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

Has anyone had experience is asking for liquid biopsy or contract enhanced mammo. I was disappointed as at my one year out ILC (lumpectomy , 19 radiation, letrozole) appt with onco, she couldn't be bothered to answer either of these questions and this is at Dana Farber, Boston. In Boston I do know that Beth Israel offers CEM and while MRI the goldstandard especially for use dense breasters but CEM is a cheaper, often more approved by insurance option. I believe Signatera is good for liquid biopsy but not sure how to find out more! Any thoughts? xo

Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't want to have to go through with this again, if I can do everything in my power up front. I am not good with "wait and see" as it relates to this topic. I know it's not a guarantee to have mastectomy, but in my mind/emotionally, getting rid of the breast tissue in its largest portion, goes a long way toward decreasing my anxiety about recurrence...lurking masses that previously never showed up on any imaging, despite having 3D mammos every year for several years. The MRI report stated the tumor in the right breast, large clump of cysts in proximity ("probably benign") and left breast with several oval masses "probably benign, recommend MRI again in 6 months". The word "probably" leaves me no consolation. I suppose many might think I am looking at this as overkill, but the reasons for me are many, including having watched a very good friend die a miserable and painful death from peritoneal cancer and know that ILC has a propensity for the peritoneum, bones, along with GI tract if it decides to show up and live elsewhere. Some people are willing to roll the dice. I am not. Now, might the plastics guy talk me into a single? Maybe. I won't close my mind to it, but my inclination/spidey-senses are telling me to do the double.

My cancer was invasive lobular, HER2 positive, hormone negative. My oncologist told me that women are happy -with their decision once they make it. I'm not so sure. I opted for a single mastectomy and reconstruction. I re-thought this decision occasionally but once everything was done, I wondered If I really needed the reconstruction. I did not have the option of a lumpectomy though. I was 75 when I had to make my decision. That was 2 years ago. We all have decisions to make everyday. Think about where you are in your live. Once you make your decision, embrace it as the best one you could make.

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

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#:~:text=Choose%20a%20doctor%20who%20has,or%20accepts%20your%20health%20insurance.

Laurie

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.

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.

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.

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 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.