Posted on 10/9/20 6:37 AM
@Itsgracie I totally get it - if you don't have a "common" cancer or normal cancer journey people question your anxiety about it. I have this rare genetic cancer syndrome - Lynch Syndrome and we keep cutting out body parts to prevent cancer. I am a previvor of endometrial cancer and soon to be previvor or survivor of ovarian cancer - ovaries come out and we biopsy next friday. Ironically colon cancer is top of the list but I only got surgery there because of grade 3 and one grade 4 Hemorrhoids but no colon cancer yet. On top of that last year I couldn't get out of bed for two months and everyone was like you are lazy - no I was fighting EIN which is premalignant endometrial cancer - if we hadn't taken out my uterus I would not be here typing now. Everyone wants to dismiss it in my family - they are like well you didn't have cancer so I get it. Plus a chance I have Addison's on top of all this which has to do with adrenal glands - it is a lot. Not sure if this helps but at least reach out here - https://moffitt.org/cancers/neuroendocrine-tumor/your-neuroendocrine-tumor-specialists/ and see if they can't help you with the paperwork your insurance might need to justify a specialist. Might just be you need a certain test to validate. I have had similar hoops to jump through. Don't give up - cancer sucks for sure and I get it.