Orbital exenteration plus radiotherapy

Hi Tony1115

I don't have the experience you're looking for but noticed that your post hadn't had any replies yet. 

I typed 'exenteration and radiotherapy' into the group search bar and found these previous posts which mention it. You could have a read through them and respond to any of the more recent posters if you think they can help you further.

You say that you've not had any support at your hospital. You should have been assigned a CNS (cancer nurse specialist), sometimes called a key-worker, who would be your point of contact if you have any queries. If this hasn't happened you could speak to your consultant's secretary and ask for this person's details.

x

Hi 

Thanks for your advice. Previous posts not really helpful so I have been trying to get support from the hospital. The Macmillan volunteer at hospital gave me lots of useful numbers and I rang around. However it seems I dont have a key worker, perhaps due to covid restrictions or me being dealt with by opthalmology dept . In fact I was passed from  number to number for various different areas (head and neck, skin,etc ) with a couple of promises to ring me back after they'd had a look at notes and checked with their depts . A weeks gone by and no responses.

Surely someone with my level of disfigurement and uncertainty should get some support, Im thinking of attending my next clinic without a patch, that might get some attention.

 Sorry to go on .

Tony

Hi Tony,  just wanted to check in with you. I was diagnosed with conjuntival melanoma back in 2015. I nearly had to have a exenteration. Lucky for me my surgery was less evasive. I found back then it was difficult to get a straight answer from anyone, or the same answer, as this of cancer, came under two different specialties . And so rare, that there is no set after care.

There was a difference of opinion as to whether follow up with MRI scans , as eye cancer can spread to to liver, or CT scan as melanoma can spread any where. Not all members of either team fully up to speed, on which course of action to take.

You should still however have an assigned specialist nurse. Not that they are readily available .  I agree you will need to contact your consultants secretary, who may be able to liaise between the different specialties.  

I hope all goes well for you.

Hi 

Thanks for you message.All is as well with me as it can be ,skin graft coped well with radiotherapy and prosthetics are making my new eye. As my problem was BCC theres not much chance of spread but weve no way of knowing if radio got all of the cancer (scanning is useless due to the nature of the surgery).

No psychiatric help  but NHS here in northants is on its arse so I doubt it would be adequate anyway. In fact I think managing on my own (with a very supportive partner) has been a positive, making me think of my future. Too busy to worry , with it being the shooting season and holiday planning to do!

Dont take them too seriously - works for me!

Tony