Will start by saying i am dyslexic and visual processing disorder which make me strugle with spelling and punctuation i will never be offended if you ask for clarification if something is hard to understand .
Hi my name is Lea I’m 30 years old, i have been diagnosed with stage 4 Neuroendocrine cancer ( and 2b Thymoma) . So a bit about me before getting to my diagnosis story , im happily married with two fur babies ( Chihuahuas) my hubby is a personal support worker , i used to work as an ECE at a daycare but have been unable to work for 4 years. I am a Christian who loves art , I enjoy volunteering with youth and children at church so now that you know a bit about me the details that bring me to this forum for the last four years I have had unexplained symptoms including heart palpitations , diarrhea body aches , muscle weakness, weight gain and flushing . I was worked up for autoimmune illness one doctor said i had antibody negative lupus but that did not fit right to me but I excepted it cause it was some sort of answer . But two year into that diagnosis i got worse my muscle weakness got to the point I could not physically hold my head up chewing food became hard. My husband was very concerned especially when my eye started to droop so i agreed to go to a walk in clinic as i had gone to er so many times in last 4years i was beginning to feel they thought it was anxiety . Well this decision probably saved my life Oct 2019 i walk into the office the doctor looked at me and said pretty sure you have myasthenia gravies lets send you to get some labs in meantime i wanna try something if you ok with that so he gave me a med called Mestinon and with in 45 minutes i could hold my head up and my eyes were open again. So i ended up getting a neurology consult and he sent me for a Ct scan i never expected they would find anything but they did a 12 cm mass on my thymus gland i went to a surgeon and he said sorry but he would not touch it it was wrapped around a main artery . But he reluctantly agreed to biopsy it came back Thymoma 2b, was put on Cisplatin chemo for 6 rounds but had to stop at 4 due to liver Toxicity. The plan was to rescan in a few months and give my body a break then try a combo of radiation and chemo , for timeline sake at about 6 months post Thymoma diagnosis I was continuing to have episode of flushing and diarrhea , heart palpitations and low-grade fevers i was sent to internal medicine cause no one could figure it out , that doctor decided to run a few blood test one was a Cga and a 24 hour urine test 5hiaa , they were both crazy high so i was sent for a Special scan called octritide scan. It showed i had multiple small tumours on my liver and in my stomach and small intestine. And my thymus really let up So i was sent to an oncologist that ran more test ( 3 biopsy liver, stomach and small intestine) all came back as Neuroendocrine tumour with highest grade being a grade2/3 ki67 of 19%( they noted it as atypical carcinoid ) So i am now about to start octritide injection next week and meeting with an oncologist who is familiar with nets on the 8th have only had a telephone appointment with him thus far but he seems great he diagnosed me with carcinoid syndrome and Cushing’s syndrome. Covid has slowed everything down i waited 3 months for endoscopy for stomach biopsy but thing are finally moving I finally have names forvwhat was wtong as scary as it its is its also very validating.. i could go on and give way more details but this post if already very long .. lol. thanks for listening I sometimes feel awkward talking to people in my life about my cancer cause it makes them uncomfortable .