Should I see a NET specialist?

@gram26

Hello Jane and welcome to the NETs support group on Mayo Connect. I so appreciated you saying, "...I want to stay on top of this tiger!" That is something all of us would like to do! You are wise to want a good follow up plan that will keep you as healthy as possible with DIPNECH.

We have several members on Connect who also have DIPNECH and I would like to invite them to post about their experiences for follow up with you. Perhaps @californiazebra will share her experiences with you. I would also encourage you to look at a discussion group that deals specifically with DIPNECH. Please read the posts, I think you will learn a lot from others, and you can begin posting your questions in that group. Here is the link.
https://connect.mayoclinic.org/discussion/new-dipnech-diagnosis-need-advice-on-doctors/

Getting another opinion, especially about the shortness of breath is probably a good idea. If you would like a consultation with Mayo Clinic here is a link that will take you to the appointment website, http://mayocl.in/1mtmR63. You can seek an appointment using this website at any of the three Mayo Clinic campuses (Minnesota, Florida or Arizona).

I look forward to hearing from you again. Has the shortness of breath become more of a problem recently, or has it remained the same since your diagnosis ten years ago?

It has probably been close to 10 years since DIPNECH was suspected in me. In the following years, I have been to Denver to Jewish Hospital for a week, they confirmed the diagnosis, and since have been followed here in Atlanta. No doc has ever mentioned anything more than a twice yearly CT scan, which has now changed to once yearly as there has been little change. Do I need to go further? The one thing that I do know is that I become very short of breath easily, am on oxygen at night only or when I fly, or if I go into the mountains. Just wondering what Mayo would advise as I want to stay on top of this tiger! Jane Weaver

Hi @lizzyeastwood,

I noticed in a previous post that you are being seen at Mayo in Rochester. Is that correct? If so, you are probably seeing a NET specialist. You can certainly verify that, though with your medical team.

I think that is your call. However, I would see a NET specialist just to be cautious.

Hello

I'm on a watch and observe plan. I will have my next scans in six months or approximately in October or November.

Hi. I guess my original post was confusing. I had a PNet resected and now I am on six months scans and blood work. Because it was resected I didn’t know if I should be seeing a Net specialist, or have a Net specialist on my team. Thanks

Dr. Sonbol is my doctor as well.

Hello @fabiant,

I am glad to hear that you are being seen by NET specialists at Mayo. What is the current plan of treatment for your PNET?

I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They have a very good NET program. Dr Sonbol is my doctor and my surgeon is Dr. Stucky who specializes in PNETs also. They are part of a multi-disciplanary team to diagnoses and treats PNETs. Good luck.

I go to Mayo Phoenix/Scottsdale. They have been a lifesaver for me too.