I talking about the sudden sugar drops that make you so weak that you almost can't stand up' they are similar to the sugar drops that diabetics have. my diabetic friend told me how to deal with them. you need carbs and protein so a peanut butter sandwich helps. My carcinoid group leader told me to keep glucose tablets with me away from home because that also helps It had been a long while since I had one, so it shook me up. I get nervous when it gets close to scan time and that episode did not help my nerves. I am in pretty good shape right now and I don't want to start having serious problems again.
Yes, @joannem, Carcinoid cancer is difficult to explain. I always say that it is a rare form of slow growing cancer and leave it at that. I'm interested in your support group. What area do you live in? We have one group in Michigan, however, it is a 3 hour drive from where I live. There is so much that we can learn from each other.
Colleen Young, Connect Director | @colleenyoung | Jan 19, 2017
Hi everyone,
The number of members talking about carcinoid and neuroendocrine tumors has grown so much that it was time to move the discussions into a group dedicated to Neuroendocrine Tumors (NETs). Please visit the new group page here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ and follow the group by clicking + FOLLOW in the corner of the group description.
Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and be able to welcome new members to the group.
Thank you to @hopeful33250, volunteer patient mentor, for helping us form this group of patients helping patients.
To all of our NET members who live in or near the Minnesota area, I wanted you to know about a Mayo NET Specialist who will be speaking in November at a Gilda Club Meeting. Here is the information:
Thorvardur R. Halfdanarson, M.D whom trained under Thomas D'orisio at University of Iowa and is now at the Mayo Clinic will be speaking on the latest developments and treatments for Neuroendocrine Cancer at Gilda's Club in Minnetonka, MN on Thursday, November 15, 2018 from 5:00 - 6:30 PM.
Gilda’s Club Twin Cities
10560 Wayzata Blvd
Minnetonka, MN 55305
My last experience (the best yet) I went to U of Michigan. They have a doctor there who removed a small lesion through an endoscopy procedure. U of Michigan also has a doctor who specializes in carcinoids, his name is Del Valle. I have an appointment with him next week. I believe it is important to be connected with a good teaching/research institution when you are dealing with something unique or rare, the hospital in your neighborhood might not be your best choice. It may involve some extra driving but it is worth the time and expense.
I can second Teresa’s advice. My rectal carcinoid was discovered by accident during my first colonoscopy. But that doc and three specialists were wrong about the disease and prognosis. Five years later I found a specialist in another state who correctly predicted my type of carcinoid might return, when and where. Now there are more specialists than just the three I learned of in 2005. You MUST find a specialist and then thoroughly research his/her credentials and experience. You may have to travel, but it is your life.
To all of our NET members who live in or near the Minnesota area, I wanted you to know about a Mayo NET Specialist who will be speaking in November at a Gilda Club Meeting. Here is the information:
Thorvardur R. Halfdanarson, M.D whom trained under Thomas D'orisio at University of Iowa and is now at the Mayo Clinic will be speaking on the latest developments and treatments for Neuroendocrine Cancer at Gilda's Club in Minnetonka, MN on Thursday, November 15, 2018 from 5:00 - 6:30 PM.
Gilda’s Club Twin Cities
10560 Wayzata Blvd
Minnetonka, MN 55305
It is so refreshing to see the conferences, support groups, blogs and available NET specialists that are now available. So very different from when I was diagnosed back in 2008. I felt so alone back then and had no idea of the how/what/who. If I was diagnosed today, with what is now available for research and understanding, I would have made a difference choice than in 2008. I am so pleased with the continuing increased awareness for the NET community.
Great comment! Yes, I feel the same way. When I had my first surgery in 2003 I would have done things much differently. At least the future generation of NET patients will have less guessing than we did.
Just wanted to take a moment to wish you a Happy New Year. I hope that 2019 is a good one for you and that you experience good health during this coming year.
I also wanted to point out to you a new discussion that was started by the Mayo Cancer Education Center. It is titled, "Take a Moment to Embrace Gratitude This Season." While cancer and gratitude do not seem to go together at first glance, if we look further we can see that there is something we can all be grateful for. Perhaps it is a kind oncologist, or persevering through a difficult treatment or finding support from family and friends. What are you thankful for?
Mayo's Dr. Thor gave a presentation last year on the topic of NETs. As many of you may be new to this unique diagnosis, I thought you might find this video presentation helpful.
I had surgery at Mayo Clinic in Rochester, MN in 2016. 3 feet small bowel, 12 tumors, 13 lymph nodes removed. Don’t Have syndrome but lots of pain from adhesions. Have had scans past three years showing no return. Every 6 mos blood work.
Diagnosed during exploratory. Original diagnosis was Messenteric Paniculitis. Now am followed by oncologist at Dana Farber Cancer Institute.
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Yes, @joannem, Carcinoid cancer is difficult to explain. I always say that it is a rare form of slow growing cancer and leave it at that. I'm interested in your support group. What area do you live in? We have one group in Michigan, however, it is a 3 hour drive from where I live. There is so much that we can learn from each other.
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Like -
Helpful -
Hug
1 ReactionHi everyone,
The number of members talking about carcinoid and neuroendocrine tumors has grown so much that it was time to move the discussions into a group dedicated to Neuroendocrine Tumors (NETs). Please visit the new group page here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ and follow the group by clicking + FOLLOW in the corner of the group description.
Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and be able to welcome new members to the group.
Thank you to @hopeful33250, volunteer patient mentor, for helping us form this group of patients helping patients.
To all of our NET members who live in or near the Minnesota area, I wanted you to know about a Mayo NET Specialist who will be speaking in November at a Gilda Club Meeting. Here is the information:
Thorvardur R. Halfdanarson, M.D whom trained under Thomas D'orisio at University of Iowa and is now at the Mayo Clinic will be speaking on the latest developments and treatments for Neuroendocrine Cancer at Gilda's Club in Minnetonka, MN on Thursday, November 15, 2018 from 5:00 - 6:30 PM.
Gilda’s Club Twin Cities
10560 Wayzata Blvd
Minnetonka, MN 55305
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Like -
Helpful -
Hug
1 ReactionI can second Teresa’s advice. My rectal carcinoid was discovered by accident during my first colonoscopy. But that doc and three specialists were wrong about the disease and prognosis. Five years later I found a specialist in another state who correctly predicted my type of carcinoid might return, when and where. Now there are more specialists than just the three I learned of in 2005. You MUST find a specialist and then thoroughly research his/her credentials and experience. You may have to travel, but it is your life.
-
Like -
Helpful -
Hug
3 ReactionsIt is so refreshing to see the conferences, support groups, blogs and available NET specialists that are now available. So very different from when I was diagnosed back in 2008. I felt so alone back then and had no idea of the how/what/who. If I was diagnosed today, with what is now available for research and understanding, I would have made a difference choice than in 2008. I am so pleased with the continuing increased awareness for the NET community.
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Like -
Helpful -
Hug
4 Reactions@tresjur
Great comment! Yes, I feel the same way. When I had my first surgery in 2003 I would have done things much differently. At least the future generation of NET patients will have less guessing than we did.
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Like -
Helpful -
Hug
1 ReactionHello All:
Just wanted to take a moment to wish you a Happy New Year. I hope that 2019 is a good one for you and that you experience good health during this coming year.
I also wanted to point out to you a new discussion that was started by the Mayo Cancer Education Center. It is titled, "Take a Moment to Embrace Gratitude This Season." While cancer and gratitude do not seem to go together at first glance, if we look further we can see that there is something we can all be grateful for. Perhaps it is a kind oncologist, or persevering through a difficult treatment or finding support from family and friends. What are you thankful for?
Please join me in reading this News Feed, found at this link, https://connect.mayoclinic.org/page/cancer-education-center/newsfeed/take-a-moment-to-embrace-gratitude-this-season-1/ and if possible, try posting one thing about cancer that you can be grateful for.
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2 ReactionsMayo's Dr. Thor gave a presentation last year on the topic of NETs. As many of you may be new to this unique diagnosis, I thought you might find this video presentation helpful.
https://mail.google.com/mail/u/0/#inbox/FMfcgxwBVqMhZHqwvsllZJLfXTQvnjvg?projector=1I had surgery at Mayo Clinic in Rochester, MN in 2016. 3 feet small bowel, 12 tumors, 13 lymph nodes removed. Don’t Have syndrome but lots of pain from adhesions. Have had scans past three years showing no return. Every 6 mos blood work.
Diagnosed during exploratory. Original diagnosis was Messenteric Paniculitis. Now am followed by oncologist at Dana Farber Cancer Institute.
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Helpful -
Hug
1 ReactionI appreciate your sharing this experience, @musicflowers4u. I'm glad to hear that you don't have any syndrome symptoms and also that there is no indication of a return of the NETs. I can understand the pain from adhesions, though. Are you familiar with our Connect discussions on adhesions? If not, please check them out at, https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/?orderby=DESC#chv4-comment-stream-header.
I would also like to invite @thull and @nancybev to this discussion as they have lots of experiences with adhesions from bowel surgeries.
If you care to share more, @musicflowers4u: Do you have obstructions related to the adhesions or just pain? How are your symptoms being treated?