Just diagnosed

Hi I had ocular melanoma in my eye 7 years ago I have 6 monthly liver ultrasound scans and blood tests every 6 months after my op in Liverpool although lost partial sight in my operated eye I still here and live a full life don’t try to worry it’ll be fine 

regards Graham 

Hi don’t worry your in good safe hands I had that operation on my right eye Severn years ago bit uncomfortable to start with but you’ll get used to it my sight is not to good in my left eye now due to the operation but I’m nearly 65 now I still drive play golf and live life as near normal my next operation is a knee replacement but hey ho live life to the full x

regards Graham 

Dear Walking50, please dont worry to much.  That machine in Liverpool is amazing and WILL kill your tumour.  People come from around the world to get treatment from the proton beam machine.  i had my tumour when i was 52, like you, i was terrified and broke down to a counsellor a few days before i went to Liverpool.   3 years on and my life hasnt changed.  Sunlight makes my eyes a bit weird and so does strip lighting like in supermarkets but thats when you treat yourself to a decent nice pair of sunglasses.

Good luck,, we will all the thinking of you.

Hello

Try not to worry, the proton beam is an absolute  doddle, totally painless. The worst is having your eyelids taped out of the way with the micropore. You have already been through/going through the worst of it if you have had markers put in your eye. The people are really fabulous at Clatterbridge, very kind and will make you feel at ease and the hospital is very covid safe. I had proton beam in mid October and my first check up at Moorfields is March.... unfortunately it is a very long journey we are on! Wishing you the very best, take care and be kind to yourself.

I’m the same I had radiotherapy and get 6 months liver checks but never been ffor a full body scan

Apologies for causing any confusion, I just meant the initial MRI / CT scan that can be done on the abdominal area or other areas of the body to check for metastasis. I believe after that it's ultrasounds on the liver only. 

Oh I thought it was an mri /contrast on the liver every 6 months?  Might be me getting the wrong end of the stick... guess I will have to wait and see as I have only had my baseline mri and ct scan with contrast so far.

Hi, do you know roughly how long after your diagnosis you had your baseline MRI and CT scans done? 

I personally had an huge wait for the MRI/CT  baseline scans in my mind. I was referred promptly for them in August  to a hospital in London (from the London eye hospital), but then got referred on more locally (another 2 in the end  before it happened). I understood this was probably due to the backlog around hospitals. So basically I waited 4 months. However, this was not without a very stressful couple of days! My local hospital were not happy to do my MRI because they didn't have enough details on my NHS record about the markers. I was frantic  chasing this information for several days before my appointment and fortunately got a letter emailed across to me that they accepted from the cancer nurse  just in time ( literally 5 mins before my slot!). As we are quite rare, if being sent locally  for your MRI scan  and not linked to your eye hospital I would really check this out well before hand to avoid the red tape as I'm not sure local hospital usually deal with us.

I obviously don't know whether my wait was typical for this condition or a standard wait but all I can say is if there was massive concerns I think it  would happen more quickly and the odds seem to be more of  it not spreading than spreading from what I was told (liver specialist). Although not of course without risk factors. hence the lifetime scans. I was told my risk was 12-28% and I have a large  Choroidal melanoma.I think everyone is of course a different case.

I was diagnosed with the same in November, had the markers fitted in December (actually got out on Xmas Eve), and then had the PBT in February at Clatterbridge.

The staff are so supportive and at the end of the week let me take my phantom mask home with me. 

I've had my first post treatment video appointment with my consultant and have very little site in my eye now. I can see shadows and now monchrome, but like yourselvf I was terrified and still am.

Every pain in my eye or liver area makes me panic. I was fit and healthy prior to this and wish you all the best for your recovery