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Ocular Melanoma


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5 replies to this topic

#1
Anthgarbutt7

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Hello,

 

Ive recently been diagnosed with a melanoma in my left eye. It seems from reading peoples posts that they have been given a lot more information than i have received.

Im not sure on sizes, dimensions, or even the official name.  I do know that my tumour is relatively thin so they are optimistic about risk of spread. It is next to the nerve at the back of the eye and they had a consultant meeting to decide on the course of treatment. They have ruled out laser and suggested SRS, which will happen at the end of this month (30th) in Sheffield under Prof Ian Rennie who I met at my last visit and was genuinely lovely.

 

Ive been warned that because of its close proximity to the nerve, I will likely lose my central vision in the eye but may keep some peripheral. I just was hoping for some advice on how the treatment may affect me. Particularly with the run up to Christmas and plans with the Children. Should I expect to be able to carry on as normal?/

 

Also, any advice on what questions I should be asking?  I feel like I get swept up in the system when I visit and I forget to take a second to think about things I should probably be asking.

 

I am at the Royal Hallamshire on the day before my treatment to have abdominal scans to check for liver spread I suppose. I do have a bit of a sinking feeling, I cant explain, particularly as they have said the risk of spread is low, but I have a loss of appetite and a really strange heavy feeling on my lungs. Certainly no jaundice or itchiness or severe weight loss, so hopefully just stress!?

 

Anyway, enough rambling. Any advice welcome!

 

Anthony



#2
raindrop

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Hi Anthony,

My husband was diagnosed with ocular melanoma in 2014, this was the first site I found about eye cancer. I then found OcumelUK , a great site with lots of information, very helpful and supportive, please do join they will be a great help to you.

Regards,

Jane



#3
Brendan

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Hi Anthony,

 

GET into the habit of asking for exact details. MAKE sure you can get copies of scans if you wish to transfer treatment center/hospital. You may need to get very affirmative /rude to move forward. Have you talked to Liverpool? Always good to get second opinions. Was proton beam discussed? (Thats up in Leeds).

 

Fingers crossed your clear and they get you early (50/50 odds). If unlucky head to Southampton. I think they are still the lead for OM in UK.

 

Bon chance.

 

Bren 



#4
Popeye44

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Hello Anthony - you're lucky to catch anybody visiting this forum website nowadays. It was of enormous benefit in it's time and still has a wealth of information available for newcomers to the potentially life changing game of ocular melanoma.

 

As suggested by Raindrop (Jane) earlier, www.ocumeluk.org is the primary source of information about our condition. The charity runs a Help Line too.  Several Facebook groups are administered by OcuMel UK. Just type Ocumel in the search box at the top in Facebook and it should come up with a list of pages & groups to join according to your specific needs. Membership of OcuMel UK is free and there's Membership form that you can complete on line ==>> https://ocumeluk.org...ecome-a-member/

 

Most of us know that the risk of spread is ever present and regular high resolution scans of the liver are essential for monitoring for early evidence of metastases. Sheffield tend to prefer using ultrasound for liver scanning. If they see anything suspicious, they will then propose an MRI. Ultrasound however, is not reproducible, is less sensitive, and, depending on your anatomy, it may not image all of the liver. Early detection of mets helps in the future management of the disease.

 

Biopsy of the melanoma is another area to consider. In the right hands, it should assist the diagnosis and support a prognosis. I'm not sure that Sheffield are fully in to biopsies.

 

It's important to distinguish between the treatment of the primary in the eye by an Ocular Oncologist and the treatment of or surveillance for mets. The Ocular Oncologist is not the person to manage body follow up.

 

For body follow up - Southampton (Prof Christian Ottensmeier - Oncologist) leads the best OM MDT (Multi-Disciplinary Team) in the UK. Southampton also has the skilled Interventional Radiologists and Liver surgeons.

 

Just to correct Bren above, when he said Leeds for Proton Beam, he probably meant Liverpool/Clatterbridge. The Proton Beam Therapy service is actually delivered at the Clatterbridge Oncology Centre on the Wirral but the Liverpool Ocular Oncology service under Prof. Heimann have a close relationship. Liverpool deliver some pretty amazing results with biopsies too and probably offer the widest range of OM treatment options.

 

I'm not sure I understand your comment about the melanoma being close to the optic nerve and that treatment could impact your central vision? The optic nerve is offset from the area of the retina that delivers your central vision (macula/fovea). If the tumour was over the optic nerve, its treatment would probably kill all vision. If the macula itself is impacted, perhaps your central vision is already under threat?

 

It's important to distinguish between the treatment of the primary in the eye by an Ocular Oncologist and the treatment of surveillance of elsewhere. The Ocular Oncologist is not the person to manage body follow up.


E&OE

All comments herein are purely personal views or opinions or expressions of personal experiences. Any actions you may take are of your own volition. No views expressed herein represent the views of or bear any relationship to official policy of any organisation.


#5
Popeye44

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Me again ... post was truncated ... being too verbose - again! I think I recall the tail of my post was ...

 

There are only three Ocular Oncology Centres in the UK. They are centrally funded so do not impact on your local trust funds.

Leaving Glasgow out, they are Liverpool, Sheffield and London. I believe that most of us in the OM community would place them in that order of preference too.

 

Good luck.

 

David


E&OE

All comments herein are purely personal views or opinions or expressions of personal experiences. Any actions you may take are of your own volition. No views expressed herein represent the views of or bear any relationship to official policy of any organisation.


#6
Brendan

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Hi David,

 

That's a much more superior contribution ;-) I must be getting old as I'm getting my beams mixed up. I was thinking of the GAMMA KNIFE up in Leeds (I think its cobalt radiation). 

Here is a link to some info re eye tumors - might be important due to tissue proximity issues.

 

http://www.healio.co...roidal-melanoma

 

FYI its good to keep an eye on this place you just never know who will pop by on their own journey seeking.  

 

Bren 






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