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.

14 Members

9 Posts

0 Online

mustanggranny 10/12/2013

I posted in the brain cancer support group.....wasnt aware of this group. My husband has to have mir in. November to see if his radiation treatments help stop the growth of a tumor on the optic nerve.He had surgery in 2008 but his vision got worst last march. Its in his left eye. The doc calls it a triton tumor. Its very rare so she says. Anyone familiar with this type of tumor?

deleted_user 10/13/2013

Hi :)

I'm afraid I am going to be of no help to you as I have never heard of a Triton tumor.
I am only just beginning the process of being seen by an Ocular Oncologist, so I have a lot to learn.

I have had surgery on my Optic nerves in the past to relieve the build up of CSF that was causing blindness, but at that time the cause was idiopathic.

Now I am in the very beginning of the testing phase of meeting with an Ocular Oncologist for Retina Cancer, so I haven't done enough research yet, and eye cancers must be very rare, b/c most of my searches turn up results from Wikipedia instead of sites like the Mayo Clinic or PubMed which are far more reliable.

This forum doesn't seem to active, but feel free to post...our issues may be different, but we can still offer support and learn from each other...

I want to wish you and your husband successful treatment, and the best possible outcome.

Cheers to good health,
LuLu

mustanggranny 10/14/2013

Thank you, Lulu for making feel welcome. What is cfs? I will keep you my prayers for postive outcome in your doc visits! :)

deleted_user 10/14/2013

Hey!

I'm sorry for the abbreviation...CFS is Cerebral Spinal Fluid. Cerebral Spinal Fluid often builds up behind the back of the eye in brain cancer and eye cancer patients, and that extra fluid causes the optic nerve to swell which is a cause of blindness for some people.
How's that for a run on sentence? :)

A lot of times Dr's will put a patient on a diuretic (diamox,lasix) or even a steroid like Prednisone to reduce the inflammation and swelling of the optic nerve, reducing the risk of vision loss while they treat the underlying problem.

However, like I said, I am only just beginning to learn about eye cancers, and do not know if the Nevus I have is a Melanoma or just some weird discoloration...a freak thing maybe caused by one of my other DX's

I hope the radiation worked for your husband...please post the results...I know the waiting must be excruciating...
Best, LuLu

maculardegeneration 01/31/2015

It's a rare condition of the eye. Well, having eye cancer is already rare, and that is more rare than the cancer itself. I'm sorry for your experience, but you may want to search and read some articles in this website that I'm using in learning about eye problems, http://www.visionlosscenter.com/ . It helped me a lot in learning about lots of it since I'm a medical student. Even though, I haven't known yet a better information about that said disease, but what I do know is that it's rare and it's a type of eye cancer. Nevertheless, my advice is to have a good faith, and follow your treatment regimen. It can be cured, you just need to believe and have the faith to fight! God bless you.

Join the Conversation