Hello there, well I've just come across this group having had a pretty eventful year so far. I was diagnosed with a choroidal melanoma in my right eye late in 2020 and underwent surgery at the amazing Liverpool hospital at the end of December. I received the plaque radiotherapy after removal of the tumour which stayed in place for a couple of days before the plaque was removed and the eye was filled with silicone oil to support the retina and help the operation site to heal.
I should mention that I have a very strong fear of having my eyes touched and so this diagnosis and the subsequent treatment has meant that I have been living my worst nightmare. I've had to dig very deep to get through this and couldn't have done it without my soul mate who I've been married to for over 40 years. However, the recovery went very smoothly and I adapted to the peculiar double vision which has now righted itself. The biopsy of the tumour wasn't good and revealed that it was an aggressive type of cancer and this has meant that I've been referred to an oncologist. Scans and tests have shown that there is no sign of cancer anywhere else in my body so far.
The next procedure was at the beginning of May when I returned to Liverpool to have the oil removed and cataract surgery and again this has gone well. However, there was a blow I wasn't expecting when I returned for a check up last week and that is that there are some worrying pigments on the retina which could be another melanoma or some simple microphages which are of no danger. It's been suggested that they have another look in 3 months but my mind is now in turmoil. Because the tumour was on the limit of size to be operable, and the biopsy shows the tumour was aggressive I feel that the odds are stacked against me and I feel that the result is going to be inevitable and I will lose the eye.
I'm not sure I have the strength to wait until September and feel that maybe I should go ahead without delay and request that I get it over with. I'm terrified at the prospect of losing my eye but there's a 50/50 chance that it could be OK.
That's where I am at the moment, thanks for taking the time to read my story.
Hi Barneymum and a very warm welcome to the online community
Thanks very much for taking the time to share your journey with choroidal melanoma with everyone in the group. I'm sure it'll be really useful to new people here who want to know what to expect.
Although I haven't had the same type of cancer as you, mine was a skin melanoma, I do recognise all the uncertainty that comes with having a cancer diagnosis and how difficult making decisions can be. I wondered if you could perhaps talk through with your CNS whether to go ahead immediately with an enucleation to see what your consultant thinks?
Do come back and let us know what you decide.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Thank you so much for sharing this.
It can't be easy and lots of decisions.
I too have always struggled with anything to do with my eyes!! So much so, that as a child I made the decision to not donate anything involving eyes when I became an organ donor.
For 12 years I have known about a very large choroidal nevus on my right eye, with the optical disk goes through. Check up every year and no change. Routine appointment early this year with opthalmologist and told it is growing.
I totally get the stress and need to research and thankfully found this group. Now referred to Glasgow specialists with a wait and see diagnosis. Regular routine monitoring appointments now.
Thinking of you and as with everyone here, always lots of support in this group.
