Anyone have neuroendocrine tumor (NETs) of the breast?

Posted by trixie1313 @trixie1313, Feb 25 8:15am

I am curious if anyone else has been diagnosed with neuroendocrine of breast. My first tumor was infiltrating ductal cancer. I was worried about cancer being in the other breast when I requested MRI at which time the second tumor was found in the same breast on the opposite side and diagnosed as NET. Am being followed with PET scans every 6 months now and, so far, so good. But it has also been explained to me there are not many patients with this showing up in the breast so very few studies on how to proceed.

@trixie1313, can you clarify the acronym NED in this case. I'm familiar with NED meaning "no evidence of disease" and NET to mean "neuroendocrine tumor." I found reference in the literature to neuroendocrine carcinoma of the breast (NECB) and invasive breast carcinoma with neuroendocrine differentiation (IBC-NED).

Is your use of NED neuroendocrine differentiation?

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@colleenyoung

@trixie1313, can you clarify the acronym NED in this case. I'm familiar with NED meaning "no evidence of disease" and NET to mean "neuroendocrine tumor." I found reference in the literature to neuroendocrine carcinoma of the breast (NECB) and invasive breast carcinoma with neuroendocrine differentiation (IBC-NED).

Is your use of NED neuroendocrine differentiation?

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@colleenyoung
Sorry – misspelled. NET is the correct acronym. I was told that the tumor had neuroendocrine differentiation which was the same as neuroendocrine cancer. This was after three tumor boards and a second opinion by TheSecondOpinion.org in San Francisco comprised of experts from UCSF, Kaiser, Presbyterian Medical Center, and Stanford.

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@trixie1313

@colleenyoung
Sorry – misspelled. NET is the correct acronym. I was told that the tumor had neuroendocrine differentiation which was the same as neuroendocrine cancer. This was after three tumor boards and a second opinion by TheSecondOpinion.org in San Francisco comprised of experts from UCSF, Kaiser, Presbyterian Medical Center, and Stanford.

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@trixie1313 thanks for clarifying. I corrected the typo in the title. Now to find other members who have breast NETs to connect you with. I'll do my best.
So you have 2 DIFFERENT kinds of breast cancer in the same breast! What are the chances of that? Do you have any spread (mets) beyond the the breast?

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@colleenyoung

@trixie1313 thanks for clarifying. I corrected the typo in the title. Now to find other members who have breast NETs to connect you with. I'll do my best.
So you have 2 DIFFERENT kinds of breast cancer in the same breast! What are the chances of that? Do you have any spread (mets) beyond the the breast?

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@colleenyoung
Unfortunately, 3/7 nodes were cancerous with one eroding, or metastatic, into the lymph nodes (from the first tumor). The second tumor was poorly differentiated carcinoma consistent with breast primary consistent with neuroendocrine differentiation. TheSecondOpinion.org Stanford oncologist felt I should be treated with oat cell ca treatment, however, after a second tumor board at my facility and my oncologist, it was felt to wait and watch with PET scans every 6 months. So far, so good – two PET scans have been clear and two mammograms as well have been. There is very little that I can find with NET originating in breast – it usually stars elsewhere in the body and that is why I am curious if there are any other patients with it originating in the breast.

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@trixie1313

@colleenyoung
Unfortunately, 3/7 nodes were cancerous with one eroding, or metastatic, into the lymph nodes (from the first tumor). The second tumor was poorly differentiated carcinoma consistent with breast primary consistent with neuroendocrine differentiation. TheSecondOpinion.org Stanford oncologist felt I should be treated with oat cell ca treatment, however, after a second tumor board at my facility and my oncologist, it was felt to wait and watch with PET scans every 6 months. So far, so good – two PET scans have been clear and two mammograms as well have been. There is very little that I can find with NET originating in breast – it usually stars elsewhere in the body and that is why I am curious if there are any other patients with it originating in the breast.

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Hello @trixie1313,

I know that we have posted before and yes NETs in the breast are very rare. I have had three surgeries for NETs, however, they have all been in the GI tract which is more typical for NETs. Just wondering, have you had any symptoms of carcinoid syndrome (flushing of the face, diarrhea, rash, etc.)? Have you taken any treatment just as monthly injections of Octreotide?

You might find some helpful information at the Carcinoid Foundation website. Here is the link,
https://www.carcinoid.org/for-patients/general-information/a-review-of-carcinoid-cancer/
How are you feeling now?

Liked by trixie1313

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@hopeful33250

Hello @trixie1313,

I know that we have posted before and yes NETs in the breast are very rare. I have had three surgeries for NETs, however, they have all been in the GI tract which is more typical for NETs. Just wondering, have you had any symptoms of carcinoid syndrome (flushing of the face, diarrhea, rash, etc.)? Have you taken any treatment just as monthly injections of Octreotide?

You might find some helpful information at the Carcinoid Foundation website. Here is the link,
https://www.carcinoid.org/for-patients/general-information/a-review-of-carcinoid-cancer/
How are you feeling now?

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@hopeful33250
Wow – what a great article and information. No, I didn't know about octreotride. I do have itching and rash. So far, the oncologists feel wait and watch along with aromatase inhibitors as well as every 6-month PET scans. I will ask now about octreoscan vs. PET scan. Thank you so much for this information…it's a quandary as starting in the breast is quite rare. I feel confident in my care so far and physically am feeling pretty good.

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trixie1313
@trixie1313 I'm glad the information was helpful to you. I suppose by PET scan you are referring to the Gallium 68 scan?

Here is some information about this specialized PET scan for NETs, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

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