Hi Clarabee,

I'm sorry to hear about your diagnosis. I don't have any experience of this rare type of melanoma (mine is superficial spreading) but I do know there are several members on here who have posted in the past. Hopefully they will come along and share their experience but meanwhile I suggest you search either Uveal or Ocular Melanoma in the search engine (the spyglass) at the top of the page & you will see their posts. Also, can I suggest you take a look at this website which is great for information and they also have a support group you can join OcuMel UK - Supporting anyone affected by ocular melanoma

I will also send you a friend request in case you would like to chat & I can share general melanoma information with you by pm.

Good luck and I hope your treatment goes well,

Angie (Stage 3 melanoma patient since 2009)

Hi! I was diagnosed with uveal melanoma in Aug 2022 and had PBT in the November. Not sure whether you are having PBT or plaque treatment? Depends on size and location of tumour. The procedures you will have might seem scary at first, but the reality is that you will be well looked after and supported. I recommend that you search out OcuMel UK who offer advice and support for all ocular melanoma sufferers. They have a Facebook a group - OcuMel UK Patients Group - where you can ask questions and where there is a huge range of experience and advice. Hope all goes well!

Hi how are you?

Please share your experiences if that is OK. I too am facing the journey.

Thank you

Lisa

Hi Lisa,

Replies on here are a bit slow I find. I recommend you search out Ocular Melanoma UK. They are a charity dedicated to eye cancer and there is an active Facebook community with online meetings.

I am 2 years post-PBT now. The tumour has not grown at all, so that is the main thing. However, I continue to suffer problems with that eye - uveitis, high pressure and poor vision. Not sure it wouldn’t have been better to have had it removed in the light of what I know now, but it’s always an individual decision.

Hope you are getting through things.

Simon

Hi Simon 

Thank you for your reply.

Im Struggling I have joined that group.

I'm not sure if it's working for me, the comments although upbeat are also very scary.

It feels like a death sentence, not having more ways of dealing with it. 

Sorry to be so negative. 

Lisa

Sorry to hear that Lisa.

Whilst some people with our condition are having poor outcomes, I don’t think it’s inevitable. We all travel on our own individual paths. Early on, I found myself in a video call which included someone whose cancer was advanced and they were facing a very difficult time. It scared me and I haven’t been back to that group. It isn’t where I am and I hope I never will be. 

A lot of the time, I am able to just get on with my life but every now and again thoughts intrude about what might happen. I guess that effects is all differently depending on our circumstances, family situation, etc. As a sixty-something, I arguably have less to lose than a younger person might? I did speak to a counselor through Occumel around the time I had PBT. It was very helpful. I’m actually thinking about doing it again - a couple of things have recently knocked my equilibrium and it might help. Might that work for you? It can help to have someone outside who you can speak about all the dark fears to.

Simon

Hi Simon,

Thank you for sharing with me.

I have my cytology appointment at 9am tomorrow. Saturday at 9.30 I have a call with the counsellor. 

I'm 57 with a daughter of 25 and a son of 30.

Was looking forward to grandchildren and hoping this will all be possible.

I'm sorry to hear you maybe having a wobble

im expecting this will be the case with myself throughout my life. 

Thank you once again. 

Lisa

Hi Simon 

I'm have Plaque on the 5th.

I'm waiting for MRI and liver scans. Very worrying hoping its not spread.

Spoke with a Councillor this morning, it was helpful but only whilst I was in conversation.

I guess some progress has been made. 

Lisa

Hi Lisa,

Well, you are moving forward and getting treatment which is fantastic. The fact you are having plaque suggests the tumour is not a large one, so that’s good. The MRI should put your mind at rest and hopefully confirm it has not spread. I remember being SO anxious about that. They will probably suggest 6-monthly follow-up scans either with MRI or ultrasound.

Good that you have made contact with the counselor and that it was helpful at the time. I think I spoke with someone six times and you gradually build your resilience hopefully. We do often say it is a rollercoaster of emotions and it can be very scary at times. It’s a lot to get your head round, especially in the early days.

Take care and be kind to yourself!

Simon