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GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Posted by ksnozal @ksnozal, Jan 19, 2024

Hello fellow Mayo patients,
I am looking for other patients with the diagnosis of a very rare and aggressive Sarcoma called: GNET-Gastrointestinal Neuroectodermal Tumors. I'd like to connect with other patients with the disease to be a support to one another and share helpful information. Is anyone out there with this disease or know of someone who has it? I look forward to connecting. Thanks, Kris

Interested in more discussions like this? Go to the Sarcoma Support Group.

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hopefulmj | @hopefulmj | Aug 27 7:50pm
In reply to @yas1 "I hope you are doing well. My 17 year old daughter was also diagnosed with GNET..." + (show)
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I hope you are doing well. My 17 year old daughter was also diagnosed with GNET after a surgical excision of a tumor in her small bowel. Her follow up PET scan was clean. We are doing MRI/CT scans every three months with her first scan in about two weeks. She was only diagnosed about three months ago. What treatment options have you been given?

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We are also doing CT scans every three months, and very similar timeline as yours. No treatment options were given other than the CT scan and observation for now, since it does not seem like there is a proven benefit of any chemotherapy, immunotherapy, or radiation after surgical excision.

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yas1 | @yas1 | Aug 24 12:13pm
In reply to @hopefulmj "@yas1 @bschwall Would love to connect as well." + (show)
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@yas1 @bschwall
Would love to connect as well.

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I hope you are doing well. My 17 year old daughter was also diagnosed with GNET after a surgical excision of a tumor in her small bowel. Her follow up PET scan was clean. We are doing MRI/CT scans every three months with her first scan in about two weeks. She was only diagnosed about three months ago. What treatment options have you been given?

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hopefulmj | @hopefulmj | Aug 22 12:54am

Hi, I was recently diagnosed with GNET after a surgical excision, and wanted to connect with @ksnozal, @videvale, and @mijomi. I can’t seem to send private messages - but would love to hear your experiences.

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mijomi | @mijomi | Jul 19 2:28pm
In reply to @yas1 "What treatment, if any has your daughter done? My daughter has recently been diagnosed with GNET..." + (show)
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What treatment, if any has your daughter done? My daughter has recently been diagnosed with GNET tumor in her small bowel.

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Hello,
My daughter has only treated hers through cytoreduction surgeries (bulk tumor removal) with one of them having to do a small resection in her small intestine. Four surgeries total in the last 5 years. Since she has two young sons, she chooses not to do chemo at this point. Hers initially was found in her small bowel and reoccurs in the same area, with this last surgery a tumor grew near her large intestine. Thankfully nothing has metastasized to other organs so far.

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bschwall | @bschwall | Jul 15 12:38pm

@ksnozal and @mijomi

I was diagnosed with GNET in January 2023. I would love to connect if possible. I have been looking for anyone with the same diagnosis to share information and experiences with.

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yas1 | @yas1 | Jun 10 12:06pm
In reply to @mijomi "My daughter was diagnosed with GNET 4 years ago. She is a survivor and shows no..." + (show)
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My daughter was diagnosed with GNET 4 years ago. She is a survivor and shows no sign of disease right now. How are you?

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What treatment, if any has your daughter done? My daughter has recently been diagnosed with GNET tumor in her small bowel.

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Colleen Young, Connect Director | @colleenyoung | Jan 31 6:14pm
In reply to @ksnozal "Hi fellow GNET Sarcoma Survivor s I have been in the s hospital all of Christmas..." + (show)
Profile picture for ksnozal @ksnozal

Hi fellow GNET Sarcoma Survivor s
I have been in the s hospital all of Christmas and mostly the last few days from fall. I don’t have energy to reply. Please know I will reply when I’m more stable. Kris

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Thinking of you, Kris, and sending you a virtual hug for strength.

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ksnozal | @ksnozal | Jan 31 5:34pm
In reply to @colleenyoung "@videvale, I see that you would like to message members like @ksnozal and @mijomi privately. You..." + (show)
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@videvale, I see that you would like to message members like @ksnozal and @mijomi privately. You will be able to do so in a few days.

However, I'd also like to point out the benefit of sharing here in the support group where you receive support and information from several people and learn from each other. And other people with a similar diagnosis will join in.

As you mentioned in an earlier post, you found Mayo Clinic Connect because people shared on the forum about living with a GNET-Gastrointestinal Neuroectodermal Tumor. I hope you will continue to share your experiences here.

How is your wife doing? What treatment plan has been recommended for her?

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Hi fellow GNET Sarcoma Survivor s
I have been in the s hospital all of Christmas and mostly the last few days from fall. I don’t have energy to reply. Please know I will reply when I’m more stable. Kris

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Colleen Young, Connect Director | @colleenyoung | Jan 20 7:21am
In reply to @videvale "Hello @colleenyoung for sure I will share updates, as said at the moment my wife started..." + (show)
Profile picture for videvale @videvale

Hello @colleenyoung
for sure I will share updates, as said at the moment my wife started (just few weeks ago) a therapy with Votrient, this will go on for some months and then there will be a valuation. The side effects are important, mild painkillers are necessary daily. No surgery has been made or programmed at the moment. Did anyone else experience treatment with Votrient?

Thanks for this space, the Mayo Clinic Connect, who gives the opportunity to connect with persons sharing such specific experiences, and, in particular, thank you Kris for creating this post, I hope we will get in touch. I think that contacting directly is important too, it can give people the opportunity to share information that they would prefer not to share publicly.

A last question, if I would decide to contact Mayo Clinic, who should I contact? Can you share the Doctor or the department of reference? Given the extreme rarity of the disease it would be very important to know the specific few Doctors with experience on this to contact (here at Mayo Clinic or in other hospitals).

Thank you

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@videvale, should you and your wife wish to come to Mayo Clinic, you can start the request as an international patient here: http://mayocl.in/1mtmR63

Here's additional information about International Patient Services
https://www.mayoclinic.org/departments-centers/international
There are NETs specialists at all 3 locations of Mayo Clinic. You might also be interested in joining the next Neuroendocrine Cancer support group facilitated by a Mayo Clinic social worker. The next meeting is Feb 6

The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time.

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.

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