MY ILC Story

Betty---I have LCIS (lumpectomy, tamoxifen, closely monitored and living with high risk) diagnosed almost 4 years ago. My inspiration is my mom, a survivor of ILC of over twenty years now (lumpectomy, rads, tamox) without a recurrence. I just hope and pray that with close monitoring, anything to be found hopefully will be found in the earliest stages.

Kate, you are so right, there is no right or wrong answer. Sometimes the decision is out of our hands tho. I think the biggest indicator for me was the size of the tumor/size of my breast. I wasn't given an option since it was a 5.2 cm tumor in a B Cup boob. Best to you as you begin the rads! I have 6 more to do and then all done! Marsha

Nancy---while it is true if you have to have bc, the in-situ bc's (DCIS and LCIS) "are the best kind to get", they have their own set of issues and challenges. While not as serious as the invasive bc's, treatment still involves biopsies, surgeries (lumpectomies or mastectomies), medications (with the SEs that go along with them), sometimes radiation, close monitoring and of course, the worry and anxiety from all the endless waiting for test results! I agree with the other posters--it's definitely a very individual decision, very much depends on the level of risk you can live with comfortably. I have high risk from the combination of LCIS and family history. For now, I'm OK with very close monitoring and taking tamoxifen. But if I were ever to have any more suspicious findings show up, I would seriously reconsider the BPMs.

Hi ladies! I have what appears to be a small ILC in my right breast, but it has a component of in-situ and microcalcifications. At first glance, I thought my pathology looked pretty good, but hearing about how ILC can hide and recur and not be found on mammos and even on MRI sometmes--wow, I'm getting less and less optimistic. My Ki-67 is 5%, which I think is good, and I am ER+ and PR+, HER2 negative. I have had a dickens of a time finding a surgeon/hospital that is contracted with my new insurance, but finally found one in Bellevue, WA.

I had staging MRI at our local hospital the day before yesterday. What an ordeal that was! After I was about halfway through the test, the technician announced he was putting the contrast in. It really hurt and continued to hurt for a long time. I toughed it out, thinking that's just the way it is with MRI's. He finally stopped the test, said the vein was "blown." I don't know why it took him so long to figure it out. After he stopped the test, he asked me if it hurt when the dye went in and I said yes. (But had I known ahead of time about the possibility of a blown vein, I would have yelled sooner!) Then he put the needle in my left hand and it went in OK. But as time progressed, I got more and more anxious, and dizzy, thought I might even throw up, and my hands went numb so I had to press the panic button and he stopped the test. I guess it was a panic attack. It took a few minutes before I could even get up off the table due to dizziness. I was not seen by the radiologist and was given no written follow up instructions about extravasation of the dye. It just settled in my arm and now, two days later, it is back to normal. I just hope they got sufficient views done before I had to stop.

A mishap like this is why I just don't trust these llttle community hospitals. But I had to get the MRI done while I still had insurance and didn't have time to schedule it elsewhere.

I feel like a wimp for having to stop the test, but had the feeling that something bad was going to happen. I hope this is not a preview of things to come. I always thought I was tough as nails, but now, not so much.

I had ILC tumor and had a plastic surgeon tell me I was crazy not to do a bmx. I am lucky enough to have one of the top breast cancer oncologist in Seattle, he told me that was crazy. So I had a umx with DIEP 5 years ago and doing fine. I did my time on AI drugs and glad that is past me. Still recovering from my cancer treatment.