Learn About NETs and monthly meetings

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 15, 2021

There are many opportunities to learn more about this very elusive and hard-to-diagnose disorder called Neuroendocrine Tumors (NETs)/Carcinoids. When a new learning opportunity becomes available it will be posted here.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Hello All,

The Neuroendocrine Cancer Zebras meet monthly, via Zoom. Our next meeting will be Thursday, March 7, from 5:30 to 7:00 p.m. Eastern time (find your time zone). You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker as well as a sharing time with each other. Topics include symptom and disease management as well as the emotional, physical, and financial impact of disease. This is a great way to ask questions of the guest speaker and to virtually meet and talk with other NET patients and share your experiences.

You must register in advance in order to obtain the Zoom link. Please click the link below to register:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf

After registering, you will receive a confirmation email containing information about joining the meeting.

Location: Zoom online meeting
Contact: Loriell Grossling, LCSW
grossling.loriell@mayo.edu

This is an especially good way for our newer NET members to become acquainted with other patients.

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I recently learned of a podcast on the topic of, "Bone & Brain Metastases in Neuroendocrine Cancer. The speaker is, Dr. Robert Ramirez of the Vanderbilt University Medical Center in Nashville, TN. Here is the link to the podcast:

https://www.lacnets.org/podcast/30?blm_aid=182396978
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@vidavitality1

Hello,
Is this being monthly, and if so, when will the next meeting be held online?

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Hi @vidavitality1,
The NETs monthly meeting is on the first Thursday of every month. The next meeting is March 7. You can see full details about when and how to join on Zoom here:
https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-10/

See all Events https://connect.mayoclinic.org/events/

Naturally, you can connect with other NETs members any day and time in the NETs online forum:
- Neuroendocrine Tumors (NETs) Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

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Hello,
Is this being monthly, and if so, when will the next meeting be held online?

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The Neuroendocrine Cancer Zebras meets monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time (find your time zone). Our next meeting will be on Thursday, February 1. This month's speaker will be Dr. Moain Abu Dabrh, Integrative Medicine, at Mayo Clinic. You can join the meeting virtually using Zoom. Please note that in order to obtain the Zoom link, you must register in advance.

Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf

After registering, you will receive a confirmation email containing information about joining the meeting.

Location: Zoom online meeting
Contact: Loriell Grossling, LCSW
grossling.loriell@mayo.edu

All are welcome. You do not need to be a Mayo patient in order to attend the NETs support group.

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The Neuroendocrine Cancer Zebras meets monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time (find your time zone). Our next meeting will be on Thursday, January 4. This month's speaker will be Dr. Richard Taylor, Oncologist and Palliative Care, Cancer-Related Pain. You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker. Please note that in order to obtain the Zoom link, you must register in advance.

Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf

After registering, you will receive a confirmation email containing information about joining the meeting.

Location: Zoom online meeting
Contact: Loriell Grossling, LCSW
grossling.loriell@mayo.edu

All are welcome. You do not need to be a Mayo patient in order to attend the NETs support group. I would especially like to invite some of the newer NET members on Connect such as: @penlandtr1 @djchambers @maymaria @rs12122 @lindabees @emilyfaith @mcjelly @ocean3131.

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@jenniferrasigade

I didn't know that they weren't curable. I had Dr. Anthony, a neuroendocrine cancer specialist tell me that if I have a distal pancreatectomy, that it is curative. I know that I would have to have scans to see if the disease reappears, but I thought that it would only be for a few years and then , I would be considered cancer free. This a blow to me.

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My surgeon told me the same thing. My surgery was successful...distal pancreatectomy, spleenectomy, and cholecystectomy. Tissue came back clear. A year later it had metastasized to my liver. I'm not saying this to scare you. I'm saying it to remind you to not miss any follow up scans. I got busy and missed a couple when my husband had heart surgery. When I got the scan done, it was a big surprise. I'm getting great treatment and I'm doing well. Just be vigilant. There are so many treatments and new ones coming! Best wishes for you! Linda

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@jenniferrasigade

I didn't know that they weren't curable. I had Dr. Anthony, a neuroendocrine cancer specialist tell me that if I have a distal pancreatectomy, that it is curative. I know that I would have to have scans to see if the disease reappears, but I thought that it would only be for a few years and then , I would be considered cancer free. This a blow to me.

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Please take heart! NETs are still a relatively new and rare cancer diagnosis. Each person is unique. Also, depending on where your NETs have invaded your body depends on your possible curable solutions. Your doctors are your best source for options. I wish you the best possible outcome!

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@mfgw

NETs are not curable, just just have to stay on top of any old and new growths.

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I didn't know that they weren't curable. I had Dr. Anthony, a neuroendocrine cancer specialist tell me that if I have a distal pancreatectomy, that it is curative. I know that I would have to have scans to see if the disease reappears, but I thought that it would only be for a few years and then , I would be considered cancer free. This a blow to me.

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I would like to extend an invitation to all members of the NET support group on Mayo Connect to a virtual meeting hosted by Mayo Clinic, Jacksonville, Florida. Here is the information for the meeting on Thursday, December 7, 2023, from 5:30 to 7:00 p.m. Eastern time. This month will be a Round Table. So, everyone who attends can bring their experiences, questions and concerns to share with the others. This is a great time to learn from each other. In order to obtain the Zoom link, you must register in advance. Here is how you can register:

Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering, you will receive a confirmation email containing information about joining the meeting, including the Zoom link. I hope that many of you can attend.

If you have any questions, contact, Loriell Grossling, LCSW
email: grossling.loriell@mayo.edu

All are welcome. You do not need to be a Mayo patient in order to attend the NETs support group. I would especially like to invite some of the newer NET members on Connect such as: @emilyliz16 @emilyfaith @terrycooper @jenniferrasigade @pamelasantacruz @ginnym3 @madso25 @rburt68

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