Eye cancer

A place for people affected by eye cancer, including ocular melanoma, to support one another, ask questions, and share their experiences.

Newly diagnosed

orlando man
Posted by

Hi all

I have recently been diagnosed with eye cancer and have been told that the tumour is too large for treatment and I have to have my eye removed. The date I have been given is 25 June . Having read some of the previous messages I am worried that I have to wait so long for removal. I have also been told that i will need a full body scan to see if it has spread and a liver ultrasound - this is something that I think i will have to have done every 6 months. I had my diagnosis last Thursday and when i chased the cancer nurse today was told that they have not yet referred me to Barts for the scans yet!. There will be a full team meeting tomorrow to discuss my treatment before they do anything. I am frightened that this has spread, yet the Drs do not seem to want to hurry things along.

i note that others received surgery much quicker than i have to wait- has that been everyone's experience?

i have also read about the 50% of it spreading - this was not explained to me at all and I would really appreciate any advice anyone can give me. thanks 

geezgeez
Posted by

I completely understand it can be very distressing. My dad has metastasis from a chorodial melonoma. 

Can I ask what size your tumor is?

In my honest opinion as to what I understand about the cancer, although I would very much want the tumor out of my eye as quickly as possible I think 4 weeks should not make much difference. If its going to spread then its going to spread.

You are correct that 50% of eye cancers do spread which is mostly to the liver, but can also on rarer occasions also spread to the bone and lungs. This 50% is over a 15 year period. 

In terms of the fully body scan it is rare for metastasis to be present at the time of diagnosis of the eye cancer but of course can happen. 

I would recommend you look into genetic testing of the eye cancer and it is something that should be offered by the clinician team. As you are having the eye out you can get the tumor genetically profiled which will give you a likelihood in terms of percentage of whether the cancer is likely to spread. 

Also what is your financial situation like? There are private clinical trials available at the moment which are designed to try and prevent the spread of the cancer once diagnosed. I think this would only be worthwhile thinking about if the genetic profile came back as high risk. 

latchbrook
Posted by

Hi  and a very warm welcome to the online community

I'm sorry to hear that you've been diagnosed with eye cancer and that you will be having your eye removed shortly.

Whilst I don't have any experience of this I had noticed that your post had gone unanswered. I thought that by replying it would 'bump' you back to the top of the page and hopefully someone will be along to share their experiences with you.

In the meantime you may find this article on eye cancer informative if you've not already read it. 

You could post this question in the ask a nurse section where a specialist nurse will aim to get back to you within 2 working days. Alternatively you could give the Macmillan Support Line a call on 0800 808 0000. It's free to call, staffed by trained experts and available between 9am and 8pm Monday to Friday.

Best wishes for your upcoming surgery x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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orlando man
Posted by

Hi Geezgeez

Thanks for coming back to me. My tumour is 17mm by 13mm by 12 mm, which I understand is very large. I have been receiving treatment for MS at St Thomas' hospital for the last 8 years, having regular eye tests, which has made the discovery of this tumour all the more shocking.

I will ask for genetic testing to be carried out. Do you know where i can find out more about the private clinical trials?

geezgeez
Posted by

The specific trials or “treatment” in regards to theoretically reducing the chances of cancer spreading from the eye are HDAC inhibitors. I am not sure where currently in the UK you can get this treatment but if paying privately I’m sure it would be available. 

I recommend contacting Ocumel UK who are a eye cancer charity who would be able to advise. Also bear in mind I have no experience or knowledge as to the success of these trials but I do know it’s being looked at by various medical oncologists who have an interest in ocular melonoma. 

Also take a look at http://www.myuvealmelanoma.com/ which gives excellent information on genetic testing. 

You will be given scans every 6 months but based on my experience with my dad this is not enough. My dad had a scan in November which was clear, by April he had metastasis in his liver, lung and spine. Of course unless your genetic testing comes back as low risk. What some people with OM do is organize their own blood tests every 3 months to look at serum levels which can indicate metastasis. 

I would also recommend the various Facebook support groups where people discuss their experiences. 

Ocular melonoma is a very scary cancer but what you have to remember is for every person that it does spread there is at least another person who will never be bothered by it again in their life. There are also more advances than ever around treatment for this cancer that has metastasized. 

You may read various horror stories about the cancer spreading to the liver. If it does spread to the liver then often the prognosis is poor, but if caught early then there are so many more options than if caught too late. That’s why I would recommend your own survellience with the blood tests alongside the 6 month scans. 
orlando man
Posted by

I am sorry to hear the news about your father- it really is an awful disease.

thank you for taking the time to respond and the helpful suggestions which I will follow up on

Island fling
Posted by

I was diagnosed late last year and had surgery 4 weeks later, I think that’s pretty normal timescale. I don’t think a couple of weeks delay will affect the long term outcome. There is no prediction with this awful disease. You have had terrible news but try and remain positive, yes some people don’t have a good outcome but many others live a long healthy life. Try and find out as much as you can but at the same time it’s no help to get strung up on numbers and satiscits, if it's going to happen stressing about it isn’t going to make any difference. Now, six months on, I’ve adjusted to having one eye. I get tired and sometimes sad and cross, but this dam disease is not going to stop me doing the stuff that’s important to me. Best wishes.

Andalay
Posted by

Hi there Orlando Man and welcome xxx

I would echo most of what others have said.

The timescale before is not usually an issue. It’s a slow growing cancer. My tumour was a similar size to yours when diagnosed, and like you, I’d been having regular eye tests. Which made it even more shocking when the consultant told me it had probably been growing undetected in my eye for 5-6 years! The main thing that would make a difference at this point is if the primary tumour were to grow outside your eye. I would like to say you can safely assume that won’t happen in the next couple of weeks, but my experience is - don’t assume anything! Ask your nurse or consultant the question - say you are concerned by the timeframe, ask if it will make a difference, and ask if there is any danger of it growing outside your eye. You could also investigate other places for your surgery - there are just four specialist centres in the UK - in London, Liverpool, Sheffield and Glasgow. If you live in England, you can ask for referral to any of the three English centres on the NHS. 

Unfortunately, the reason why time isn’t of the essence is that this cancer spreads through the body in the bloodstream, and for most of us, this will already have happened before diagnosis. I’m talking about cells, or micro-tumours (called micro metastases) these are far too tiny to be picked up on scans, but they are probably there already. So to answer your second question, yes it’s absolutely best practice to have an mri scan before surgery, but it’s very rare for any tumours to be picked up at this stage - they are detectable in only about 5% of patients at diagnosis. And even if they do pick up something, the eye surgery would probably still be the best way forward for you. So it’s best to have the scan, but my advice is not to worry unduly if it doesn’t happen. (Easier said than done, I know!). 

Anyway, if you’re having trouble sorting scans, just chase - politely but relentlessly. I had to set up my own MRI, and the follow up appt at Bart’s to get the results (which weren’t available when I went for the appt, so I had to chase again) and an appt at Moorfields before my surgery to review the scan results etc. No-one did this for me, even though the consultant had said this should all happen before surgery. It should all happen smoothly, but it doesn’t always.

Anyway, as others have said, just because the scan doesn’t pick up any cancer, it doesn’t mean it isn’t there.  But for many people, for at least half of people, those nasty cells will just die off, or fail to grow etc. Prognostic tests can tell you quite accurately how high your level of risk is, should you wish to know this.

I’m not aware of any adjuvant (preventative) trials for our cancer available in the UK currently.

I wish you all the very best for your surgery, and as has already been mentioned, the online group at Ocumel is very supportive xxx

Andalay
Posted by

Hi there - me again! I’ve just been taking a look at the link posted by GeezGeez. It’s one I’ve not seen before, and as GeezGeez says, it does have a lot of useful information, but just be aware that the actual test described is the one used in the US, it’s not routinely available in the UK. The one in the UK looks for the absence or presence of some specific genetic mutations, as well as cell characteristics, and is considered to be just as good as the US test at predicting metastasis. More info about the approach in the uk can be found at http://www.looc.uk.com/predicting-metastasis.html

Xxx

orlando man
Posted by

Hi Andalay,

Thanks for your messages. I have managed to get a PET scan tomorrow at UCLH - I organised this through my MS consultant. I also have my first appointment at Barts on 22 June.

I am interested in the fact you met with Moorfields before your surgery- was this helpful? I get the impression that they will only deal with the eye and nothing else.

I have had one meeting with them when they told me I had cancer and had to have my eye out. As you can imagine I wasn't really taking much in at that time. The doctors did not discuss any genetic testing - the first I heard about it was in the letter Moorfields sent my GP (copied to me).

I will have a look at the link you sent to try to find out more.

thanks

Andalay
Posted by

Hi again xx

Well done for getting the PET CT scan sorted. Even though you had to go ‘out of the loop’ to do this.

My experience was the same as yours. Moorfields will treat your eye, but don’t seem that interested in treating the disease. Although I hear others have had better experiences, so it might also depend on who you see.

With regard to the 2nd appt at Moorfields before surgery - I asked for that and got it. I had so many questions. As you rightly say, you just can’t take much in at the end of that awful day of diagnosis.

If I had this again though, knowing what I know now, I personally would have asked to be referred to Liverpool Ocular Oncolgy Centre instead of Moorfields. The outlook and philosophy there is different in that they do what they can to support through prognosis and beyond. They seem to me to have a more holistic approach, although ultimately they are still just an eye centre, and will only treat your eye, just as Moorfields will do.

You could take advantage of the next couple of weeks before surgery to either request a second appt at Moorfields and/or ask your GP for an urgent referral to another centre like Liverpool for a 2nd opinion.

Though the 2nd opinion route would add time and might delay your surgery. Any of the specialist centres can treat your eye perfectly well, Moorfields included, but as we all realise quite quickly, when you have eye cancer, the eye can be for some people the least of your worries.


Another option is to stay with Moorfields but ask them to send a sample of your tumour to Liverpool for prognostic testing. Liverpool does more in-depth tests (they test for more chromosomes and more parts of chromosomes than Moorfields does) and they provide a personalised written prognostic report, just for you. All I got from Moorfields was the doctor telling me verbally ‘You’re at high risk of developing metastatic disease, but don’t worry, it might never happen’.

Moorfields might resist a request for Liverpool to do your test, but Liverpool have offered to do this service for any referring centre (like Moorfields)  at no cost to the referring centre. Moorfields know this perfectly well.

Xxx