What’s next: Seeking advice on how to navigate diagnosis appointments?

@colleenyoung any experiences you could share with my new questions? I don’t feel very brave today. My legs are so thin and it’s hard to walk. I’m trying to hold on until next Wednesday. With gratitude, Angela

Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of 381- I have insulin growth of 285. My creatine was also low. My chromin G was normal as was the 24 hour HPPA test. I’m still seeking a diagnosis. I have my follow up with my doctor from MD Anderson Monday via phone and I also was able to schedule a appointment with a carnoid specialist in Miami prior to Mayo. However I’m not sure what generally happens next. Do doctors typically order a Gallium 68 now? Biopsy? Should I push hard for a scan now? Would anyone provide Somatostatin at this point or address the glucose or creatine? Any shared experiences would be welcomed. I’m not looking for medical advice just an idea on having to navigate appoints and how quickly things may or may not move or questions to ask. Thank you!

I know I’m reaching but I’ve seen some articles that high serotonin has been linked to Chrons disease. Anyone ever have high serotonin (and not a carnoid tumor) but bowel disease? If so, how high was your serotonin? Thank you!

Same here! And it’s all in my head of course!

Thank you for sharing your story. It gives me hope. @astaingegerdm I’m trying hard to advocate, if I listened to my local doctors they would still be on the menopause track. Lol

@astaingegerdm
Thank you! I feel like a cry baby right now. Lol. Here I am, in Houston, alone doing a 24 hour urine and waiting to give blood tomorrow before flying home. Although I’m pretty chatty and friendly
Timeline:. Yeah, so back in August I started having two weeks of bad lower abdominal pain right above the groin. I’d lay down and then wake up in middle of night. It felt like a low burn across my pelvis and other times sharp like a appendix but on my left. PCP dr thought it was divercultis or appendix or ovary issue and ordered a CT that showed nothing so he said follow up with GI and GYN. GYN thought I might have enlarged ovary causing pain but then pain went away. Continued to experience nausea and such so I tried low dose BC while waiting for colonoscopy. Started feeling real bad in late Oct. Lost 8 pounds real quick. Couldn’t sleep. Hot flushes, thin skin, beginning of arthritis pain. Colonoscopy revealed nothing in late Nov. Went to oncologist and he ran first HPPA-5 showed slightly elevated levels but said not to worry until over 100 and not to come back unless I lose 20 pounds. Decided to run my own tests including cortisol with my symptoms. Showed blood level of 38. Then went down Cushing path. First urine over 150 then MRI should possible mircoandenoma with slight thickening. Reran labs. Normal. Cushing/tumor symptoms persisted and worsened. Went to Moffit and begged them to run serotonin test- which came back at 381. Went to local ER and showed thickening of small bowel. And here we are 🙂

Hi Phoebe! You have a couple of weeks until your appointment- it gives you time to learn more about NETs.
Can you please go over again your timeline when different symptoms appeared?
I was 48 when I was diagnosed with breast cancer- only one in my family with any cancer. I had 3 young children-11, 9 and 5.
My chemo months were a nightmare. My oldest understood that I would be better afterwards, the 9 year old thought I was dying and slept in my room the whole time. The 5 year old probably didn’t comprehend- we told him that Mom is going to be fine after the medicine and he continued living his regular life!
Write down all your questions- mark the ones you must have answers to before the appointment is over.
At Mayo they work very systematically, organized, to get to a diagnosis and ruling out other conditions.
Giving you a big hug for being brave!

Thank you so much! I’m so scared and I’ve been circling through local doctors that treated me like I was hysterical or menopausal since August. Then when symptoms didn’t ease up starting in November I became fearful. I have a beautiful 6 year old that needs me and I’ve always been the strong one, mentally and physically. I’m only 43 years old. Google is honestly how I started researching but the stats are scary- which is why I’m desperate for imaging. I know you can understand too and I’m not alone but being positive is hard when it feels like I woke up in a nightmare. How do we go from IBS to this in 6 months? Thank you for your support. Praying Mayo finds the answers. 🙂

@phoebeghostwriter You will need to register first (see the post above). Once you register, Michelle Walsh will email you the link to log on.

I'll copy the registration info here, but if you read the post above it will give you more info.

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

I totally agree with Teresa - take a step back, relax and allow the process to find a diagnosis develop systematically.
I fully understand your feeling of urgency to find an answer and to know what’s in your future.
You are going to the best possible medical center for evaluation and treatment.
I was there a few times for testing before a final diagnosis- not for NET- but there was always trying new approaches and always easy to communicate in between visits.
Hope you have a good visit!