Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

Any info or advise would be appreciated!

Hi! Sending hugs-I was diagnosed a year ago and felt very lucky to have had a radiologist pick it up in a screening mammo. After a diagnostic mammo and biopsy via ultrasound I had an MRI which is recommended with lobular and especially if you have breast dense breast which I still have at 57yrs. The surgeon will walk you thru options and I decided on a lumpectomy! Please keep us posted and don’t get too ahead of yourself until you have a plan. Once your cancer is studied in pathology you will learn so much more which will dictate your treatment. Lobular is they say tricky as the cancer cells form more if a line vs cluster/tumor in the more common ductal. Perhaps you have a cancer center near you? Hang in! Xo

I was diagnosed with invasive lobular ancer in 2021. Waiting for all the testing to be done is torturous! I was at a large medical center in Colorado where the testing was done quickly (but felt like forever). Following the mammogram and ultrasound, I also had a Body MRI and Bone MRI. I thought those were standard test and they might be for invasive lobular as it is a tricky cancer to dx.
So much depends of the "driving force" of the cancer: ER, PR and/or HER2 + or-. That will determine your treatment.
I wish you well and stay connected.

I looked mine up again and I wrote dcis but it was the invasive lobular. My tumor was a 5cm, and I was not large breasted, so no lumpectomy for me. Not likely after my breast surgeon sent me for a mammogram and an MRI.
I tried not to focus and kept my mind on day-to-day living. Like maggieb892 I too had a body scan and a bone scan and a CT scan. No other cancer noted. But genetics gave me Brca2. Then, my surgery changed my HER2- to Her2+.
The tumor itself had Her2+. I have been at the City of Hope in Duarte. Research hospital. lissao....not sure where you are at, but i hope at a place like mine that will thoroughly look at your body systems before they make a diagnosis. A plan. My friend is being treated at MD Anderson. Today she told me Herceptin is helping keep her stable.
I love what the others have posted. Keep a journal. Post on here, so you know you are not alone.

I also have just been diagnosed with invasive lobular carcinoma, stage 1,
Tomorrow I go in for MRI. Can Someone Pls tell me how this works?? I know nothing. I have questions

In my case I had an MRI to see if there was any spread, then I went for lumpectomy. I had no lymph node cancer although I did have some removed in surgery. I was also stage 1 - cancer cells had moved out of the lobe and into surrounding tissue. I had a lumpectomy and radiation and now a drug I’ll take for 5 years. Stage 1 is good and I was told it was very curable and turns out it was!

lobular carcinoma can be difficult to detect. They want to do the MRI to get a better look at it before doing surgery. For example, MRI's are good to tell if it is unifocal or multi-focal - that is, is there only one cancer or more. Probably it is only one, so don't worry. They just want to double-check. MRI's don't hurt - just the IV for the dye they use, and that is minimal - like getting blood drawn.

Talk to other people you know who have had breast cancer, if possible. One out of 8 women will be diagnosed in their lifetime with BC, so it is likely you know someone. This forum is also good.

Are you going to one cancer center or medical center for all your treatment? You will see a surgeon, an oncologist, possibly a radiation oncologist. If so, ask if they have a nurse navigator to help you. Also ask if they have counseling (social worker, therapist, etc.) to help you sort our your feelings. I wish I had done this when I was first diagnosed.
If you can choose all of your doctors, that is nice, but you may be on your own for someone to coordinate your care. Ask your doctors if they can give you any assistance in this. You might also check your insurance to see if they offer care coordination. Some insurances do. Don't hesitate to ask for a second opinion if you feel that you need one. Don't be embarrassed to ask. It is your right.
I pray for peace of mind and calmness for you.

What does the Pr +- Er, HERS stuff stand for ? Thx

They refer to the receptors on the cancer cells. ER= estrogen, PR= progesterin and HER 2=a protein that is on the cancer cells. Knowing the positive receptors helps the oncologists know the course of treatment. That is a good question to ask your daughters oncologist

Thank you