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Jun 1, 2007 12:24PM
Oh, Kitty123, I'm so sorry you are going through this. It must be horrible to go through. You are not alone.
I, too, have LCIS (with 'features of ALH'). I have a weak family breast cancer history.
I had a core biopsy 12-05 that showed LCIS, and an excision 1-06 to 'verify the diagnosis'. I had genetic counseling 3-06, and opted not to have genetic testing as they said I have a low probability of having mutation. I have had an ultrasound 4-06, and digital mammos and ultrasounds every six months since 1-06, went on tamoxifen 7-06, and had another 2 biopsies 2-07, both read as benign (at worst ductal hyperplasia without atypia.)
I am so sorry to hear that your insurance will not cover genetic testing.
I found one of the two biopsies this spring almost unbearable because I was informed they had potentially 'mislabeled' an area under my nipple that they were following for ultrasound as scar tissue. This plainly visible abnomormality just under my nipple could have been ILC that was there for 9 months and went through 3 sets of radiologists and sonographers. It was read as benign (one was ductal hyperplasia without atypia.)
I have major problems with my breast surgeon (we have very different styles of communication), and she has said she is not interested in doing further surgery on me, even before my 2 biopsies last spring. Well, I should have read the red flags because her initial words at my first visit (after my core biopsy showing LCIS, but before the excision), her initial greeting to me was "If you want prophylactic bilateral mastectomies then I will fall over in my chair." I think it is absolutely presumptuous to say that to a patient when you have no idea what this means to the patient.
I find it so hard to not be anxious about breast cancer. I am a basically quite anxious person to begin with, and this has not helped.
I decided to get a 2nd opinion at a major university in July. I am getting many of my slides reread there also. My onc said to ask them how often I should be monitored with MRI - should it be 1x or should it be on a routine basis, for how long?
If Major University does not think I am off the wall for desiring PBMs, then I will be searching that.
All of this anxiety takes a toll. I so wish there was a magic way some of the stress could be eliminated in your life. It sounds like this is really affecting every moment in your life. I am so sorry.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov
12/8/2005, LCIS, ER+/PR-
1/24/2006 Lumpectomy: Left
7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)