Neuroendocrine Carcinoma

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

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.