We are struggling to find an expert in neuroendocrine cancer and carcinoid syndrome.
My husband sees a surgeon in Vannes.
His gp has fobbed him off for a year! simply because he didnt recognise the symptoms he was showing as classic text book of this very rare condition.
France is in the process of establishing 5 centres of excellence for cancer treatment - one is at Lyon and I am trying to find the others as this may also help you.
we went to see the surgeon on monday in Vannes and have been told my husbands tumors are inoperable, due to number and in particular one which is near the biliary artery.
'luckily' my husbands skin condition, due to the secretions from the tumor had flared up so the surgeon saw it first hand and was really shocked, although to us it was really as bad as it can be.
He got on the phone straight away for advice, gave my husband an injection. I had downloaded masses of info from a good website and took it with me, he said that this cancer is very rare and he really appreciated my input
Monday night they had a case conference and he has been 'handed' over to a neuroendocrine expert in Rennes who we hope to see next week.
What a releif, its been a year of fighting our corner on this one
I am so glad that they are finally 'on the case'. Congratulations on your persistence and research! One of the great cultural differences for us to come to terms with is that although the information does exist - in normal situations, it has to be asked for directly rather than simply being told as a matter of course. How much more complex in a situation like yours. I do hope all goes well, and look forward to any up-dates you have time to post.
It's bad enough having a "normal" cancer with all the stresses and strains but to contract one which is very rare must be dreadful.
Having said that, our experience is that when the hospitals/doctors/clinics finally get going, then everything happens quickly. Good luck! Thinking of you.