Hello - I am hoping to get the experience of this group to help me evaluate the treatment alternatives for a medium to large sized tumour diagnosed on monday.
I was diagnosed in London by Victoria Cohen. As i've found out in the last four days, there are three options:
- proton beam done in liverpool. Not available for the beams to start until early april (with mask etc made sooner)
- brachytherapy done in London but with a "slow" plaque - estimated to take 11.5 days of the plaque being in place, available c20 March
- removal of the eye - available quickly
I'm really hoping to get the experience of any of you who have had either forms of radiation about the "quality" of the eye that you have post treatment. I don't just mean the percentage vision, i mean the day to day quality of life in terms of eye maintenance, what you experience in terms of complications. Both in the months post surgery and in the longer term if you are lucky enough not to get mets.
I believe that you don't know whether the radiation has killed the cancer cells successfully for 6 months - is that right?
I happen to know someone who has had his eye removed for other reasons - an accident. He seems very happy with his artifiial eye which gives him no issues and he still does sporting activities and drives (albeit rather frigtheningly). He says he now barely thinks about it - tho' he has had it for over 30 years.
Many thanks for your experiences and help.
Seaspirit
Hi, I am a patient. I was diagnosed and treated in Barts 2011. Please, please search the charity OcuMel UK. There are members who have had all the treatments you list and will be able to help you. You are not alone. You can message me any time! Please, please join OcuMel UK and get some help. Cx
Hi Seaspirit,
Welcome to the forum and sorry to hear your news, but glad you are out there finding information.
My Mum was diagnose with a medium sized choroidal melanoma in 2014 through Sheffield so really talking through the experiences she had. With regards to the type of treatment, I think there are lots of things to consider, which can appear to be overwhelming so soon after diagnosis.
My Mum was advised by the consultants at Sheffield that her tumour was at a size and location that only proton beam would be suitable, or she could have the eye removed. She decided to have proton beam. While proton beam has a very successful rate in reducing tumour growth and killing the cancer cells, it does have side effects which should not be ignored. My Mum's tumour was on the nasal side of her right eye and the radiation has caused the tear duct to block permanently so she has a constant running eye which cannot be cured without quite considerable surgery. She seems to be more bothered by this than any slight vision impairment that she has (although this is only very slight at the moment). She has been advised that she might suffer severe slight loss in the future.
This is very much the experiences of one person and there are so many factors that need consideration - my advice is the same as Hovis - please check out Ocumel on line. It's a good source of information about this very rare and uncommon cancer.
Best wishes,
Steve
Hi I am trying to find more about treatments options and consultants for my sister as she has been diagnosed with choroidal tumour originally suspected as naevus. she is so worried and we are trying to find the best options for her as her other eye is not good and she does not want to lose her sight.
Any help or ideas welcome? many thanks
Hi and welcome to the online community
I'm very sorry to read that your sister has been diagnosed with eye cancer.
You may not have noticed when you replied to this thread but the post is over four years old so the posters may no longer visit the online community and you might not get any responses.
Could I recommend that you start your own post by clicking on 'start a discussion' which you'll see near the top of the page.
When you have a minute it would be really useful if you could pop something about your sister's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.
x
Hi
thank you for this post, i think i have started a new post but can't tell? will i receive replies to my email?
I will put some information on the profile as you suggest. many thanks
Hi
No, at the moment you've just replied to an old post. To start a new one, click on 'start a discussion' at the top of the page, give your post a subject heading and then type your message in the main box. Once you've typed what you want to say click on 'post'.
To make sure that you get notifications when people reply, go to 'email notifications from this group', which will either be on the right hand side or bottom of the page, and choose either daily, weekly or every update. I personally have mine set on 'every update' otherwise you won't get immediate notifications.
If you need any further help, just shout.
x
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