Welcome to the forum Stuart.

I'm glad to hear you're being monitored every 3 months since the melanoma was found and that it hasn't grown in size. I've had a look around the forum and found two members - [@J3nni]‍ and [@mm71]‍ - that have the same diagnosis as yourself and now that I've tagged them in this post I'm sure they will pop by and say hello. They have both had the plaque treatment so won't be able to tell you about PBT but it's always nice to be able to talk to others who know what you are going through.

If you would like to someone about PBT our cancer nurses are just a phone call away. Their freephone number is 0808 800 4040 and are available Monday - Friday between 9a.m - 5p.m.

Kind regards, 

Steph, Cancer Chat Moderator

Thanks Steph, hopefully I will hear back from them soon.

KInd regards

Stuart

Hi Stuart

my name is Joyce, 5 weeks ago I was told I had a malignant melanoma of my eye found by having a normal annual eye test.

Due to the tumour size I was advised that I would need to have Proton Beam treatment as the tumour was medium to large size the radioactive plaque would not be suitable. I have been warned that as the tumour is very close to my optical nerve the treatment I have would destroy some or all of my vision in that eye, a small price to pay.

 Just one week ago I had the tantalum markers inserted under general anaesthetic as a day patient, carried out in London. Today ( 8 days post op) my eye is all but healed, still a little bloodshot but quite comfortable , at the moment I can not feel the markers and hope that will always be the case. My vision in the affected eye is fuzzy at the moment ( before op I had perfect eyesight in both eyes) but I am still using eye drops 4 times daily for another week and the side effects of this is that vision can be disturbed so I'm hopefully that once I've stopped the drops my sight will be back to before that is until I receive the PBT as of course I have been warned that my sight will permanently be affected.

I am having my PBT w/c 22 October.

I hope this has helped with your decision

Regards

Joyce

Hi Joyce

Thank you so much for getting back to me. I am so sorry to hear about your melanoma. Like you, mine is close to the optic nerve but fortunately not very big at the moment. I am just sitting and waiting, and going back every 3 months to see if it has become any larger. If it does get any bigger then I have the difficult decision of plaque v proton. It still feels unreal to me at the moment, like it is happening to someone else.

Thank you also for telling me about your experience with the tantalum markers. It is very difficult to get customer feedback from hospitals due to confidentiality. I have done a lot of research and work on our markers, they are very small, 2mm in diameter and made or pure tantalum which is very biocompatible so you should have no trouble at all with them in-situ. I always wonderd if you could feel them.

If you do get the chance I would be very interested to hear about your experience with the PBT, have you managed to talk to anyone else who has had treatment?

I hope your vision is better after the drops, and that everything goes well on the 22nd. I really am grateful that you have taken the time to write and tell me about your experience.

Thank you so much,

Stuart

Hi Stuart

I hope you are well. I had hoped to have replied much sooner but the cancer chat site was experiencing problems with Hotmail.

I have now finished my Proton Beam therapy (PBT)and very pleased to report that other than my vision I have experienced very few side affects, the actual treatment was totally painfree. The treated area suffered blistering and scabbing but that's all cleared  and I have not yet ( fingers crossed I don't) suffered any nausea or fatique and  believe I won't do now as I'm in my 7th week after treatment finished. The PB was carried out at Clatterbridge Liverpool where the staff were beyond fantastic. They arranged everything from hotel accomodation, taxi to/from the hospital each day, nothing was too much for them. Julie the PBT co-ordinator was absolutely wonderful as were her colleagues. I was informed that 2 or 3 people are recalled during the initial year for a tweak of PBT,  if I am one I hope not be worried as of course I have experience now. I remain well and can not feel the markers. My vision is getting more blurred now but hopeful that giving time my other eye and brain will compensate, I am able to work with ease but drivng at night or in poor light is difficult however during the day no problems.My eye suffers from dryness now but using drops during day and ointment at night it feels more comfortable.

I feel a little bit of a fraud as, to the outside world I look my normal self, please don't get me wrong I do not wish to suffer further, but having this "blight"  has completely ruled my life  also of course my nearest and dearest and that hurts, I feel as if I've let them down, given them worries and concerns. Like you I feel as if it is happening to someone else, not me! Me with cancer, can't be! I will have 6 monthly liver scans for life now in case of secondary cancer.

I have had my follow up at Moorfields, last week, and they report all looks good although the full extent of the affects of treatment will not be known for 12/24 months. My next appointment is April 2018.

I really wish you well and hope you are coping with your journey and wish well in the future and please do keep me posted on your developments

regards

Joyce

Hi Joyce

Thank you for your message. That is great news about the PBT treatment being over and hopefully the worst of the side effects are over now too. Please let me know how the follow up goes, hopefully you won't need any further treatment. I was warned about the problems with my vision which is one of the reasons I haven't just gone ahead with the treatment, I am still waiting to see how things go.

I am glad the hospital looked after you so well, it is reassuring to know that they are good that way.

But you certainly can't blame yourself for this, and I am sure your loved ones do not think you have let them down at all. You can't think like that. It's a bad road to start down. The good thing is though, they caught it in time to treat and hopefully the worst is behind you. I hope so.

I don't know if i told you but I also have a small tumour in my spine, right inside the nerves so they couldn't get in and look at it or take a biposty. That was my first experience of a real scare. I had to go back for a second scan 6 months later and I didn't tell anyone, my wife or daughter. When the follow up scan was performed and the tumour hadn't changed I felt a bit happier and decdied ot tell my wife. She was very strong and supportive and I know she was more upset that I had kept it from her for 6 months and had gone through that time "alone."

My next eye test is in February and I am already getting anxious hoping that nothing has changed. I also have another follow up scan on my spine in January so fingers crossed on that too.

Thank you again for your honesty and for sharing your experiences with me, it is really a big help for me.

Take care, and I hope you and your family have a wonderful Christmas and New Year!

Stuart

Hi, like you I had a freckle in my eye which turned malignant earlier this year. I have just had tantalum markers inserted in preparation for Proton Beam therapy treatment in December. I am also feeling very vulnerable and anxious as to what might happen next, ie; vision loss and other associated cancers.

I am 5 days post op now and eye still very sore and with blurred double vision. Am very worried about losing sight etc as was very fit and active prior to this real body blow !

How Are you coping and how has it affected your sight please. I have just joined this site and any support would be helpful.

Thanks

Bob

Hi Bob

to be honest , I’m fine but wasn’t prepared for the amount of sight damage from radiation. At first it was ok , just sore for a few weeks of treating it with drops and cream but then the vision became a problem and I rang up my named nurse who got me an appt with my surgeon.  I’m not sure if I didn’t fully take it in about sight damage but what sight I have is hardly any use. It’s permanent also . All kinds of thoughts go through your head , I think I’m at a low point after dealing with it remarkable calmness, I worry about the abdo checks I have every six months also  

Hi Dotspot and Bob66,

I'm a cutaneous melanoma patient, not ocular, but I have several friends with ocular melanoma & they recommend the following website Melanoma Patient Network Europe which has a lot of information regarding ocular melanoma www.melanomapatientnetworkeu.org/ocular-melanoma.html

Angie (Stage 3)