My sister had carcinoid cancer (I am guessing that is the same as neuroendocrine cancer, but in the gastrointestinal tract, right?)  But she didn't have breast cancer. She didn't take care of herself.  I have classic LCIS and nothing worse.  My oncologist said I didn't have to worry about a hereditary link with carcinoid.  You are probably a lot more informed than I am.  I didn't research it that much because my sister was bound and determined to do the opposite of whatever I talked about.  After I found that out, I didn't advise her on anything, so she wouldn't feel like her options were limited.

Was Dx July '13.  After Surgery in August found that the tumor was a neuro-endocrine tumor.  I consulted with 2 major cancer centers (Ohio State and MD Anderson).  Oncologists at both centers said it was a breast cancer with neuro endocrine features, not a neuro-endocrine tumor in my breast.  So I got the standard AC/Taxol bc chemo treatment.  I read the study you referenced and while I was happy these tumors were slow growing, mine was 8 out of 9 for aggressiveness.  I'm currently on arimidex and finished chemo in January.  Good luck.

hi there. I was diagnosed in nov 2013 after a liver biopsy. Tumors are diffusely through my liver. I was told it was neuroendocrine small cell carcinoma, breast primary on the table as I was going in to get my port! So yes, I hear you about the rushing! I was immediately started on carboplatin and etoposide. 6 rounds cleared my 7mm breast tumor and shrunk my liver tumors/turned to scar tissue. I had a second opinion at Johns Hopkins where the bc specialist googled my diagnosis in front of me and then told me I was probably never going to achieve remission. I went to Roswell cancer center in Buffalo where they actually gave me some hope (I'm 36 and have a now 1 year old at home) and said the tumors were NOT neuroendocrine but had their features. Very frustrating to be told a million different things. However, I am lucky in that mine is estrogen positive. I now take tamoxifen and get a lupron shot once a month. My cancer is stabilized. I have some liver pain, but my scan was unchanged as of last week. 

Dear Mtnlife, Welcome to the BCO community. We are sorry that your diagnosis brought you here but we are glad that you reached out. Please stay connected and keep us posted. The MOds

Hello, I'm writing on behalf of my sister-in-law. She was diagnosed back in June of 2015 with small cell neuro endocrine primary tumor of the breast. She had chemo almost immediately (not sure what kind) and the tumor nearly disappeared off the scan prior to her surgery in December 2015. Surgery path discovered a secondary BC, so the plan for radiation was halted to start a different chemo. Then in early Feb a spot on her skin appeared at the surgery site and that was cancer. That chemo was stopped and she was immediately started on radiation. Last week a scan showed a spot on her liver and possibly one in her lung. She's been treated by her local hospital outside of Chicago and her oncologist originally consulted with docs at Northwestern Hosp in Chicago. She and her husband are completely overwhelmed by this finding and I'm helping them locate options for a second opinion and/or to move her treatment. My question is whether anyone has experience with the The Neuroendocrine Program at Ochsner Medical Center/LSU in Louisiana and with Dr. Eugene Woltering. Or any experience with Neuroendocrine Cancer Clinic at the University of Iowa ? They appear to have received "the only Neuroendocrine SPORE (Specialized Programs of Research Excellence) grant in the country – a grant consisting of four independent NET research projects and clinical core facilities – from the National Cancer Institute." Mayo Clinic is an option too. Thank you in advance for any insight you can share.

Thank you very much for your responses and bumping. My sis in law was re-started on chemo again for the NET but it's been start and stop due to low numbers. Thanks again and I'm going to keep checking back.

checking in on sister in law. I reside in Illinois and was diagnosed with small cell breast in 10/16. I am nearing the end of my chemo treatment (A/C +Taxol). I got my 2nd opinion from Dr Cobleigh at Rush and am being treated at Good Shepherd. Where did your sister in law continue her treatment? So far my cancer is contained in the breast, and no lymphnode involvement but my surgery will confirm 100%. I would recommend seeing Dr Cobleigh at Rush, it's local and she is a world renowned Breast Cancer Oncologist. Please keep us posted on your sister in law, hoping that things have improved and that she I saw doing well.

Hi there,

I was diagnosed two months ago and have been searching for answers. They say I have neuroendocrine breast cancer, but it's definitely breast cancer, not small cell. From the little I can find, that's good, although the overall diagnosis is not. I'm stage 2a -- small tumor, 1 lymph node, ER+, PR+, HER-, genomic testing shows high risk of recurrance

I had a lumpectomy and the margins were not clear so had a second surgery. Now I'm in chemo (4 cycles AC/4 cycles of Taxol) and then will have radiation followed by 10 years (god willing) of endocrine therapy.

My onc says this behaves like BC, not like a classic NET, and that I should relax. She has treated them before and that I have a good chance. So, trying to stay positive, but the lack of info is very off-putting.

I got a second opinion, and he concurred, so I feel pretty okay...

Not sure if this helps anyone, but I like knowing there is at least a small group to turn to!

I have two sisters--one was diagnosed with triple-positive IBC five years ago and is well today, the other was diagnosed with neuroendocrine BC last fall. She's about to be finished with chemo and will have a PET scan before her mastectomy in June. I'd never heard of neuroendocrine BC before my sister's diagnosis.

GraceB1, with all the breast cancer in our family, my middle sister and I did genetic testing. We were both negative for any known mutations. But I'm very glad I had the testing done--now I can tell my sons that as far as I know, they aren't carrying any genetic mutations that would predispose them, or their children, to these cancers.

Genetic testing doesn't change treatment, unless it's for preventive reasons or it turns up with a mutation that's known to lead to ovarian or colon cancers, and then you can be extra vigilant.

graceb1 How are you doing? I have a similar diagnosis and my doc has treated primary NE breast cancer before and feels confident. So, that's good, but it sure is a lonely diagnosis. Hope you have found more people and more info.