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 Janimac and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
Like you, I've had two totally unrelated cancers and I don't think there's anything specifically we can do to stop us getting any other type of cancer apart from leading as healthy a lifestyle as we can.
The online community is divided into different support forums and I can see that you've already found and joined the eye cancer forum which is a great place to ask questions, share experiences and get support.
When you feel ready to post there, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
To save you typing this all out again, just copy and paste it into your new post in the eye cancer forum.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hi,
Thank you! yes I'll take your advice and post in the eye forum and update my profile - that's all really helpful.
So sorry to hear you also have had 2 different types of cancer, I hope you're ok.
Thanks!
Yes, I'm all good at the moment thank you.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007