Neuroendocrine tumor and carcinoid tumor

So sorry that you are going through this. Have you tried other hospital systems that could address this? You don't say where you live, but you might consider calling MD Anderson Cancer Center in Houston, TX. They have top doctors there & people come from all over the world to seek care from there. 1-844-541-3221 or you can request an appointment online. Best to you & I hope you get some answers sooner than later.

I just want to say a big “thank you” to everyone who has taken the time to read my somewhat “long winded” posts. I really appreciate the “hugs” and
“likes” as well. A little update after my lengthy post of yesterday; I heard from MSK, and based on my answers to questions they asked online, they say I should definitely do a 1 hour telehealth consult with a geneticist because my pheochromocytoma could be genetically linked. It is very important for me to know
if that is the case, because
I have 3 grown sons under
the age of 50, and I have 9 grandchildren under the age of 23. I wouldn’t want
any of them to go through
what I’ve gone through.
Before I ever took the postal letter carrier job, I
had been enrolled in college to work towards a
degree in medicine, and
because I was in a head-on collision, and suffered
a brain injury( not as bad as it sounds), a contusion of the left parietal lobe, which in layman’s terms is
a bruise, but it caused me to lose the use of my right
hand, and forced me to drop out of college, because I had no idea how
long this would last, and I’m not ambidextrous. I became so depressed over
this turn of events, because I love medicine so much, I felt I would have been able to help others acquire a good state of health, and I would have started in areas where people don’t
have access to the best medical care. I feel a healthy country is only as good as the health of the
people living in that country. We can do better, this is one of the wealthiest country’s on earth, but we have one of the worst maternal mortality rates, why is that? This is turning into a
book. Thank you for taking the time to read my posts. Guten abend!

Thank u so much for ur kind words. My insurance denied my NET Scan so I'm appealing that to get my scan done. I reside in Charlotte , NC. I had chasing wat was wrong with Me for over 10yrs and finally got the right Dr. to send me to a Gastroenterologist and this is where I'm at today. I've been educating myself on this rare form and that's why I came here. To search for answers, to be in support of and to see which direction to go with this. It's like I was just told this in March 3rd and have been trying to get a NET Scan since then??? I'm wondering if I should search for another Gastroenterologist or is this normal for wait time..??!

Hello @makebadaniels73,

It is difficult to say why there has been such a delay in having your scan approved by insurance. Have you asked your doctor's office about filing an appeal? Has your insurance company given you a reason to deny this scan?

Yes...it was denied due to the Gastroenterologist not sending my biopsy information that they requested. If this isn't handled by this week I believe I will be in search of another Gastroenterologist.

That is understandable. Do you have another gastroenterologist in mind at this time? Does your doctor's office give any reason for not providing this information to the insurance company?

Well as I questioned that as well and was told they provided the necessary information but was denied so one someone is not being honest. The insurance company did however send me the information of why it was denied via mail as well. I've had to get on them one time b4 for lack of communication . I believe it's her Staff and not her because as a Gastroenterologist, she is AWESOM, but at this point I feel as if more attention should be brought to the situation. I dnt have another in mind at the moment but I have been searching and reading reviews on the Drs. In the meantime I'm praying for a speedy response and strength for Us All!!

It is a bit of a drive but have you considered MUSC Charleston SC? They appear to have a NET Department. It may be worth the drive to get the answers and treatment that you seek.

Hello @scooby1 and welcome to the NETs support group on Mayo Connect. Have you been diagnosed with NETs? If so, would you please share (as you are comfortable doing so), a little about your NETs experience?

I will definitely look into it! I don't mind that drive when it comes to my health. Thank you for that information.