Choroidal melanoma

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Hello there, well I've just come across this group having had a pretty eventful year so far. I was diagnosed with a choroidal melanoma in my right eye late in 2020 and underwent surgery at the amazing Liverpool hospital at the end of December. I received the plaque radiotherapy after removal of the tumour which stayed in place for a couple of days before the plaque was removed and the eye was filled with silicone oil to support the retina and help the operation site to heal.

I should mention that I have a very strong fear of having my eyes touched and so this diagnosis and the subsequent treatment has meant that I have been living my worst nightmare. I've had to dig very deep to get through this and couldn't have done it without my soul mate who I've been married to for over 40 years. However, the recovery went very smoothly and I adapted to the peculiar double vision which has now righted itself. The biopsy of the tumour wasn't good and revealed that it was an aggressive type of cancer and this has meant that I've been referred to an oncologist. Scans and tests have shown that there is no sign of cancer anywhere else in my body so far. 

The next procedure was at the beginning of May when I returned to Liverpool to have the oil removed and cataract surgery and again this has gone well. However, there was a blow I wasn't expecting when I returned for a check up last week and that is that there are some worrying pigments on the retina which could be another melanoma or some simple microphages which are of no danger. It's been suggested that they have another look in 3 months but my mind is now in turmoil. Because the tumour was on the limit of size to be operable, and the biopsy shows the tumour was aggressive I feel that the odds are stacked against me and I feel that the result is going to be inevitable and I will lose the eye. 

I'm not sure I have the strength to wait until September and feel that maybe I should go ahead without delay and request that I get it over with. I'm terrified at the prospect of losing my eye but there's a 50/50 chance that it could be OK. 

That's where I am at the moment, thanks for taking the time to read my story. 

  • Hi and a very warm welcome to the online community

    Thanks very much for taking the time to share your journey with choroidal melanoma with everyone in the group. I'm sure it'll be really useful to new people here who want to know what to expect.

    Although I haven't had the same type of cancer as you, mine was a skin melanoma, I do recognise all the uncertainty that comes with having a cancer diagnosis and how difficult making decisions can be. I wondered if you could perhaps talk through with your CNS whether to go ahead immediately with an enucleation to see what your consultant thinks?

    Do come back and let us know what you decide.

    x

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

  • So sorry to hear what you are going through and I truly hope things work out for you. I'm another "unlucky one"  that has just had this confirmed  last week at Moorfields at the age of 56.  My first question was "am I going to die".... as I sat in the chair at my local hospital on my own when this first blow was delivered.I don't really know why i asked this as it could have been an answer I didn't want, but fortunately I had had a quick no response. I'm currently trying to stop jumping ahead at the moment as every ache is making me overthink the worst and despite bellowing the merits of growth mindset and positivity for years I am finding it rather hard to say the least. I  have the choice of Proton beam & pips inserted or eye removal and have yet to decide. To say I'm bricking my decision either way  is an understatement and have to decide by the end of this week. My life has turned upside down overnight and still seems so surreal. I am not going to have a biopsy mind on  my eye as I  know  possibly knowing the worst will ruin my everyday life and I don't need anymore fear or google searching. Having a lifetime of liver scans is going to be more than I want to face as even with your eye removed it still doesn't end the worry. x

  • Gosh I'm so sorry, this is the news nobody ever wants to hear. You have a tough decision to make and whatever you decide will be the best for you. Rest assured that you will receive the best care and also there's plenty of support. If you are offered support from a health psychologist take it, I didn't think it was for me but just talking to somebody outside family and friends who knows what you're experiencing and those black thoughts you'll have is really worth doing.

    Look for other support forums as well as this one, I may not be allowed to name one specifically but they're out there and the folks on there are all on the same journey and can offer some really good advice.

    I'm doing well now, just 6 weeks post enucleation and looking forward to my first prosthesis appointment this week. Keeping positive and trying not to dwell on the bad stuff.

    Sending you lots of love and very best wishes. X 

  • Thank you so much for your lovely reply, I should have responded earlier but my head space wasn't quite there. I am so glad to hear things are going really well for you.

    I decided to go for the proton beam therapy at Clatterbridge in the end and I must admit the operation aftermath of the markers having been put in (Moorfields) has been uncomfortably painful, especially with the never ending headaches for many week and eye drops. At rimes I  must admit I have thought I should have just got rid of my eye and then technically the cancer would have gone. If all my family didn't think it was worth a shot first, then I probably would have and there logic was I wouldn't have been offered the treatment if there wasn't the possibility of a favourable outcome. Saying that, I  suspect it hasn't been a bed of roses after your op either and you are very brave! I guess tor me the healing process seems an eternal wait  with this route before the treatment can actually commence (Op 4th Sept, treatment 11th October). I guess every day is a step nearer and I'm counting down on the calendar.

    Take care x

  • You must be in the middle of your PBT by now - hope it is going well and you aren't drooling too much (they don't warn you about that) I realise now that it was actually  a very relaxing time  we were there during lockdown in February so it was get up in the morning go to Clatterbridge return  walk to Aldi to find something for lunch then lie on the bed for the rest of the day watching TV. (ordering a takeaway for tea)

    Your eyelid will probably scab over in a few weeks and become very itchy don't be tempted to pick at it.. I had the biopsy so was also bruised - when speaking to people i just blamed what ever family member  was with me for the wonderful black eye.

    being serious - take it easy over the next few weeks - update on how you have got on and keep your mask as a souvenir,  I couldn't due to luggage restraints and an  upcoming downsizing house move.

    AT my 6 month check up i was told that it  is shrinkin g so good news there

  • Hi

    Just tomorrow to do then the Clatterbridge treatment is finished. I have found it a breeze compared to the recovery and pain from the marker operation. I hope I don't get itchy skin and a scab as that will be unbearable not to touch! Saying that I didn't opt for  a biopsy as if it was not good news it would be more fearful.

    I can't wait to go home (to especially see the dogs ) as I miss their snuggles and the calm of  me stroking them. We have also had time for a bit of sight seeing in Liverpool between appointments but the take out food front is now wearing thin. 

    I'm  so happy that you have had good news about your treatment working.... I hope I'm lucky too and hopefully there will be some indication before 6 months as that is a heck of a wait. My biggest  anxiety is living with the ongoing  possibility of  this spreading. I now know myself better. (ha ha) .... I have no patience and I never realised how much I like to be in control! I guess I will have to learn to live differently somehow. 

  • Hello .I also had my right eye enucleation at RLUEH. I am now 5 yr post removal.

  • Thank you so much for sharing this. 

    It can't be easy and lots of decisions. 

    I too have always struggled with anything to do with my eyes!! So much so, that as a child I made the decision to not donate anything involving eyes when I became an organ donor. 

    For 12 years I have known about a very large choroidal nevus on my right eye, with the optical disk goes through. Check up every year and no change. Routine appointment early this year with opthalmologist and told it is growing. 

    I totally get the stress and need to research and thankfully found this group.  Now referred to Glasgow specialists with a wait and see diagnosis.  Regular routine monitoring appointments now. 

    Thinking of you and as with everyone here, always lots of support in this group. 

    HuggingHuggingHugging

  • Funnily enough I had that view about my eyes when doing my donor card!! They probably don't want me now anyway!

    I'm sure the recent news is a shocker and making a decision is so so hard. I struggled to make the call of either proton beam or eye out (choroidal melanoma) but was swayed by the fact that eye removal gives no guarantee of preventing the spread of  the cancer to my liver.  Also, the  time span involved with the treatment starting would put  me at no greater risk. Also, my family felt strongly I should  try option "A " first and then do "B" if all fails. I am now glad I had proton beam as I have pretty good vision (better than I expected for the size and location), even if blurry and some tear duct damage.

    The experts will not guide you other than giving you all the facts but I was told that they do not offer  options that are not viable and will give you a good chance of solving your issue. Unfortunately, it seems like everything is a wait and see with the eye I've now learnt . It took 6 months after my treatment for my first check up to find out whether my tumour had shrunk ( having gone from 5.5 mm to 1.4!) and now hoping I get some more good news next month and the fearful mri results next week!

    Fingers  and toes crossed for you xx

  • Hi, I also had a very aggressive cancer in my eye and during the operation to get clips in back of eye  to go to Liverpool, it was discovered the cancer had grown to the extent that they could not see the clips, as a result two weeks later the eye was removed. I had various trips back and forward to get the colour and fit right in the artificial eye, but 8 months on I forget that I don't have two working eyes. I found things like how long do I have to wait till I can drive again, it appears that this is 3 months after removal of eye, or longer if there is still a problem with judging distance. I informed DVLA after I was ready to drive again and did not have anything back from them, I phoned my car insurance and they said as long as I had a check up from optician and they said it was ok there wasn't a problem. These are the things that worried me and I couldn't get answers. I hope this helps someone.