Just learned my IDC is really Neuroendocrine

Bump

there are a few very good closed FB groups that are focused on NETs... one person in particular who is extremely knowledgeable is Ronny Allan who has a website that has a ton of useful information including treatment guidelines, research, etc

bennybear, it’s a rare form of cancer so it’s not that easy to find information. Here is a website that offers a lot of information:

https://ronnyallan.net/

bennybear, a friend of mine has NETs and I’ve been helping her gather information... it takes some digging around to find information... very few oncologists are specialists in this rare form of cancer... Ronny Allan is wonderful and I’ve messaged him with questions and he’s very responsive and generous with his time. This type of cancer is treated differently so it’s vital that you locate a doctor who understands it.

Check out: Moose and Doc

https://breast-cancer.ca/neurcrine/

My MO doesn’t seemed concerned with the NET features treating it as regular bc.

bennybear, check out Ronny Allan on Facebook.. you can message him and he’ll respond quickly ... he has a wealth of knowledge about NETs... he is in the UK so there is a time difference

Mi wife's IDC showed "Neuroendocrine Features". The surgeon kind of freaked us out at first by telling us how rare this is. Neuroendocrine features is different than a Neuroendocrine Tumor (NET) and different from Neuroendocrine Cancer (NEC). A Neuroendocrine Tumor has to have more than 50% of the cells show neuroendocrine features. 49% is not NET and 51% is NET. Neuroendocrine features is less than 50%. All tumors can have some endocrine cells, the percentages may vary. Neuroendocrine Tumors or Cancer is rare in the breast and can be mets from somewhere else. Many Neuronedocrine patients have tumors that cannot be located. Neuroendocrine Breast Cancer (NEBC) (also not mets just NEBC) is treated like run-of-the-mill breast cancer. The Neuroendocrine community will tell you that you need a different chemo regimen but that is not supported by data. They will also tell you that you need a NETS Specialist...you don't. The chemo regimen that Neuroendocrine patients are on is fierce and can cause hearing loss and many other SE. A neuroendocrine tumor that is not mets should still be treated with breast cancer protocols. This would be surgery, chemo, radiation, and follow ups. There is no need to go hunting for any other NETS in the body unless there is a reason to believe that it was mets in the breast. IDC is IDC and typically not mets from NEC. Your diagnosis makes me think that you still have invasive mammary carcinoma...breast cancer. You just have greater than 50% of the cells showing neuroendocrine features. Breast cancer cells don't always know what they want to be. A good chunk of yours are deciding to be endocrine.

I believe the only difference in protocol is a different chemo and the gallium pet scan. NEC patients are usually fighting just to find out where their tumors are and they are often in non-surgical locations. YOU CANNOT GO OFF OF ANY DATA FOR NEC and then use that data for NEBC. Many people on this forum likely had some endocrine cells just not enough to be noted. How much do you want to worry about a subjective percentage of cells?

Take everything that I said with a grain of salt. I stayed awake for a week worrying over my wife's "neuroendocrine features" and used that time to read up on it. I have zero authority on it...unless a diesel mechanic counts as medical authority. My point is try not to stress out about it. Ask questions but try not to second guess the well established breast cancer protocols.

you may want to ask your oncologist about getting a gallium68 PET scan...