Hi all, I was diagnosed with ocular melanoma of my iris in June this year (2024),I'm just turned 52 and live with my partner and son. I quickly had proton beam laser radiotherapy (which was traumatic as I'm generally squeamish about eyes) and had my three month review last Friday. The headline outcome is positive, the consultant said the tumour on my eye hasn't grown since the radiotherapy, however, he also said it's 'too soon' to say the treatment has worked. He said we now go into a process of monitoring and told me 'there are options' if it grows again. More radiotherapy or worst case scenario... take out my eye.
I went to this appointment alone as I wanted to have all the facts before breaking any news to my family. I hadn't even let myself consider I might at some point lose my eye - and I know I also might not, it just felt a bit shocking to hear. The other thing he said was 'this tumour won't ever go away' so it will always look back at me every time I look in the mirror.
I had clear cell carcinoma of the ovary in 2018, I was really lucky, it was an incidental finding while removing an ovarian cyst - the cancer was in endometriosis I had never been diagnosed with, I just thought periods were excruciatingly painful for everyone! I had a radical hysterectomy and the cancer was only stage 1a - it was still a very traumatic experience but I am discharged from gynae oncology now and in remission from that cancer.
There's a few things worrying me, although I am told that the ovarian and ocular cancers are not linked, I still wonder why I have had two cancer diagnoses in 6 years - is there something I can do to stop this happening? I eat healthily, exercise, I work full time I hardly drink - odd nights out and Christmas, I don't smoke or vape... I don't know what else I could do?
I'm worrying now that the fact the tumour in my eye 'isn't going away' is there a likelihood that it will start to grow again? The dr was really vague when I asked about this.
I've been off work for a while now and looking at going back in the next few weeks. The thought of having to speak to loads of colleagues in an open plan office about all of this is making me feel ill. I know I can say I don't want to talk about it but my colleagues are lovely so don't want to be nasty to them, I just know I'll end up telling the same story 20 times and it's all a bit traumatic.
Sorry for ranting, I just thought I'd come here and chat to others who are going through the same thing.
Hi again Janimac and I'm glad to see you've joined the group after posting in New to the Community.
I haven't had this type of cancer, so can't help with your question
is there a likelihood that it will start to grow again?
but I'm sure some of the group members will be along soon to share their experiences with you.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
