Neoendocrine Subtype

Onelife2012

Hello everyone,

I am hoping to find some information or to connect with someone with the same diagnosis.

I was diagnosed with Invasive Breast Cancer with Neoendocrine Subtype. Stage 2, Grade 2 ER+PR+HER-

Total Mastectomy 2 weeks ago. Oncology appointment in 2 weeks.

Any advice would help. I have read conflicting reports. All I know is this type of tumour is very rare so I am praying I can find a specialist that can give me the best treatment to beat this beast.

Thanks in advance. 

msmouse

I am in the same boat as you except I did not know about being a "pink zebra" until I was diagnosed with liver mets and they redid all my original pathology. I also have IDC & DCIS. I am grade III, poorly differentiated. ER+ PR- HER/HER2- . I had Neoadjuvent chemo with TAC and a lumpectomy followed by 33 radiation treatments. 2 months after rads I had what I thought was a gall bladder attack & they found liver mets. Did 4 cycles to etopiside and carboplatin but had progression; so far only in my liver. Am now on a stage I clinical trial with cisplatin, gemzar and a immune study drug. My pain is less so I think its working. I show no evidence of cancer returning to the affected breast. CT & PET/CT only show progression to the liver. My oncologists tell me neuroendocrine cancer is more related to lung or GI cancers and it is VERY RARE in the breast and even more rare for it to be the primary in the breast & spread elsewhere. Let me know how you are doing.

Debbie

Onelife2012

Hi Debbie,

Thanks for your reply. Did you have a Neoendocrine tumour in your breast too.....and now in your liver?

My surgeon told me it is very rare , I don't think he had ever seen one before. I have had ultrasounds to my stomach, liver and GI area. I have my lymph node U/S next.

I just wish I could be calm but right now I am going through the angry phase.......i hate this disease. I am a strong person having been through this once before 11 years ago. This time I am finding it much harder to cope with. 

Caryl 

msmouse

It was in my original pathology but they did not test for it; I had IDC & DCIS. After my liver biopsy (the 1st one) they sent ALL my slides and tissue to UCLA to be redone; plus a 2nd liver biopsy that confirmed the neuroendocrine type.

It's ok to be angry; I had just gotten the all clear from my breast MO to take the AI and see her in 3 months. 2 weeks later I was back after the PET/CT showed a 7cm mass in the left lobe of my liver. The scans in Nov. after chemo didn't show anything anywhere; not even my breast. My lumpectomy pathology only showed .1mm of IDC and clear margins. To say everyone was surprised is an understatement. I have my 1st mammo after rads next week.  I hope its clear; but again, back on chemo so I am not expecting any surprises. The good news is the new treatment seems to be doing its job. I feel REALLY well. No pain meds in over 10 days. 10 day labs are very good.

Once they have a treatment plan in place for you it will get easier. It's the waiting that makes it worse. Are you taking anything for anxiety? If not, ask for it. Xanax was my friend for the 6 weeks from ER visit to treatment. If you are not sleeping at night it makes the days harder to bear. What area of the US are you in? Feel free to PM me any time and know I have your back.