Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

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

@hopeful33250

I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

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Yes thank you

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@katinka58

He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

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I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

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@hopeful33250

Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

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He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

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@katinka58

My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

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Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

REPLY

My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

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@mb6502

I have metastasis to my bones as well - started in the femur and now spread to my ribs and scapula. I had three rounds of radiation, but the tumors still persist. Have your Doctor's done anything to treat the tumors in your bones and/or have they gone away or gotten smaller from the chemo? Also, do you experience any side effects from the bone lesions?
Thanks!

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The bone lesions are mostly all gone and not a concern. I can't attribute any side affects specifically to the bone lesions. I was really sick at the time. Sorry. What are you experiencing?

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@lauriejane

Hello. I’m happy to have found this site. I was diagnosed with a neuroendocrine tumor in my stomach in May 2024. I had a total gastrectomy on November 13, 2024. The uncertainty of what is to come has been difficult for me. I have a PET scan scheduled for late April and am very anxious about the results. Also navigating the nausea and bile reflux has been challenging. I look forward to gaining new information from this group.

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Hello @lauriejane and welcome to the NETs support group on Mayo Connect. I see that @dbamos1945 has already responded to your post with helpful ideas. I would also encourage you to look through the list of discussions in the NETs support group. Here is a link to that list (it goes on for several pages), https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Here are some discussion groups that speak of stomach NETs and gastroectomy:
https://connect.mayoclinic.org/discussion/partial-gastrectomy/
https://connect.mayoclinic.org/discussion/anyone-have-a-stomach-net/?pg=2#comment-897597
I understand you when you say, "The uncertainty of what is to come has been difficult for me." We have all felt that way and some of us still do.

I look forward to hearing from you again, @lauriejane. Please share a few more details about your NETs diagnosis. For example, when you say that you had a "total gastrectomy..." could you explain what that means, i.e., was the entire stomach removed? What type of symptoms were you having that led to the discovery of NETs?

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@mb6502

I have metastasis to my bones as well - started in the femur and now spread to my ribs and scapula. I had three rounds of radiation, but the tumors still persist. Have your Doctor's done anything to treat the tumors in your bones and/or have they gone away or gotten smaller from the chemo? Also, do you experience any side effects from the bone lesions?
Thanks!

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Hello @mb6502 and welcome to the NETs support group on Mayo Connect. On Connect there is a discussion group regarding spine and bone METs. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/net-in-the-spine/
As you read the posts you may find some helpful information.

Also, a consultation with a NETs specialist might be a good idea. Mayo Clinic has NET specialists at all three locations. Here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63. If you can't be seen at a Mayo facility, here is a listing of NET specialists throughout the U.S., https://www.carcinoid.org/for-patients/treatment/find-a-doctor

Do you have a lot of bone pain related to these tumors?

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@lauriejane

Hello. I’m happy to have found this site. I was diagnosed with a neuroendocrine tumor in my stomach in May 2024. I had a total gastrectomy on November 13, 2024. The uncertainty of what is to come has been difficult for me. I have a PET scan scheduled for late April and am very anxious about the results. Also navigating the nausea and bile reflux has been challenging. I look forward to gaining new information from this group.

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@lauriejane: If I were you I would read and take notes from the many Neuroendocrine Tumor posts given on Mayo Connect. Then you can post the few questions or needed explanations not resolved from your research.
You will be able to deal with the many details of your disease by absorbing and internalizing this info. You are not alone! We are here to help, but you will benefit by being persistent in your search for acceptance. Best…

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