. He was diagnosed with ocular melanoma this month and the quick decision to take the eye was done in hopes of reducing possibility of the cancer spreading . They sent his tumor away for analysis. Which cost him $1030 for the testing which is exclusively done in the USA. He will receive the results on Monday.
I am having a hard time with this topic because my parents just aren't understanding that this tumor is cancerous! They keep saying - they will find out if it is benign or malignant.,, but the testing is actually to see its likelihood of metasticizing. (spreading). The problem is that dad didn't go for eye exams regularly. So who knows how long this has been there! He went in because he was suffering from a bit of frontal vision loss and his eyes felt really dry. (to the point that he was trying to add eye drops to moisturize) .
I guess I am writing because I am looking for those of you who have/ or are going through this. Any advice, or info sharing is appreciated. Its a very rare cancer they say- so not sure if many people will comment.??
Thanks in advance for just taking the time to read my post.
Writing from BC, Canada,,
I am writing in regards of info for my dad. He's 74 soon, and has just gone through removal of his left eye because of a "large" tumor in the back of his eye. He was diagnosed with ocular melanoma this month and the quick decision to take the eye was done in hopes of reducing possibility of the cancer spreading . They sent his tumor away for analysis. Which cost him $1030 for the testing which is exclusively done in the USA. He will receive the results on Monday.
I am having a hard time with this topic because my parents just aren't understanding that this tumor is cancerous! They keep saying - they will find out if it is benign or malignant.,, but the testing is actually to see its likelihood of metasticizing. (spreading). The problem is that dad didn't go for eye exams regularly. So who knows how long this has been there! He went in because he was suffering from a bit of frontal vision loss and his eyes felt really dry. (to the point that he was trying to add eye drops to moisturize) .
I guess I am writing because I am looking for those of you who have/ or are going through this. Any advice, or info sharing is appreciated. Its a very rare cancer they say- so not sure if many people will comment.??
Thanks in advance for just taking the time to read my post.
I live in the UK where I run OcuMel UK, a charity supporting ocular melanoma sufferers. My father died of the cancer so I completely appreciate where you are coming from. If you want to email me you can do so via info@ocumeluk.org or you can find more information on www.ocumeluk.org.
Other places to look are the US Melanoma Research Foundation's CURE OM project www.cureom.org. They have a forum you could post in to find other Canadians. There are also Canadians on the ListServ OCU-MEL email list.
Hope this helps - let me know if you need anything.
Good luck
Kathryn