Feb 26, 2019 05:42PM Denise-G wrote:
Posted on: Feb 25, 2019 10:19PM
I am so confused for 8 years I thought I had IDC. Apparently it had neuro endocrine features and now the recurrence was originally diagnosed as IDC. But the updated pathology categorizes invasive mammary carcinoma with Neuroendocrine differentiation, classified as low grade Neuroendocrine carcinoma.
Trying hard to understand implications. My MO says it is treated the same
Posts 1 - 30 (32 total)
Feb 26, 2019 05:42PM Denise-G wrote:
Feb 26, 2019 06:46PM jessie123 wrote:
Congratulations Bennybear --- I just read about that type of cancer and it seems if you have cancer that's the one to have. Sure hope my pathology report comes back with the Neuroendocrine form,
Feb 26, 2019 08:45PM bennybear wrote:
not sure I understand the congratulations, or that it is the one to have from what I have read. What have you seen
Feb 27, 2019 01:45PM april1964 wrote:
bennybear, I have a friend who has Neuroendocrine Cancer... please try to find a Neuroendocrine onc specialist in your area and do research because I think treatment options might be different... good luck with everything!!
Apr 8, 2019 06:07AM bennybear wrote:
leee, I am doing ok but really don’t know much more. My surgeon was quite positive. Hoping to find out more.
How about you?
Apr 8, 2019 10:42AM - edited Apr 8, 2019 10:44AM by april1964
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
Apr 9, 2019 01:10AM bennybear wrote:
leee, hope you get some good info that helps. It feels a bit like a No mans land! I am having trouble understanding it for sure, not even much info here
Thanks April for that information, I will check it out.
Apr 9, 2019 06:45AM april1964 wrote:
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:
Apr 10, 2019 07:04AM bennybear wrote:
thanks April, lots of info! It is appreciated! Boy our diagnosis are similar, is yours Neuroendocrine too?
Apr 10, 2019 09:59AM april1964 wrote:
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.
Apr 10, 2019 06:15PM bennybear wrote:
thank you so mich! my oncologist said it is treated the same but I have been wondering. I am going to ask to see a NET specialist, fortunately there are a few near where I live. I really appreciate the info you have provided!
Apr 10, 2019 10:20PM april1964 wrote:
perhaps you might be able to find a specialist here:
May 20, 2019 06:15PM bennybear wrote:
Have checked these sites, and appreciate the info. I would so like to find someone who deals with the breast type of neuro endocrine. I have been told by my mo it is treated the same as regular BC. I asked about a referral and was told they only deal with the gut lung types.
May 21, 2019 07:02PM april1964 wrote:
there are different Neuroendocrine Cancer websites that you can check (I don’t have the links now but can look them up for you if you like) as well as Facebook groups that are private
Jun 27, 2019 11:54AM april1964 wrote:
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
Jun 27, 2019 01:53PM MattD77 wrote:
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.
Jun 27, 2019 05:21PM bennybear wrote:
wow Matt, thanks for the very thoughtful response. I am thinking it may be more common than we realize. I wish it would be easier to get clear info on it. I am still not sure if features is the same as differentiation.
What sites did you find helpful? I too want to do enough but not scare myself half to death!
Jul 1, 2019 09:42AM MattD77 wrote:
My wife had an appointment the day after I made my last comment. The surgeon gave her a new pathology report. The surgeon's comment was "well, it looks like the same".
The original pathology diagnosis was "IDC Grade 3 Stage 2b showing Neuroendocrine features". The new pathology report that we requested as a second opinion is "High Grade Neuroendocrine Carcinoma Metastisis Cannot Be Excluded"
My wife did not read the pathology she just went off of what the surgeon said. When she got home and showed me the pathology report it blew my mind. The pathology report was dated 6/21/2019. They handed it to her on 6/28/2019.
I am so freaking frustrated with these "medical professionals". When we first met with our oncologist I asked her about the neuroendocrine features and her response was "we are not going to go looking around your wife's body for other tumors". Her other response was "I can only go off of what the pathology says".
Yet we get a new pathology report that says Metastisis cannot be excluded and we are told that it is basically the same pathology.
Jul 1, 2019 12:14PM bennybear wrote:
yikes Matt! What a shock! I am so sorry to hear that, leaves you up in the air. Have you joined the Ronnie Allen site? They seem very helpful!
Jul 2, 2019 09:58AM MattD77 wrote:
bennybear: I have joined the group. Ronny Allen is a great source of information. The problem is that the group is based around NETs which is different than NEC. NEC is poorly differentiated and typically very aggressive. A patient can live for decades with NETs as it is seen as a chronic disease that requires ongoing treatment to manage. NEC is a very aggressive cancer that has some of the highest rates of METs and reoccurence. Not to mention that even among NEC patients, NECB the breast cancer version is extremely rare and even more rare as a primary.
We meet with my wife's oncologist tomorrow. I am going to push for a gallium68 PET scan and ask about adding carboplatin or cisplatin to the chemo.
Jul 2, 2019 11:52AM bennybear wrote:
Hope tomorrow goes well and you get the information and treatment your wife needs to deal with this. I think the lack of clarity in diagnosis and treatment of this makes it so much harder. All the best