Rare Breast Cancer

[kssb]

In Feb 2007 (age 40) I was diagnosed with poorly differentiated invasive ductal carcinoma with neuroendocrine features. I had a SNB as well. The pathology was: tumor size 3.4 cm, node negative, Grade 3, Stage IIA, extensive angiovascular (lymphovascular) invasion, Ki-67 = 44%, P53 = 97%, ER/PR positive.  (Approximately 4-6 months prior to diagnosis I knew I had the lump.)  I received 6 cycles of TAC (taxotere, adriamycin, cytoxan) and then an aggressive 4-week radiation protocol. I received Tamoxifen for 10 months, then switched to Arimidex for 7 months and am now back on Tamoxifen (2 months).  I am 2 years out and have had my pathology slides reviewed now by 2 other facilities and my updated diagnosis is Large Cell Neuroendocrine Carcinoma of the Breast (NOS).

I would like to know how many diagnoses there are similar to mine (age, tumor stats). Are other diagnoses of large cell neuroendocrine carcinoma relevant to understanding prognosis? Is there a significance to primary site and prognosis (e.g., lung and pancreas prognosis is poor but breast seems to be a tad more favorable)?  Where can one find more information on this since there few (about 30) documented cases of this cancer in regards to breast?

I would like to hear from others with this or similar rare breast cancers.

[katarina777]

PS:sorry about asking your age; i just saw you said 40. I was 47.

[katarina777]

Did you have surgery as well, or just the chemo and radiation and hormonal treatment? I had IBC, which is relatively, although not that rare. but my pathology report sounded very much like yours except there was no mention of 'neuroendocrine features'. (except, estrogen positive may alone be such a feature) anyway, except for that part mine sounded just like yours and I was also diagnosed at around the same time as you, a couple of months later. i had the exact same chemo combination as well, and aggressive radiation. except, with mine there were many positive lymph nodes but this was not known until surgery. Also, my tumor was larger at 8x10 cm. but again, all the other stuff sounds mostly the same. Why did you switch back to the Tamoxifen? did the other drug not agree with you? And, how old are you? (if you are willing to share this?) Do you have any other endocrine illnesses? I am only asking because I am interested, and you don't have to respond)  is there like a specific, shorter name to sum up your condition? (like, in my case, IBC?) IBC is always diagnosed at stage 3 something. how does that work for your case? feel free to share as much or as little as you like, OK? best, KAT

[japdip]

I'm not sure you will hear from anyone here with your diagnosis. I personally have not seen a case of this rare type. You might post your questions on the "Expert Forum" and see if the Dr.s there could offer some additional information. I don't know if there would be any information there but you could try The National Institutes of Health also.    Good Luck