Eye cancer

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

I have just been diagnosed with eye cancer.

Rhinestone Cats eye

Hi,

I have just been diagnosed with OM Thursday. I have so many questions!

It was confirmed through ultra sound- is this conclusive. Or would they need more tests to confirm?

Iv had the letter where the eye doctor has referred me to oncology.

Is it normal that they have detected internal blood flow in lesion? 


Iv just started experiencing pain, I think Iv had pain for a while, and it’s not registered. I have nursed my son through leukaemia he rang the bell Friday after 3 Years treatment 


Iam so worried Iv just turned 36 I have a young family, I have all the symptoms and I just did not notice them, looking after everyone.


I’m the strong one in our family and I’m trying to be strong now but I have no idea of what my plan is going to be, the doctor gave me no details. Iv found what I have through decoding her letter of referral.


Is this normal that they don’t give you much information?


Can I take painkillers, will they help with head and eye pain?


I’m a fighter, I did it for my baby, my mum and I’m gonna do it for me but I need to know what I’m up against xxx

src60
Posted by

Hi and welcome to the community, though sorry to hear about everything you have been going through. I have no experience in the eye cancer department and only picked up the message in looking at the unanswered posts, sorry this forum is less active that others.

From what you say it would seem someone thought you might have cancer and referred you for an ultrasound in an attempt to rule that out. The ultrasound could not do that and so you have been referred to an oncologist with suspected cancer - certainly a ultrasound is not diagnostic for cancer.

It might help you to look at our pages on ocular melanoma including all the tests you might have to get a diagnosis and then treatments that might be available.

<<hugs>>

Steve

Andalay
Posted by

Hi there

Sorry to hear your news.

Yes, OM can be confirmed without biopsy, it’s one of the only cancers that can be.

Where did you get your diagnosis? There are only four centres in the U.K., and some are better than others.

Yes, blood flow to the tumour is one of the diagnostic features of OM.

Treatment of the tumour will most likely help the pain.

There are things you should know before going ahead with treatment. Yes, it’s a shame, my experience is the same, that the doctors don’t give you much information.

All cancer is nasty, this one is no exception. I think it’s why some doctors don’t tell you everything upfront.

My suggestion is to make sure you ask about prognostic tests before treatment, if you don’t want this, it’s fine. But if you do want it, if you wait til after treatment, it might be too late.

Message me if you’d like more information.

Xxx


Rhinestone Cats eye

Hi 

Thankyou for answering me, I got diagnosed and I am under moorfields city road London 

What is prognostic tests?


Andalay
Posted by

Hi again

I was diagnosed at Moorfields in December, and had my eye removed in January.

What treatment is being suggested for you?

Generally I believe that most treatments are very successful at treating the cancer in the eye. Depending on the size and location of the tumour, your doctor will also try to save your eye and your vision, in that order. First, treat the cancer (to help save your life), then save the eye if possible, then save the vision, if possible. Almost all treatment is likely have some impact on your vision, I think. It’s useful to ask and understand what the likelihood is for you of saving your eye and your vision.

Unfortunately, even once the tumour is treated successfully, the cancer can still spread to other parts of the body. It does this via your blood, which is once of the important aspects about the tumour having developed its own blood supply. Cancer cells might already be circulating in your blood, and sometimes (not always) they start growing somewhere else. With eye cancer, the most usual site is the liver. This is called secondary eye cancer, or metastatic eye cancer, and there is not really any effective treatment for this.

There is, however, a very reliable prognostic test that can be done to tell you if you are at high or low risk of this happening. Now, not everyone would want to know this, given that there is no treatment. But many people do want to know, and in fact there s a good chance that your prognosis will be good. Even if it’s not, some people still like to know so that they can make plans. This is especially important if you have dependent children, like you do. ( I do, too).  

For the test to happen, you need a sample of the tumour from your eye. If like me, you have your whole eye removed, it’s easy, because the tumour is in the eye. If you opt for a radiation therapy, your tumour will be treated in your eye, and in order to have a prognostic test, you’d need to have a small amount of tumour removed (a biopsy). This has to happen before, or very shortly after treatment, because once the tumour is dead, I don’t think the test will work.

Here we have the problem. Moorfields don’t offer biopsies.... but Liverpool Ocukar Oncology Centre does, and have been doing so for about 20 years. There are some risks associated with a biopsy, which at Liverpool, they can advise you, so you can make the decision that’s right for you. To my knowledge, Moorfields don’t offer this.

I found it quite a struggle to get my prognosis from Moorfields. The attitude there seems to be ‘you don’t need to know, and if the results are bad, you’ll just get upset and worried’.

The other potentially important role of prognostication is that it identifies the genetic type of your tumour. There are several different types of uveal melanoma, and there is a lot of promising research happening, but increasingly this is likely to be targeted at particular tumour types. There is nothing out there yet to my knowledge, but if something does come up in the future, you might need to know the genetic make-up of your tumour in order to access medical trials or treatment.

If you feel you want prognostic tests, and if Moorfields can’t or won’t offer this, you can ask for a referral to Liverpool Ocukar Onvology Centre instead, on the NHS.

More 8nfornatio is at the U.K. Support group Ocumeml .https://www.ocumeluk.org/ and the Liverpool website http://www.looc.uk.com/predicting-metastasis.html.

Also a great YouTube video about biopsies and prognosis in eye cancer https://m.youtube.com/watch?feature=youtu.be&v=hxjuRccTi4k

Sorry to bombard you with information, but when it comes to cancer, ignorance is NOT bliss! To be fair, you can also understand why doctors at a Moorfields prefer just to treat your eye, and let someone else deal with what might happen next. This is such a lot of information to process, all at once. 

Good luck and please keep me posted

Lesley xxx

 

keitht
Posted by

Hi Andalay

Are you aware of OcuMelUK, the only eye cancer related charity in the UK?

The members are all eye cancer patients, there are also Groups for family members.

You will find plenty of guidance, links and support.

Entry is free, you can find us on facebook. 

Keith 

Rhinestone Cats eye

Hi

 I saw my consultant yesterday, and I’m going to have proton beam therapy, I’m having the clips done Saturday, I still need to have my other scans done, but for the moment I’m happy they are treating me so quickly.

I got offered that test, and genetic testing because of my family history, I’m going to do both.

Thanks for your help and support

Janna

Andalay
Posted by

Good luck Janna. I’m so pleased it’s moving quickly for you. Well done.i hope it goes well. Proton is done in Liverpool, so I guess you’ll have the clips at a Moorfields, And the treatment in Liverpool. You’ll be in good hands. Xxx

I’m glad you’re getting the genetic testing too. Eye cancer isn’t often hereditary,, but I believe it can be occasionally, or the mutation can be one that can lead to several rare cancers in family members at a young age, and i think you’ve had more than your fair share of cancer in your family. Big hug. XX

i just got my temporary glass eye this week. I know I should be all positive and strong, but I really hate It. I’m just going to keep it covered up. I don’t want to have to look at it every day and be reminded of cancer. I know that sounds pathetic, but it’s how I feel.

Keith, thank you, I will try ocumel. I think they don’t have much resource though. I tried the helpline repeatedly in the immediate personal crisis after my diagnosis, and there was no one there. I emailed them and I finally got  a reply but two weeks later, far too late to be of any help.. Personally, I don’t like Facebook anyway, and especially now I’ve only one eye I really prefer not to show my face to the wider world, so I think it’s a bit hassley and even ironic that the support group for ocumel can only be accessed on Facebook. I finally gave in and reactivated my old Facebook account just to try to join the ocumel group, but nearly a week later, my request to join is still pending. I don’t think anyone actually works there. Though their website has some good information.

xxx

keitht
Posted by

I am sorry you have had a problem. The staff are part time but please call this number 07775 414615 and explain the problem. xx