ILC (Invasive lobular Carcinoma) New Diagnosis

I was diagnosed with ILC in May 2011. Hard to believe that now I guess I'm a veteran. I was also told first to go to a breast surgeon as the most important thing was to 'localize' the cancer and remove it. I thought I was going all out of order too - and went ahead and saw my oncologist who then told me I really needed to go to a breast surgeon. 

I had multi-focal ILC (which is common with ILC) and had 3 small tumors in one breast (all only found on MRI). I was told by 3 doctors that a lumpectomy was not an option as it would be so disfiguring with three tumors that a mastectomy was going to be required. It was then my choice to do both breasts or just the one with cancer. I was told by my oncologist that I needed to have the mastectomy within 6 weeks of diagnosis.

My husband did research (I did none - couldn't bear it) and we decided that I would have a double mastectomy (or BMX). ILC is sneaky. Mine was slow growing but hard to find. Even after the MRI told us exactly where my tumors were neither of us could actually feel them and they did not show on the mammogram I had the same day as the MRI. I was concerned about having to get MRI's for the rest of my life on the 'good' breast and having to fight insurance for them every time (as I had to this April - thank God I did though). For me that was the right choice. I have never doubted it or regretted it. In June of this year I had BMX with immediate DIEP reconstruction in New Orleans (NOLA). Another 'find' by my husband. We live in Colorado and there are doctors that do DIEP here but if you are going to do DIEP in the US NOLA is the place to do it. So I went there and again haven't regretted my decision.

I was not 'staged' with my cancer until after my BMX as that is when they tested my nodes and nodes are important for staging. It drove me crazy that they would not give me a stage so I understand your frustration. But to the dr's it really didn't seem important. But to me it was critical!! My nodes turned out to be clear. Because of this they did an Oncotype test to determine how aggressive my cancer was (takes 2 weeks after surgery for results - another wait). I was lucky and only had a Oncotype score of 13 - which means my cancer is not very fast growing. This meant no chemo for me. I am on Tamoxifen now and will be for 5 years.

So hang in there - you will get your results soon and hopefully a good oncologist will explain them all to you. If you have any questions that I can answer - please ask. I don't mind at all. These boards have been very helpful to me so if I can be helpfult to someone else I would be happy to. 

Hi-  Just want to say I am wishing you ladies the best.  I was diagnosed March of 2010 and literally shook with fear for two or three weeks.  The early stages are the worst.  Try to be kind to yourself.  I went to a couple of breast surgeons, a couple of oncologists and a couple of plastic surgeons before making my final decision.  Once you choose a surgeon you will be looking at a whole set of tests which will help determine where your cancer is.  I was not fully staged, graded, or tested until after surgery.  Then I went to the oncologist to set up my chemo.  Once chemo was done I moved on to radiation.  After that it's Tamoxifen.  

The what if's don't go away.  You are entering a new scary world.  Please, please remember there are many of us who have gone before you and are still alive and even enjoying life.  

 Those of you just diagnosed are at the worst part. All the information gathering, testing, decision making is mentally exhausting. I thought it odd that you dont see an oncologist right away also. I think that only occurs if they believe your tumor to be large and you need chemo prior to surgery to shrink things. Otherwise, its all about the surgeon getting it out. All of my ultasounds, mri, etc showed my clinical stage to be stage 1. However after my surgery, they found the sentinel node had involvement and I am officially a stage IIa. I found that very hard to take at the time. Still trying to figure out whether I will need radiation or not. I seem to be in a grey area. But once you have all of your cancer's features, and a plan gets put in place it does get easier.  I also found telling family, friends, coworkers, to be really hard. Everyone was very kind and meant well, but most dont know what they are talking about. Also, they will tell you about their cancer scare. The time they had to have a breast biopsy, how traumatic it was for them but in the end it turned out to be negative. I am happy for them but Its like... really. Your sharing that with me now?