I was diagnosed in oct 2010 with lobular cancer. Please read my journey and I would be available to help you in yours. It does get easier the farther away you get from diagnosis.

I was diagnosed in Jan. 2012. Invasive Stage 1 lobular cancer with LSIS and ADH. HEr-neg. Estrogen and progesteren -Positive. I had a double masectomy and flap reconstruction April 18th and am now home recuperating. The dr's didn't find cancer in my lymph nodes and am told the biopsy of the removed breast tissue was clear. I have an appt. with oncology next week. I believe I'll still be taking the 5 year chemoprevention pill. I was very lucky it was found so early. Reg. mammograms and the drs. have been following this spot since 2005, with a neg. biopsy in 2008. Even my latest biopsy in Dec. 2011 showed only ADH but then they did a excisional biopsy as an outpatient procedure. Removed a golf ball sz section and that's when they found the cancer.

I'm finding many women aren't getting all the facts about ILC-invasive lobular carcinoma. First of all you need to know the rest of your pathology diagnosis, it makes a difference in your treatment. Is it estrogen positive? Is it HER1 or HER2 negative?
These factors make a difference in the way your cancer is programmed to progress.

ILC is the second most common type of breast cancer, much less common than ductile. Also it behaves differently in how it can spread.

- it is much more likely to spread to the other breast, about 50% more likely. For this reason, I insisted on a double mastectomy. I wasn't going to sit around and wait for it to come back on the other side.

- ILC spreads differently, that is, to more places than ductile carcinoma. The lymph node biopsy can give you an idea whether that has already started to happen.

Ductile carcinoma, the most common type, spreads almost exclusively to bone, lung, brain, and chest wall. I think liver is included in that group, too.

ILC can and does spread to all those places, plus the colon, rectum, uterus, and abdominal wall. Kidneys are probably in this group also.

I'm not telling you this to scare you, but you need this information to make intelligent decisions about surgery, chemotherapy, radiation, and long term therapy.

Also, if you talk to someone whose experience was with ductile carcinoma of the breast, your experience will be somewhat different.

I was diagnosed 11/11/11 - Just finished Chemo and I start radiation tomorrow. I have posted details of my journey on my wall that may be of help.