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Nov 12, 2012 01:49PM
Hi Lifelover: Thanks for the post. You had great ideas. I will call some of the large US places. The reason it has become a problem is my oncologist was no "ignorant" about this type of bc that he had it confused with a different kind. When (having been in the medical profession in the past) I brought it to his attention he had to admit he did not know anything about it. The blind leading...... So.....the reason I want to find someone that knows something about it is to try to make treatment decisions. It might already be too late, but at least I would feel I had done all I could.
I think if I can just get the treatment and proper monitoring I could then get on with my life. With Medicare, if you can't show a "medical necessity for increased monitoring", etc., then you can't get it. So....with the high recurrance rate I think lymph node checks every 3 months would be mandatory, maybe for a longer period of time, don't know, but at least the first 3 to 5 years.
Oh, almost forgot, without my getting the diagnostic situation problem cleared up, they can't figure out the right type of chemo to use. That is not just now, but EVER.... With over 100 types of chemo they have to know more information, life the Oncotype DX. Unfortunately, due to the lab mistake, I could not get it done.
The hormone receptors (ER,PR) are effective for Invasive Ductal Carcinoma. Micropapillary is a sub-type. But, the micropapillary does not have receptors which means that hormone (aromatase inhibitors, etc.,) are NOT effective treatment for it. Chemo is the answer.
It can be scarey to think your doctor does not know anything or much about your type of bc. Anyway, thanks heaps. Mary
9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
11/11/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left