1. < Neuroendocrine Tumors (NETs)

What topics do you want for the Neuroendocrine Support Group?

Posted by amandafl @amandafl, Sep 8, 2019

There’s a new Neuroendocrine Support Group that’s open to patients and caregivers over the phone (for those who aren’t local) and in person in Jacksonville, FL. Are there any topics that you want to discuss?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 9, 2019
In reply to @collielady "Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research..." + (show)
@collielady

Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research in familial carcinoid cancer. They were very interested in having my family join the research. But they needed proof of two relatives with NETs. And my half-sister refused to sign the release of information so her biopsy reports could go to NIH. And at that time they were not including Merkel Cell Carcinoma in their criteria. Needless to say sister and I were very disappointed. So now my focus is in finding out how family members could be checked for NETs so a diagnosis could be made early.
BTW - do you live in Jacksonville Beach?

Jump to this post

@collielady Hello Faith,

I'm sorry to hear that your family could not take advantage of the NIH study. That really is too bad. I live in SE Michigan so I'm not at all close to Jacksonville. I envy those of you who are close to the Mayo Clinic in Florida!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11, 2019
In reply to @coolwino "I would like to learn about various ways to deal with pain. There seem to be..." + (show)
@coolwino

I would like to learn about various ways to deal with pain. There seem to be several medications you can take with varying side effects. Some, like constipation, make the pain even worse. What other options are there? We have tried CBD, Essential Oils and that has not helped. Can we talk about pain pumps and how they work? Appreciate your putting on these support group meetings. I wish I had known about this when we started our journey at Mayo in 2016!! How come no one told us about Mayo Connect and the support group????

Jump to this post

Hi @coolwino, welcome to Connect. I'm sorry that you didn't find us when you started this unwanted journey in 2016, but I'm very glad you found us now. The in-person support group in JAX is new and luckily they are also accessible by teleconference so you don't have to be in Jacksonville to take part. Because you are following the NETs group, you will receive an email notification of upcoming meetings and the topic.

Pain and Cancer is a great topic to discuss here on Connect too. Might I suggest that you start a new discussion devoted to that topic to gather suggestions and coping strategies from other members. Here's how to start a new discussion:
Here's how to create a new discussion post.
1. Go to the NETs group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
2. Click START A DISCUSSION
3. Enter a title and message. For example "Pain and Cancer"
4. Click CREATE DISCUSSION.

You can find more tips about how to use Connect in the Get Started Guide founder in the footer at the bottom of any page on Connect. Here's the direct link: https://connect.mayoclinic.org/get-started-on-connect/

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 12, 2019

Hello @coolwino,

I would like to join Colleen, @colleenyoung, in inviting you to join Connect's NET discussion group. I'd enjoy getting to know you better. Please share as you are comfortable doing so: How long ago were you diagnosed with NETs? Was the location of your NETs in the digestive tract? What symptoms/diagnostic tests led your doctor to this diagnosis?

REPLY
nigelvw | @nigelvw | Oct 16, 2019

More control of BP during syndrome attacks.

REPLY
nigelvw | @nigelvw | Oct 16, 2019

Also relief from flushing pain during attacks. I flush from my eyes to my knees.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 16, 2019
In reply to @nigelvw "Also relief from flushing pain during attacks. I flush from my eyes to my knees." + (show)
@nigelvw

Also relief from flushing pain during attacks. I flush from my eyes to my knees.

Jump to this post

Great suggestions, @nigelw. I'm sure @amandafl will appreciate these.

Nigel are you able to attend the support group at the Mayo Jacksonville campus? If I recall correctly you said you were treated there, right?

REPLY
Alla | @19611ventura | Feb 6, 2020

My insurance keeps denying my DOTATATE PET scan. Is there anyone that has experienced this problem? I had pancreatic neuroendocrine tumor and a full Whipple surgery back in December 2016.

REPLY
trixie1313 | @trixie1313 | Feb 24, 2020

I would be interested to learning if there is anything new on neuroendocrine cancer noted in breast node and the chances of this spreading elsewhere. Mine was totally removed, but there is not a lot of information on NED originating in the breast.

REPLY
lindaldotson | @lindaldotson | Jan 12, 2023

I've only just been diagnosed with two neuroendocrine tumors in the liver. I'm very interested in reading the messages in this support group and also connecting with anyone else who has been diagnosed with liver tumors. Thank you!

REPLY
1 reply
sanjaykumar1 | @sanjaykumar1 | Jan 12, 2023

I undergone whipple surgery of pancreatic tumor 9 month back.after 1 months of surgery the chromogranin A level was 500.after every 3 months, the CGA test was done,and it is increasing from 500 to 2200,3300 and finally 9200 now.the MRI and dota petscan is OK.the doctor has no resolution for increasing CGA level.the only issue is that I have motion 3 to 4 times daily with no further weight loss after operation.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.