Hi
Let me begin with my background. I had retinoblastoma, a type of eye cancer, when I was a baby. I had my right eye removed and successful radiotherapy to treat my left eye. I had relatively useful visoin in my left eye for 30 years and have had a pretty decent live.
Now in my early 30s, I noticed a lump and swelling above my left eye early last autumn. Even with my previous history, it took months to get anywhere with scans etc.
I was diagnosed in February with lacrimal gland adenocarcinoma after a biopsy. Initially they suggested they might be able to save my vision but I never really thought that was realisitc. I was eventually advised to have surgery in March to remove my left eyeball and wider area, which has left me completely blind but it was hoped would get rid of the cancer, at least for the time being.
A positive margin was found and I was advised in April that I would need to have 6 weeks of radiotherapy. I was meant to have it done in London but was eventually transferred nearer to my home to reduce travelling.
They decided to do a MRI scan first and found that there were still visible signs of cncer there, even though the surgeon was confident he'd got rid of everything visible 8 weeks ago, which suggests it might have grown back quickly. A CT scan didn't show any sign of spread to other parts of my body.
I was advised that radiotherapy was not normally effective on this type of cancer and the chances of it curing it or even giving it long-term control were slim. The limited reading I have done elsewhere suggests this i quite a rare and normally aggressive cancer and even with removal of eye and radiotherapy survival is ofte three years or lessn.
I know there have been medical advances in techniques to control cancer but I'm not sure if any will be suitable for this type.
There's the small possibility of a second surgery but they think it might be too extensive.
I'm due to find out today whether they will advise consideration of furhter surgeyr or we jump straight to radiotherapy.
I find the nights the hardest bit - I've woken up by 2 for the last week or two and not got back to sleep, hence why I thought I might as well type this!
Does anyone have advice for questions to ask or how to try and process it all? I largely figure that there's no way of knowing exactly what will happen when and whilst I'm here I might as well try and get on wih life and carry on as best I can - but it's not always so easy!
