so many unknowns w ilc/lcis diagnosis

mellielu, I'm so sorry you find yourself here. It sounds like your surgeon is doing all the right tests, but it would be a good idea to go ahead and see an oncologist if you have not already done so, preferably one on the same team as your surgeon so that they are communicating with each other.

In my case, it was the MRI that pretty much made the decision for me between lumpectomy and mastectomy, as a large portion of my breast lit up on the MRI. After that my surgeon said that a lumpectomy was not really an option.

I opted for a bilateral mastectomy for peace of mind and symmetry. Before my surgery we did not have my genetic results back and we were going on the diagnosis of strictly ILC. My insurance company fought me on my decision to do a bilateral, saying that if I had LCIS they would approve the bilateral but not for ILC. We appealed that decision and I got the bilateral, which turned out to be the right decision after my genetic test results came back. I tell you all this so that you know to get all that information before you make any kind of decision, since those results can have a way of making your decisions for you.

Your surgeon is right in that ILC behaves differently that IDC, and I would educate myself on that aspect of it. This site and lots of ladies on this site have a wealth of information about it. Another good resource is https/lobularbreastcancer.org/. The difference between IDC and ILC will come into play when you're deciding on your treatment plan after surgery.

For the record, I also breast fed for at least six years of my life, and was 48 when diagnosed.

Please let us know how it goes. I wish you all the best!

Hi,

I was 51 when i was diagnosed. Almost 3 years ago. It was a 9mm spot. I had the option of lumpectomy or mastectomy. At that time they initially told me it was IDC on biopsy. I opted for a double mastectomy based on that my boobs were always behaving badly,,I had fibroadenomas, cysts and they were dense. I knew I did not want to go through more screening, alternating every 6 mths between MRI and Mammo. My anxiety is normally high. After surgery I found out it was ILC also had some LCIS and DCIS in that little tumor.

I was comfortable with my decision to do a double. I opted for direct to implants. Albeit they are small, (skin was too tight to go bigger then)but they are uniform! I'm on tamoxifen and according to last blood draw, still not menopausal even though i have not had a period in over a year.

Did oncotype text and that was a 9. Also did genetic testing after and all came back negative. My oncologist is not just a breast oncologist.

Best I can advise is,,do what feels right to you.

Are you sure it's .8mm and not .8 cm? Something that's .8 mm sound like they could do a needle aspiration to remove it.

Hi there, and welcome. You'll find these discussion boards to be such great help all through and beyond your dx and tx, whatever that is.

ILC has a higher tendency to recur later (compared to IDC), and has a higher tendency to be multi-focal (found in both breasts). I saw a general oncologist but that was only because I live in a smaller town and that was what was available. If I had lived closer to or in a metro area I would have tried to find one that specialized in ILC. It behaves a bit differently than the more common IDC and in a perfect world I wish I had a more specialized oncologist available, or at least a breast cancer oncologist.

If you don't want to get a BMX, then make sure that you are followed correctly. ILC tends to hide from regular scans like mammos because of the way ILC grows (mine hid from mammos for 5 years while I felt false protected with "all clear" yearly mammo reports). It seems like getting both an US and mammo is the better way for finding any problems-and even better, yearly breast MRIs are the gold standard for ILC check ups.

Dense breast tissue can also make it difficult to find a problem with just a mammo. I also had dense breasts, so between them and the ILC, my problem grew big enough and involved nodes-so down the chemo, rads, BMX and anti-hormonal path I went.

However, yours is tiny--and growing at the slowest possible rate-so you've already in great shape for continuing on your path for a long normal life when you get through this temporary health setback! If you don't have + nodes--it sounds like you don't-you might be able to get by with an anti-hormonal that you would take every day and skip chemo and maybe radiation too.

Claire in AZ

Mellielu, is your MRI still scheduled for tomorrow? I will be keeping you in my thoughts- hoping for good news!

I'm a little confused... 8cm or 8mm? thats a large area vs a very tiny less than 1cm area. 10mm = 1cm Mine was 9mm, small but surgery still needed.

mellielu, good luck tomorrow.

Melielu It's hard to get breast cancer diagnosis at first. We all have been there. I remember as I was waiting for surgery I was so nervous. I felt nausea and everything that I ate tasted bitter. I lost 10 pounds in one month before surgery.

I found keeping busy and talking with friends and family helped a lot. Also talking with psychologist at cancer treatment department also helped ease mynerves. I hope this helps. Hugs.