Welcome to the NETs Group! Come say hi.

I have just been treating with sandostain shots once a month....the oncologist checks through mri to see how i am doing....i have had a reccomendation for University of Michigan. They say that there is a specialist there....if someone has their name i'd appreciate it

@lucci50 I see Dr. John Del Valle at University of Michigan. Dr. Del Valle does not do surgery, however, he is considered quite knowledgeable in the area of NETs. Here is the U of M website that introduces you to Dr. Del Valle http://www.uofmhealth.org/profile/137/john-del-valle-md. Best wishes! Teresa

I am having an emotional issue right now. We all know that from time to time our doctors will leave and we will get assigned a new doctor. That is has happened to me recently and I am very nervous about starting with a new doctor. I think the problem is each doctor has their own protocol on how they handle treatment and I am afraid that this new Doctor will change things. I won't know until May 15 and I am very stressed about it. There are no Net doctors in Las Vegas.

@joannem Thanks for checking in with us, Joanne. I understand the emotional component of having to change doctors. Tell us a little bit about the protocol you are currently following. Does this new doctor come by recommendation from your previous doctor? If there are changes he/she wants to make to your current treatment program please feel free to mention your concerns and get an explanation. If your current treatment has been working well for you, there might not be any changes so try to worry too much until you have an opportunity to meet this new doctor on May 15. Always remember, you can seek a second opinion if your concerns are not addressed.
Has anyone else had a problem with a change of doctors? Teresa

Does anyone have information on whether an MRI or CT scan is best when they are tracking your tumors?

@gaylejean That is a good question. I have always thought that the Octreoscan was the best way to track NETs, but I know that other scans have been used as well. Let's see what the other members of our community have to say about that.

@amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 Please share with us, what types of scans have been used in your situation to track tumors. Teresa

Hi everyone,
We recently launched a new feature on Connect called Member Spotlights (https://connect.mayoclinic.org/newsfeed-post/connect-member-spotlights-shining-a-light-on-community-members/).

I think the members of the NETs group will be particularly interested to read today's member spotlight about Teresa, someone each of you have CONNECTed with.

– Meet @hopeful33250: Striving so No One Feels Alone with Personal Health Challenges https://connect.mayoclinic.org/newsfeed-post/meet-hopeful33250-striving-so-no-one-ever-feels-alone-in-their-personal-health-challenges/

Hello All

I just wanted to be sure that everyone is aware of the 2018 National Neuroendocrine Cancer Patient Conference, September 27 - 29 in Las Vegas
For more information or to registery, here is the link, http://events.r20.constantcontact.com/register/event?oeidk=a07ef2ple0oe27a1aa0&llr=hbloa4dab

Teresa

Teresa... yes. I’ve been promoting it on our Wisconsin. NETs site.

Here is a Youtube video titled the ABCs of Neuroendocrine Tumors and Carcinoids.
https://www.youtube.com/user/CarcinoidNETs