1. < Neuroendocrine Tumors (NETs)

Has the NET found in my axilla or arm pit likely to have spread?

Posted by lenny48ca @lenny48ca, Mar 19, 2023

Results of a biopsy indicated a NET. Everything I’ve read says they can start anywhere in the body; but is where it first starts an indicator of whether or not it has already spread to other parts of the body? What is the mortality rate for a typical NET, if there is such a thing?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 20, 2023

Hello @lenny48ca and welcome to the NETs discussion on Mayo Clinic Connect. I don't suppose there is an answer to your question about a mortality rate for NETs. Like any cancer, NETs does not follow a particular pattern and each person's journey is unique to them.

If you read through the other discussions in this support group, you will find different stories of treatment and of life after treatment. For example, I am a 20-year survivor of NETs in the upper digestive tract, having had my first surgery in 2003 and my last surgery in 2016. I have had no symptoms; my NET was originally found incidentally. So far, surgery has been my only treatment and there appears to be no indication of metastasis.

There are some things that are important after you receive a NET diagnosis, though, which can certainly help you. First, learn all you can about this rare form of cancer. The Carcinoid Cancer Foundation (CCF) is a good place to start. Here you will find videos of NET specialists talking about the ways to diagnose, follow-up as well as the latest treatment modalities. Here is the website:
http://www.carcinoid.org.
Second, it is important to have at least one consultation (in-person or virtual) with a NET specialist. Here is a link to a list of NET specialists throughout the world,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I hope that this helps you as you begin this journey with NETs. If you are comfortable sharing more, I wondering: How was your NET diagnosed (what tests were done, etc.); what, if any, were your symptoms, has any treatment been suggested?

REPLY
1 reply
lenny48ca | @lenny48ca | Mar 20, 2023

Thanks for your response to my inquiry. I discovered my NET when I was putting on underarm deodorant. When I pressed the stick of deodorant to my arm pit I could feel a lump under my skin. One CT scan and a biopsy later my diagnosis was made. I wont speak to an oncologist until the 31st. The wait is unbearable.

REPLY
1 reply
davisnrn | @davisnrn | Mar 20, 2023
In reply to @lenny48ca "Thanks for your response to my inquiry. I discovered my NET when I was putting on..." + (show)
@lenny48ca

Thanks for your response to my inquiry. I discovered my NET when I was putting on underarm deodorant. When I pressed the stick of deodorant to my arm pit I could feel a lump under my skin. One CT scan and a biopsy later my diagnosis was made. I wont speak to an oncologist until the 31st. The wait is unbearable.

Jump to this post

My NET was discovered incidentally to an abdominal CT—it was a walnut-size tumor in the mesentery (webbing between the intestines) biopsied positive as NET. It was a secondary NET, and the primary was found at surgery in the lining of the small intestine and was the size of a BB. NETs are different from other kinds of tumors so do whatever you can to be seen by oncologists that are NET experts. And you are right. The waiting is nerve wracking but worth it to get all the information and answers you can—for that will increase your strength and power—plus soak up all the support and care for whatever is next. Good luck going forward.

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lenny48ca | @lenny48ca | Apr 30, 2023

The oncologist who diagnosed the NET, a fast growing tumor in my right axcilla or armpit. After more scans and an MRI he is now calling my cancer Merkel Cell carcinoma. It’s all greek to me but the impression I have is the it is not only rare but also very aggressive and likely to spread. Has anyone out there any experience or expertise on the subject Merkel Cell carcinoma?

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lenny48ca | @lenny48ca | May 1, 2023
In reply to @hopeful33250 "Hello @lenny48ca and welcome to the NETs discussion on Mayo Clinic Connect. I don't suppose there..." + (show)
@hopeful33250

Hello @lenny48ca and welcome to the NETs discussion on Mayo Clinic Connect. I don't suppose there is an answer to your question about a mortality rate for NETs. Like any cancer, NETs does not follow a particular pattern and each person's journey is unique to them.

If you read through the other discussions in this support group, you will find different stories of treatment and of life after treatment. For example, I am a 20-year survivor of NETs in the upper digestive tract, having had my first surgery in 2003 and my last surgery in 2016. I have had no symptoms; my NET was originally found incidentally. So far, surgery has been my only treatment and there appears to be no indication of metastasis.

There are some things that are important after you receive a NET diagnosis, though, which can certainly help you. First, learn all you can about this rare form of cancer. The Carcinoid Cancer Foundation (CCF) is a good place to start. Here you will find videos of NET specialists talking about the ways to diagnose, follow-up as well as the latest treatment modalities. Here is the website:
http://www.carcinoid.org.
Second, it is important to have at least one consultation (in-person or virtual) with a NET specialist. Here is a link to a list of NET specialists throughout the world,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I hope that this helps you as you begin this journey with NETs. If you are comfortable sharing more, I wondering: How was your NET diagnosed (what tests were done, etc.); what, if any, were your symptoms, has any treatment been suggested?

Jump to this post

I discovered my tumor putting on underarm deodorant when I felt a lump in my right armpit. A needle biopsy was done as well as c/t and pet scans followed by an MRI, which revealed an abnormality on my pancreas. I’m undergoing a biopsy on that abnormality on Friday. My oncologist tells me one of three possible outcomes are possible. The abnormality could be 1) nothing or 2) a new cancer or 3) the same cancer as in my armpit. The worst outcome is the last, I think. I have surgery scheduled for the May 26th, although my surgery might be canceled followed by palliative care. It is upsetting that I will have to wait three more weeks after the biopsy for the tumor in my armpit to be removed. It’s grown now to the size and feel of an almost ripe avocado.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 1, 2023
In reply to @lenny48ca "I discovered my tumor putting on underarm deodorant when I felt a lump in my right..." + (show)
@lenny48ca

I discovered my tumor putting on underarm deodorant when I felt a lump in my right armpit. A needle biopsy was done as well as c/t and pet scans followed by an MRI, which revealed an abnormality on my pancreas. I’m undergoing a biopsy on that abnormality on Friday. My oncologist tells me one of three possible outcomes are possible. The abnormality could be 1) nothing or 2) a new cancer or 3) the same cancer as in my armpit. The worst outcome is the last, I think. I have surgery scheduled for the May 26th, although my surgery might be canceled followed by palliative care. It is upsetting that I will have to wait three more weeks after the biopsy for the tumor in my armpit to be removed. It’s grown now to the size and feel of an almost ripe avocado.

Jump to this post

@lenny48ca

I can certainly understand that the uncertainty is disconcerting to you as it would be to any of us. However, please remember that you always have the right to get a second opinion. If you live near a multi-disciplinary health care center (like a university medical school, a renowned cancer center, or a facility like Mayo Clinic), this would be the best place for another opinion.

I hope that the biopsy results are better than expected. Will you post again with any concerns or questions?

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