Have just been diagnosed with breast eye mets and don’t like what I’m reading Anyone else have this?
Hi 76Ag
I don’t have eye mets but I am at risk of getting them as my secondary breast cancer tumour is in my medial canthus. That’s the bit at the bridge of the nose you might pinch if you had a headache. It is slowly spreading across my eyelid right now and I’ve been warned that it may spread in any direction - my brain, my sinuses, my eye. I also have extensive subcutaneous skin mets on my neck and chin. Fortunately I had an excellent (and unexpected) response to my first line treatment and 2 years 4 months later I’m still on the same treatment.
I do know of someone with mets in her eye but she is in a different forum. We’re quite an unusual bunch! Please know that you’re not alone - there are virtual friends who will understand just how powerful a blow the diagnosis is and just how scary the treatments sound. You may be given radiotherapy which will target those mets and protect your vision. I’ve heard that it is painless and effective. I guess it depends on the location of the mets.
Meantime, unless you have medical or scientific training, I really would advise you to stop reading about it. Dr Google, as it is affectionately (?) known, is not your friend and access to unfiltered information and data is worrying. Easily treated cases don’t make for good reading; people who sail through treatment don’t tend to use support forums - so you end up with a very skewed and scary picture of the condition. I know some people just feel they need to know and understand more but the best move is to write down all your questions, email them to your oncologist if you have that contact and say these are the answers you are looking for. However, I’d advise pacing yourself, not looking for all the information. You have a lot to process, you probably are in knots over this with emotions all over the place. Deal with the diagnosis you have, allow time because a lot is going to change and your knowledge and understanding will develop gradually.
I hope someone with eye mets replies to you. If you need a listening ear, the nurses’ phone service is excellent and may be able to signpost you to other resources that ma help. Wishing you all the best
Jan x
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We hope you’re doing OK with this diagnosis @76Ag. If you want to talk, remember we’re just a call or a click away.
Lucy
I had absolutely no idea that eye mets were a thing. I’m so sorry to hear that you are having to go through this. It’s a surprise that they cannot inject some cancer drugs to help fight this.
Take care x