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Ruth Ann
@amyh2439

Posts: 6
Joined: May 10, 2016

Carcinoid cancer

Posted by @amyh2439, May 10, 2016

I would like to be in voplved in carcinoid cancer only as that is what I have

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@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.

Liked by Tresjur

Hello 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.

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.

https://mail.google.com/mail/u/0/#inbox/FMfcgxwBVqMhZHqwvsllZJLfXTQvnjvg?projector=1

@gaylejean

I’m also interested in experiences persons with neuroendocrine carcinoid tumor have had.

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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.

I 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?

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