Just diagnosed with invasive lobular carcinoma (ILC): Any advice?
I’ve just found out i have invasive lobular carcinoma. Stage 2. I have an appointment with a surgeon today and an oncologist next week. Not sure how all this works makes me nervous. Any help would be appreciated
Interested in more discussions like this? Go to the Breast Cancer Support Group.
Wishing you a good appt today.
My invasive breast cancer was 1 year ago. I did have a mastectomy but no chemo or radiation. Have just finished a lot of scans and tests and all is still clear 1 year later.
Staying positive is hard but we all do our best!
I was diagnosed in February 2022 with what was initially thought to be a 2.5 cm ILC. Had multiple tests that showed it to be somewhat larger. I opted for single mastectomy after consulting surgeon and radiation oncologist. Unfortunately, the tumor was a whopping 7.5 cm after pathology and, as I am small breasted, the surgeon was not able to get clear margins. Also had 3 of 4 lymph nodes involved. Following 33 sessions of radiation, I developed pneumonitis and am now just coming off of the steroids. I have learned that taking care of oneself should be a priority for anyone dealing with cancer. The mind body connection is real for me and at the tender age of 83 I have embraced it. This site has been a revelation and the women are kind and caring.
Hello everybody, I am 64, new to this group. Diagnosed with invasive lobular carcinoma 6mm 3 weeks ago. Next week will be my first appointment with oncologist. Could you, please, advise me what to ask?
How were your appointments, francinemoran?
@francinemoran, I hope you saw the helpful, supportive posts from @momc and @gbnana who also have invasive lobular cancer and are walking this path just slightly ahead of you. Like you, @nadejda was only just diagnosed and wanting to walk alongside you as you both take this journey at similar times.
Francine, how did your appointment go? Did you discuss treatment options?
Hi there all
I am new to this group, a husband with my wife (just turned 50) diagnosed with ILC, and similar to a recent post, we have our first appointment tomorrow to get all the final detailed results after the MRI, Mammograms, and scan. We have been advised its in the lymph nodes as well but of course more details tomorrow.
Again any pointers on what to ask whilst we are there.. also how open and honest are they actually about the diagnosis, the outlook and the reality of it all.. did people find in general they are totally honest and open about it.. ? We have 2 youngish children.. so of course like everyone i guess we need to know all…
Wishing yiu the best..I am just behind you and ithers..hoping those ahead are faring well and can share insight and awareness they have uncovered on their journey..wishes for health and blessings
Is this ER or PR or HER 2?
Thank you Queue555 for the reply. Today I did find I have ER+, HER2- ILC. Did somebody have the experience with the hormone therapy? Wish you all the best!
They tried tamoxifen to shrink mine for 5 mths. It did not work. I had double mastectomy and full reconstruction then chemo and radiation. After that back on tamoxifen for a few years, now just switched to an aromatase inhibitor, see how that goes. You're initial pathology staging is not the true one, that comes when they remove it and test it. So don't panic at the size they say. Biology plays a part too.
Did you have a side effect from Tamoxifen and aromatase inhibitors? Looks like I will have before and after the surgery one of them