Last one for the year: #pheochromocytoma The moment I was diagnosed with the recurrence, after the years of medical gaslighting, questioning my own reality; I couldn’t help but hear the things that had been said to me over and over. When I began writing my story, I was beginning to realize I’m not the only one We may be rare, but there are others out there struggling to find the same answers. This is what I mean when I say I never want someone to have to go through what I did. Cause here’s the thing, it’s happening all the time. These myths and outdated beliefs surrounding this disease are getting old and more dangerous as it evolves 1. If your labs are fine, you are fine. No elevated adrenaline hormones? Great, that concludes it 🤷‍♂️ - this isn’t always the case. It took 4 years for me to test with an elevated result. 4 YEARS! There’s a number of factors, lab error, tumor size, secretion, sometimes they are small and not secreting enough adrenaline to get a clear result. But just to stay the course. Please, keep pushing 2. Benign vs malignant. I don’t even need to go into this more. - It’s simple: NO MORE SAYING BENIGN. It’s not the way we describe pheos and paras anymore. They all have a high probability of recurrence and malignancy, which means they ALL require lifelong follow up. You may be wondering - what do I call it if not benign? either metastatic or non metastatic. 3. Tumours aren’t painful. Try telling this to my 10/10 flank and abdominal pain. - these tumors can and do absolutely cause all sorts of pain. There is different reasons for it, but just know it’s not in your head. It’s pretty excruciating but don’t forget - you can’t take opioids with this. It makes the hormone secretion worse and in turn worsens the pain! Talk to your doctor about safe meds that align with pheos 4. No need for surgery, this is just wrong wrong wrong so very wrong. RUN These tumours can’t stay in the body, let’s remove the risk of spread and sometimes misdiagnosis of it being a ‘nodule’. That does not exclude the fact that they are ACTIVELY SECRETING HORMONES What did we learn here tonight? 😉 reiterate in the comments or ask your Q’s!