Lobular Breast Cancer: Let's share and support each other

Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've had biopsy showing ILC and then you also have clumps of cysts etc. I too have many cysts and density so I requested alternating 6months mammo and MRI. One year post lumpectomy and radiation for 1.8cm ILC right breast my 3D mammo is new baseline. I will have mammo in April - I hear ya on surveillance - very stressful but will be my norm.
Keep us posted. xoxo

I want to have mris and ultrasound of my breast from now on but I do not want the dye with mris. I will try to have my surgeon and oncologist order it without dye. The dye is not good for you.

I had same experience. Very large lump not detected by mammography. I saw it. Lymph nodes involved. Left breast. Had mastectomy. Am taking AI and having 5 wks of radiation. No metastasis shows on scans after surgery. I too will have only MRIs from here on.

I had the double mastectomy so I would not have radiation. Radiation on 2 breasts after chemotherapy would have been too much to handle. The doctors I went to earlier did not take the lump out. They watched it become cancer. After it was found in both breasts I went to Sloan Kettering in N. Y. city. They specialize in Cancer only.

My cancer did not showon mammogram either. Lobular Cancer doesn’t showon a mammogram I had to have a double mastectomy cause I had a different type of cancer in my other breast. I didn’t want it coming back. Went to Sloan Kettering in Manhattan. I am cancer free 21 years. Thank God!

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

I went to Sloan Kettering after my doctors watched a lump I has in my breast turn into cancer. If you have cancer go to Sloan.

Thanks. All good points to consider. I live in S. Florida and since Lobular Carcinoma is at the bottom of the research list, I am looking to consult someone who might be more on the edge of the research.

casbc | @casbc

All of us want to have the best and there are many excellent doctors. Luckily I live in Rochester, MN so my choice was easy.

If I had to pick someone at different locations, here are few things I would consider:

1. It is not just one doctor, you want to go to a clinic that provides a team that coordinates your care; oncologist, surgeon, radiologist, etc…
2. Location, though you may be willing to go anywhere for care, think about logistics. If just starting treatment it is many appoints and follow up. Want to go somewhere that is convenient.
3. Insurance, once select a few to follow up on, make sure they take your insurance.
4. Wait time for first appointment, some places are very busy.
5. It is OK to get 2 opinion.. If see one doctor and want to get 2nd opinion, it is OK.

American cancer society web site has article that might help:
https://www.cancer.org/cancer/managing-cancer/finding-care/where-to-find-cancer-care/choosing-a-cancer-doctor.html.
Laurie

How does one find the top Invasive Lobular Carcinoma Doctor in the USA?