Ocular Melanoma support

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Hi!

Just wanted to introduce myself, it’s not actually me suffering from ocular melanoma, it’s my partner. I’m beyond devastated so I’m glad I found this place! Today has not been a good one. He’s recently had plaque therapy alongside the removal of the tumour, which I heard is really rare to have treatment like that? He was treated in Liverpool.

We’re both still so on edge, he was diagnosed less than 2 months ago yet it still feels so fresh. I am terrified (as is he). We’re both in our early 20s.. How do you guys cope? Disappointed

  • Hi  and a warm welcome to the online community

    It's natural that you'd be devastated on learning that your partner has ocular melanoma but you've come to the right place to ask questions and share experiences with others who have this type of cancer.

    My melanoma was the skin type so I don't know if having both plaque therapy and surgery to remove the tumour is normal or not and I wondered why you thought it was unusual? If you don't get any replies from others in this group who have had both treatments you could post in the ask a nurse section of the online community and one of the specialist nurses will respond within 3 working days. Clicking on the link I've created will take you straight there if this is something that you'd like to do.

    As for how people cope, I hope you don't mind me suggesting that you join the carers group which is a safe and supportive place to share your worries and emotions with other people who have a loved one living with cancer. If you'd like to do this clicking on the link will take you to the group where you can join and post in the same way as you did here.

    It would be great if you could pop something about your partner'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 '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

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

  • Hi, I had this treatment at the beginning of the year,also at Liverpool. The team there are amazing and your partner couldn't be in better hands. He's still early in his recovery and in time his eye will be opening and he will have some vision although not brilliant at this stage and he'll be looking through the silicone oil that they put in after the radioactive plaque was removed. He may also have double vision which should right itself in time. I hope his recovery goes well, it is a very scary time especially for the partner who has to watch their loved one. Stay strong and you'll both get through this 

  • Hi! Thank you so much for responding. Crazy to find another person who had this exact op as most people only have the plaque treatment! Explains why his vision is all weird still, how are you doing now? :) 

  • Hi there! Thank you for the response. Sorry to hear about your melanoma! It seems with the ocular type they either just remove your whole eye or shrink the tumour using radiation, I can't find much information on the removal of just the tumour and the plaque alongside. :) I'll look into the carers group, definitely don't mind! Thank you for your help.

  • Hi, yes I think we're in a special group to receive this treatment. I don't know the criteria as to which treatment is given to a patient. As your partner was treated at Liverpool he was privileged to have the world leading man who does this type of surgery in Prof Heimann.

    Over the coming weeks your partner will be able to use his eye a little more, the vision won't be perfect as he has the silicone oil in (correct me if I'm wrong, I think this is the normal progression of treatment). For me, it was quite a few weeks before I was able to read or watch TV, fortunately my husband has been an absolute rock and read to me in the evenings. I also listened to audio books. I invented my own therapy to help me use my eye as I had an aversion to light, wore sunglasses in the house lol. We have a large airing cupboard and I shut myself in there for a few minutes each day and looked at the light for the water heater! The dark was my friend. The double vision was very disorientating but gradually improved, he must be very careful coming downstairs. Take everything slowly, be kind to himself, rest when he feels like it or go for a walk. 

    By the end of the second month I was feeling much more confident, the double vision was almost gone and I even drove the car for short distances, then at the beginning of May I went back to Liverpool to have the oil removed and the cataract operation. The recovery was much quicker and I was back to normal quite soon, the vision is much improved although still not perfect.

    For me this is where things aren't so good. To rewind to the original diagnosis I was told the tumour was on the limit of size for the operation but I decided to go ahead with the hope of saving the eye. I also opted for the prognostic biopsy of the tumour which revealed that it was an aggressive type of cancer which puts me at high risk of it going to other parts of my body and I was referred to an oncologist. I've had scans and blood tests which thankfully are all clear.

    I returned to Liverpool last week for my post op check and although the eye is healing well there were signs that the melanoma could be returning. It was suggested that we give it 3 months and have another look to confirm this. I was really shocked at this news but having had time to digest and think about things I don't feel that I can wait until September with this hanging over me, that there are too many factors against me and have come to the decision to have the eye removed for the sake of my long term health. I'm in my 60s and otherwise in very good health and I want this to continue. I've done some reading up and found lots of positive stuff about living with one eye and although I'm scared I feel like I've made the right decision. 

    Please don't let this worry you, I was always made aware that this could be the outcome for me. I hope and pray that you will both get through this time and stay well and healthy.

    With my very best wishes to you both. 

  • Hi Piximarie,

    I hope you and your partner are doing well. There is an Ocumel support group on Facebook, it’s a great source of help & information. Jo Gumbs who founded the charity is lovely and so knowledge x