Where can I find a carcinoid syndrome specialist in Florida?!

@pmberman, I'm sorry to hear that Mayo Clinic in Jacksonville, Florida is out of network for you. Dr. Jason Starr and team are NETs specialists there.

You may find other Florida recommendations in these related discussions in the group:
- Anyone treated for NETs at Mayo Clinic in Jacksonville, FL https://connect.mayoclinic.org/discussion/patients/
- Anyone in the Orlando, Florida area? https://connect.mayoclinic.org/discussion/anyone-in-the-orlando-florida-area/

I am a patient of Dr Starr's at Mayo Clinic Jacksonville. My NETS were ileum primary with a large met in my liver. Last July I had a very successsful right hepatectomy to remove the liver tumor at Mayo Jax. Everyone involved in my care, including the facility itself, have been fantastic. I have been most impressed by the coordination of care between all of the dfferent specialties I have required. I understand they are out of network for you, but if you do happen to land there, you will be in great hands. I wish you the best of luck on your journey.

Thank you. I’ve heard good things about Dr. Starr. Is there a trick to getting in touch with him and his team? As a new patient it seems difficult to get through to them. They have a new patient appointment request form on their website but I haven’t received a call back after submitting the form. They are out of network, but I would just to pay a higher deductible in that case. If T hey have specialists, that’s the important part.

Thanks for the reply. I’ll see if I can connect with Dr. Starr. Let me know if you have a short cut. It’s been difficult getting through to them.

@pmberman, I suggest you call the appointment office and talk to a coordinator.
Jacksonville, Florida
Central Appointment Office
904-953-0853
8 a.m. to 5 p.m. Eastern time
Monday through Friday

The other option is to have your current doctor or oncologist submit a referral.

@pmberman, whether you are a Mayo Clinic patient or not, you are always welcome on this forum to share with others and to join the monthly Zoom support group hosted by a Mayo Clinic NETs social worker. See details here:
- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-2/

Ok thanks. I just called them and they said they need a biopsy because they are treatment only and don’t do screening. Who did your biopsy? Very frustrating because I’m concerned Clev Clin doesn’t not know how to identify the primary tumor in order to take a biopsy. I’m going back to Clev Clin this week to see what I can get done. There are areas that showed up on the PET so I’ll need them to biopsy those asap.

Are biopsies required to determine NETS?

It’s what I’ve been told my Mayo, MD Anderson, and Moffit. They won’t see me without biopsies even though I have a positive 5-HIAA urine test, a NET PET scan that shows “hot spots”, and text book carcinoid syndrome symptoms. Perhaps others have had a different experience. I did get an email from Dr. Jonathan Strosberg at Moffitt saying that he won’t see me without a biopsy, but he could arrange an appointment with Dr. Haider in Tampa who would review my results to date and further diagnose. I may go that route if I hit a dead end at Cleveland Clinic in Weston FL. I’ll keep you posted. This is a frustrating condition because most physicians have never seen or dealt with it so they brush it off as IBS, etc. which costs patients time, money and risks chances of metastases. I’m kind of in limbo at this point, but I know my body and symptoms. Combined with the urine and PET scan, it’s carcinoid syndrome, but I’m waiting for CC to identify the source and get the biopsy done asap so I can at least feel like I have some hope. All that said, I’m trying to stay positive for my family 🙂

I am new to this board-this is my first comment. Will be traveling to Mayo tomorrow for my two year post op PNET check. Mayo found my pancreatic tumor when it was very small plus found two brain aneurysms while looking for PNET in my pituitary, and have had aneurysm surgery on both at Mayo. I am commenting here because I have owned an insurance agency since 1975, and I believe you should challenge your policy to see Mayo 'out of network'. When you need specialized care and you have tried in the network and not been correctly diagnosed/treated promptly (and promptly is key with cancer), then you should file an appeal (done by letter). Based on your test scores, your carrier should allow out-of-network care. Don't know who your carrier is, but if you need help in writing an appeal letter, then I am happy to do so (no charge). Although I own an insurance agency I am a practicing attorney and retired judge, and have a real problem with insurance companies directing medical care because they are pursuing a cheaper route for the company vs. allowing the patient/insured the best care. Doctors should direct healthcare--not insurance companies.

I agree with you libby. People are dying while the insurance companies run their algorithms to limit their exposure to pay... it is so wrong on so many levels.