Welcome to the NETs Group! Come say hi.

Hello All:

I think you might find this story of a NET patient (and this video) inspirational:

"I make different decisions now,” says Giovanna, 13 years after being diagnosed with neuroendocrine cancer. Her world crumbled after her diagnosis until she realized how she could use her music to heal -- both herself and others.

Today is rare disease day! Don't forget to visit NCANs website to watch videos of presentations from top specialist in the field of Neuroendocrine cancer!
#NCAN
#netcancerawareness
#showyourstripes
#carcinoidsyndrome
#carcinoidcancer
#originalzebras
#awareness
#endnetcancer
#bringinglighttonets
#neuroendocrinecancerawarenessnetwork
#awarenesssaveslives

Hello All:

Here is a video with Mayo Dr. Thor speaking about NETs.
https://mail.google.com/mail/u/0/

Very nice and thanks for all the mentor help!

Many of you have gotten to know @hopeful33250 in the discussions in the Neuroendocrine Tumor (NETs) group. Today @hopeful33250 is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post. The post includes video of @hopeful33250 talking about how she found Connect after her third neuroendocrine tumor diagnosis and experienced camaraderie there. She also shares how participating on Connect offered her a way to help other people through encouragement and pointing to resources. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

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

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

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

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/

@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