May 08, 2004 - 3:29 pm
I just want everyone to know how important it is to see a specialist.
There are only 6 in north america. Most likely your insurance will cover it and most of the specialists will consult with your oncologist.
PLEASE go check out the Carcinoid Foundation web site. It has a list of specialists, And tons of info for all of theese cancers listed above. Not just carcinoids.
The World experts are in Sweeden and see 35 neuroendrocine paitents a week and have 15 beds in their hospital dedicated to this.
I cant stress enough how important it is to see a specialist before recieving ANY TREATMENT. I cant tell you haw many paitents that I have met that have had Chemo or other treatments that are not effective in this very rare cancer. Unfortunatly, Most Oncologists have the best intentions but, just have very little knowledge.
You can talk to the carcinoid foundation about all of theese cancers and they are so nice and will give you tips on how to best handle your own case.
I know how desperate I have felt and I couldnt live with myself if i didnt share this info with you. You can also sighn up for the ACOR site and I introduced myself and I was shoked to meet many people with exactly the same cancer as me. You should register under the carcinoid page even if you dont have a carcinoid. this is where everyone with nero endrocine cancers seems to be. There is so much hope. There is alot of reasearch being done and many clinical trials as well. Its another wonderful recorce. I cant tell you how isolated I felt until i found theese sites.
Good luck with your journey. And please feel free to E-Mail me directly if you need any info. Also my page has links to theese sites.