Invasive lobular cancer and treatment choices

Boy I was never offered that. To late now I lost my breast. That’s frustrating. Did it work?

Yes, it blocked the estrogen that feeds on ILC shrinking the tumors enough to get the needed margins. The MRI showed my breast was completely full of tumors. I did a double mastectomy then 4 months of chemo followed by 6 weeks of radiation. They removed 19 lymph nodes 15 of which were cancerous so I am taking Exemestane and Verzenio trying to stave off further metastasis for the next 4 years. Will take the Verzenio for 2 years and the Exemestane for the rest of my life.

Thinking of you and so agree with you regarding imaging. My ILC with MRI was shown to be much larger and helped with surgery. I still opted for lumpectomy (58yrs old). After surgery margins weren't great so I did boost radiation followed by Letrozole which has now pushed me into osteoporosis so I'm going to start Fosamax. My oncologist at Dana Farber fought me on MRI surveillance (I asked for after annual mammo - 6 months alternating) - I told her I'd rather deal with reoccurrence when tumor burden is low. They simply cite academic articles reporting mortality not much different with early detection. What? How'bout what is better for the patient. All we have is early detection!

After my diagnosis, both my grown daughters called their primary doctor and were put into a high risk breast cancer clinic (one lives near me and the other is in Seattle). Both those clinics have a protocol of alternating mammograms and MRI’s every 6 months.

I would not want to deal with another tumor, should you get one, but would gladly do their protocol as an early detector.

Following in your footsteps. Ductal & ILC going on Wednesday for DMX.

Good luck! ILC and IDC. I got the second one wrong. Here is another truth from my experience; I had remarkably little pain. And I hope all goes well for you . Peace and joy to you!

I was diagnosed with estrogen positive invasive lobular cancer in 1998 and was also given the same choice by oncologist and surgeon. I was undecided so I got a second opinion from another reputable surgeon, and she actually found a very tiny lump farther away from the original lump, (neither of these lumps showed up on my mammogram). I decided on a mastectomy with confidence, followed by tamoxifen. I did have a tiny local reoccurrence in my armpit in 2000. They removed it and radiated my left chest wall. Then I took Arimidex. Seventeen years later, a small lump showed up in my right breast and I had a mastectomy, no chemo or radiation. Since then, I have had a few local reoccurrences that have been removed followed by a chemo pill which works to remove them completely. I have only one lung, so they will not radiate on my right side. I don't know if any of this helps. Best wishes on your decision.

Thank you. Were you on the blockers when you had your reoccurrences? How did you know you had cancer after a mastectomy? Invasive lobular is a sneaky cancer. It seems to like to reoccur.

What is the name of the chemo pill you took?

I was also diagnosed with ILC 6 6 years ago on my left breast and opted to do a mastectomy with reconstruction. I tried tamoxifen 3 different times but I felt very dark and gloomy with terrible joint and muscle pain. After talking with my doctor who told me my risk would go from 7% to 4% by taking tamoxifen, I decided to not take it anymore. However, in January 2024 I had my annual mammogram which detected a small spot on my right side. After the biopsy it was confirmed that I once again have ILC in my right breast - stage 1 and the MRI does not show that it has spread and the type of ILC is similar but not the same as the first ILC I had so it did not spread from my left breast. Chemo and radiation are unlikely but we will know for sure once the surgery is done. I am going to remove my implant on the left breast, have a mastectomy on the right breast (I just can’t have anymore scares with the mammograms) and have a DIEP flap to reconstruct both sides. I wanted this surgery the first go around but the plastic surgeon said I didn’t have enough fat (which I thought I had more than enough) but thanks to age and menopause I now have enough to reconstruct both sides. I didn’t realize all these years I was feeding and growing my new belly boobies. I will once again try the hormone medication and hopefully because I’m in menopause the different drugs will not affect me as much. Good luck to you in your journey. I’m sorry you are having to go through this!!!!