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Topic: Neuroendocrine Carcinoma

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Sep 12, 2013 12:05PM

2timer wrote:

According to my path report I have " invasive poorly differentiated neuroendocrine carcinoma with small cell differentiation"  Apparently this is pretty rare often associated with other types of cancers.  Has anyone here ever heard of this?  I get the fact that it's high grade, I just don't understand what this type of bc is.  I assume it's not IDC.  Any informtion would be helpful.  Thanks.

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 6/25/2007 Breast Hormonal Therapy 10/31/2007 Dx 7/2/2013, IDC, 1cm, Stage IIA, Grade 3, 1/9 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/23/2013 AC + T (Taxol)
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Sep 12, 2013 12:47PM Bren-2007 wrote:

Hi 2timer,

I did some checking on the net and found that NEC tumor is not related to breast cancer.  What I read said it was most often associated with lung and pancreatic cancer. 

I am so sorry you are going through this.  I wish you all the best.  Please keep us posted on how you're doing.

hugs,

Bren

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Sep 12, 2013 01:55PM lekker wrote:

I second kayb's recommendation about finding a specialist. Primary neuroendocrine tumors (NET) of the breast are exceptionally rare so you should try to find someone who's treated it before. What other scans have you had so far? I only ask because NET's can originate somewhere else in the body and metastasize to the breast so you need to know exactly what you're dealing with. A friend of mine had a very rare primary ovarian carcinoid (a type of NET) and was staged at Stanford. At first they assumed that it was a metastasis from the GI tract or lungs, but after a lot of scans and tests, it was confirmed to be a primary. The only way to know is to go looking for it elsewhere. The website carcinoid.org has a list of NET specialists but there are many different kinds so you might have to make some calls to find someone with experience with breast NET's.

Colorectal carcinoma in situ January 2000 (age 30), and now this... Dx 7/2012, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/6/2012 Lumpectomy: Right Surgery 10/3/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/12/2013 Reconstruction (left); Reconstruction (right) Surgery 4/11/2013 Prophylactic ovary removal
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Sep 12, 2013 03:56PM curveball wrote:

@2timer, I (unless I have misunderstood my doctor) have a mixture of breast cancer and neuroendocrine cancer AKA carcinoid. I'm being treated with both AI and octreotide, which is a medication used for treatment carcenoid tumors. Best wishes for finding a specialist and a successful course of treatment.

Oncotype score 28--Age 56 at initial DX--mets found at 57 (but I suspect they were there from the start)--mixed IDC & carcenoid (neuroendocrine) tumor. Octreotide (a carcenoid treatment) June-Sept 2013, failed. Dx 3/23/2012, IDC, 1cm, Stage IB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Chemotherapy 7/18/2012 CMF Hormonal Therapy 1/10/2013 Arimidex (anastrozole) Dx 2/26/2013, IDC, 1cm, Stage IV, Grade 2, 1/13 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 6/3/2013 Aromasin (exemestane) Chemotherapy 10/30/2013 Taxol (paclitaxel) Chemotherapy 1/22/2014 Doxil (doxorubicin) Hormonal Therapy 4/7/2014
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Sep 18, 2013 05:37PM - edited Sep 18, 2013 05:37PM by Bren-2007

2timer .. I've been thinking about you.  I hope you were able to get more information.  If you get a chance, please write and let us know how you're doing.

hugs,

Bren

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Sep 19, 2013 11:52AM 2timer wrote:

Thanks for asking Bren



Went to see my old oncologist yesterday.  I had seen him for 5.5 years for the 2007 DCIS dx.  He never did much more than do a breast exam and give me a script for tamoxifen but I wanted to get his input on my current cancer dx so I agreed to have the pathology sent to him, although I will probably be treated by the oncologist at the NCI hospital where I got my surgery.  I will see her next week and get my treatment/chemo plan.

I guess the type of cancer I have is rare, affecting around 5% of breast cancers.  It is also "small cell" and very agressive.  This type of cell is most often associated with lung cancer but can show up as a primary cancer in other sites.  I asked him if this was breast cancer and not lung cancer that metastasized to the breast.  He said it was breast cancer.  He also said that because of the type of cancer cell I had, he thinks I should use a chemo that is more related to small cell cancers as opposed to the tradtional breast cancer chemo's.  I will definately have to have chemo due to the one node they found in pathology (after 8 clear sentinel nodes!) and because of the positive LVI (drat!) and due to the fact that the cancer is rare and agressive.  

I will also have to have scans.  The scans they give you to see if the cancer has metastasized.  This is something I had not really expected and it is very hard for me to think about.  I'm still considered stage 2a which I thought was early enough to preclude having these tests.  I'll see what the onc says next week and if they are scheduled, I'll go have them but I will be more frightened, worried and stressed than I have ever been about any test I have ever had.  Also, due to the fact that I have already had whole breast radiation, I cannot get anymore radiation and may have to have motr of my lymph nodes removed.  I don't know, I'll ask next week.

On a more positive note, Monday they removed the rest of my drains (4) -- I orignally had six of them and cleared me to drive.  I'm beginning to feel a bit more "normal" again and that makes me happy.  I'm dealing with as best as I can but I am truly dreading the next steps.  So I am learning to take things one step at a time and not get ahead of myself.  It is what it is and will be what it will be, and no amount of worrying on my part will make things any different -- just make me more miserable.  

Thanks for asking

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 6/25/2007 Breast Hormonal Therapy 10/31/2007 Dx 7/2/2013, IDC, 1cm, Stage IIA, Grade 3, 1/9 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/23/2013 AC + T (Taxol)
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Sep 19, 2013 05:06PM Bren-2007 wrote:

Hi 2timer,

Thanks for writing an update.  It must be so scary to have such a rare form of breast cancer ... and then to be told you have to have scans.

Glad to hear you got your drains removed ... that must feel so much better.

It's great that you are feeling a "bit more normal."  Not an easy thing to accomplish right now.  Taking it one step at a time is a good idea.  It's just that sometimes that's so hard to do.

Please keep us up to date with how you're doing ... we're here for you.

hugs,

Bren

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Sep 27, 2013 03:12PM Bren-2007 wrote:

Hi 2timer .. wondering if you got your treatment plan this week.  And how you're doing.  Are you holding up okay?

When you get a chance, write a note and let us know how you're doing.

hugs,

Bren

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Sep 27, 2013 03:22PM 2timer wrote:

Saw the onc yesterday.  She said I had IDC with neuroendricine (sp?) features.  So I'll just get the regular chemo regimin (dose dense).  However I saw my old onc that from the hospital I used to use and he said I should use the platinum drugs.  So now I'm confused.  I have an apt at MD Anderson in 3 weeks so maybe they can help me decide.  Thanks for asking.

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 6/25/2007 Breast Hormonal Therapy 10/31/2007 Dx 7/2/2013, IDC, 1cm, Stage IIA, Grade 3, 1/9 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/23/2013 AC + T (Taxol)
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Sep 27, 2013 11:45PM momof3boys wrote:

My husband had neuroendocrine cancer (carcinoid), there is a special three day scan that they do (whole body)... I'm sure this'll have that machine at md anderson. I believe it's called an octreoscan? Neuroendocrine cancers also have markers in blood tests.. Chromagranin...serotonin

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 29, 2013 12:02PM Bren-2007 wrote:

Hi 2timer,

It does sound confusing. Glad you have a consult at MD Anderson ... I hope they have the answers you need.

hugs,

Bren

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Oct 21, 2013 02:04PM - edited Oct 21, 2013 02:22PM by 2timer

Update.

I went to MD Anderson a week ago to get a 2nd opinion on my breast cancer. In the interim between seeing my onc here and at MDA my onc changed my treatment to etopside/cisplatin based on the initial pathology after she presented my pathology in a meeting about breast cancer cases.

I saw the MDA onc and she said she couldn't make a determination because they never got my slides (!) and thus their own pathologists had not looked at my actual tumor cells. I was disappointed to say the least. However, they were able to get the slides the next day, and this morning the MDA onc called with her recommendation. MDA pathology reported that my cells were IDC with neuroendocrine features and after double checking the report with the pathologist and discussing my case with other BC doctors she recommended TAC. Which was exactly what my onc. here had recommended (until I worried her to death about the path report and she took it to a tumor meeting and changed the treatment plan).

So there is agreement between the two oncologists (both of whom are foreign born women btw): it's IDC with neuroendocrine features and treatment will be dose dense TAC. I never thought I'd be relieved to know I had an aggressive breast cancer but from what I've read it beats having a neuroendocrine, small cell tumor in the breast. I mean I'm still upset I have to go through this but at least I know what I have and that there are treatments for it. Of course if I had just followed my onc's original dx and treatment plan (which is what it turned out to be), I could have saved myself some stress but it is nice to know that there is consensus, since my bc is a bit unusual. Plus it was kind of cool being seen at MD Anderson.

Chemo starts Thursday (sigh!)

P.S. The MDA onc read my scans (PET,CT, MRI) and said they were clear.

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 6/25/2007 Breast Hormonal Therapy 10/31/2007 Dx 7/2/2013, IDC, 1cm, Stage IIA, Grade 3, 1/9 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/23/2013 AC + T (Taxol)
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Oct 21, 2013 02:57PM lekker wrote:

I'm glad that they were able to reach consensus and now you have your treatment plan. Congratulations on the clear scans!

Colorectal carcinoma in situ January 2000 (age 30), and now this... Dx 7/2012, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/6/2012 Lumpectomy: Right Surgery 10/3/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/12/2013 Reconstruction (left); Reconstruction (right) Surgery 4/11/2013 Prophylactic ovary removal
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Oct 21, 2013 04:10PM Bren-2007 wrote:

Hi 2timer,

Great news on the scans! I'm sure that is a huge weight off of you. I'm with you ... I would rather have an aggressive breast cancer than the small cell neuroendocrine-type tumor. I'm glad you have a treatment plan. I hope the chemo is kind to you .. and that it kills off all the cancer cells.

Let us know how things go on Thursday ... will keep you in my thoughts.

Bren

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