1. < Neuroendocrine Tumors (NETs)

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.

kaiulani | @kaiulani | Mar 17 12:08pm
In reply to @sadragliz "has anyone been contacted to do a research study. I think since this cancer is rare..." + (show)
@sadragliz

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

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I live in Canada: aside from having a Whipple / liver debulking in October 2023 and starting monthly lanreotide injections in March of 2024, the main “treatment” that has been offered to me (repeatedly) is MAiD (a handy acronym for “medical assistance in dying”). I’m still waiting and waiting and waiting some more to hear about PRRT. I have NEVER been contacted about any clinical studies. I have stage 4 pNET which is ruthlessly advancing but I don’t even have a follow-up appointment. That is the state of healthcare in Canada SMH

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1 reply
dbamos1945 | @dbamos1945 | Mar 17 1:17pm
In reply to @kaiulani "I live in Canada: aside from having a Whipple / liver debulking in October 2023 and..." + (show)
@kaiulani

I live in Canada: aside from having a Whipple / liver debulking in October 2023 and starting monthly lanreotide injections in March of 2024, the main “treatment” that has been offered to me (repeatedly) is MAiD (a handy acronym for “medical assistance in dying”). I’m still waiting and waiting and waiting some more to hear about PRRT. I have NEVER been contacted about any clinical studies. I have stage 4 pNET which is ruthlessly advancing but I don’t even have a follow-up appointment. That is the state of healthcare in Canada SMH

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@kaiulani: I would not accept this lack of treatment! Search out a Neuroendocrine Cancer Specialist and be persistent! Most Cancer Hospitals have information on specialists that will help you. There are many treatments that are available depending on your medical issues and you need their guidance. I know it seems like a brick wall, but other Canadian NET patients have been successful in obtaining quality care. I wish you the best…

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1 reply
kaiulani | @kaiulani | Mar 17 1:51pm
In reply to @dbamos1945 "@kaiulani: I would not accept this lack of treatment! Search out a Neuroendocrine Cancer Specialist and..." + (show)
@dbamos1945

@kaiulani: I would not accept this lack of treatment! Search out a Neuroendocrine Cancer Specialist and be persistent! Most Cancer Hospitals have information on specialists that will help you. There are many treatments that are available depending on your medical issues and you need their guidance. I know it seems like a brick wall, but other Canadian NET patients have been successful in obtaining quality care. I wish you the best…

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Thank you for your reply, I really appreciate you! I have an endocrinologist in my city who is responsible for my care but I am aware that, as a 61 year old Canadian born woman who was a litigation lawyer for over 32 years, I am definitely not the sort of person worth saving (wink)

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mb6502 | @mb6502 | Mar 21 8:19pm
In reply to @tomrennie "My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being..." + (show)
@tomrennie

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being 8x6cm. There were traces of the cancer throughout my body mostly in my bones. I started captem. It took a few cycles but everything started shrinking. After 13 cycles, my pancreas and liver were working again, so I was switched to a lower dose of maintenance capecitabine. After 1.5 years of just capecitabine, everything is still stable. Keep the faith. There is hope.

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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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2 replies
lauriejane | @lauriejane | Mar 22 9:25am
In reply to @hopeful33250 "Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others..." + (show)
@hopeful33250

Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.

With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?

Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.

I look forward to hearing from you!

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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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2 replies
panorman3 | @panorman3 | Mar 22 10:59am

Does anyone know how long the tumor will cause you to bed or death. anyone know of someone whos has died from these tumors?

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billbo | @billbo | Mar 23 9:19am

Every kind of NETS and their location and advance of tumors results in different prognosis for everyone. Some people have lived with monthly injections for many years, 10 or more! Good luck.

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dbamos1945 | @dbamos1945 | Mar 23 7:04pm
In reply to @lauriejane "Hello. I’m happy to have found this site. I was diagnosed with a neuroendocrine tumor in..." + (show)
@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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 23 8:13pm
In reply to @mb6502 "I have metastasis to my bones as well - started in the femur and now spread..." + (show)
@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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 24 9:11am
In reply to @lauriejane "Hello. I’m happy to have found this site. I was diagnosed with a neuroendocrine tumor in..." + (show)
@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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