I was diagnosed with Invasive Lobular Carcinoma on May 14, 2021. Pathology results from my breast biopsy trickled in over 2 weeks, so even though I had a general diagnosis there were outstanding pieces of information that would determine my prognosis and treatment plan. Ultimately this is what I learned about my cancer:

• Invasive Lobular Carcinoma, Stage 2

• Progesterone and Estrogen Receptor Positive

• HER2 Negative

• Oncotype 22

My Cancer

Invasive Lobular Carcinoma (ILC) begins in the lobules that produce milk in the breast (the lobes empty into the ducts that carry the milk to the nipple). It’s the second most common breast cancer. Invasive means the cancer has grown beyond its initial location and has spread to surrounding tissue or elsewhere in the body -- in my case, to my lymph nodes. ILC doesn’t always form a lump, and didn’t in my case, which resulted in a bunch of false starts before finally convincing my OBGYN to let me get diagnostic imaging.

My Treatment Plan

I am being treated with dose-dense AC-T chemotherapy. I receive chemo every 2 weeks for 4 months. After chemo I will have a double mastectomy to remove the tumor in my breast and see how far the cancer has spread to my lymph nodes (through a sentinel node biopsy during surgery). I’ll have reconstructive surgery after that followed by 5 weeks of daily radiation treatments. Ten years of hormone therapy will be last, to ‘chemically’ shut down my ovaries, the primary producers of estrogen in the body.

Dose-Dense AC-T Chemotherapy

Chemotherapy is a systemic treatment for cancer. That means it targets the whole body, including microscopic cancer cells that may have spread beyond the local area of a tumor. Chemo given before surgery is called neoadjuvant therapy.

Invasive Lobular Carcinoma is very slow growing which is great news, but since chemo targets rapidly dividing or ‘fast growing’ cells, my cancer isn’t as responsive to it. The response rate of Invasive Lobular Carcinoma to chemo is between 40% - 60%. The expectation isn’t that chemo will eliminate my tumor, but rather that it will shrink it somewhat to make for a ‘lesser’ surgery and hopefully ‘sterilize’ the one biopsied and affected lymph node.

Dose-dense means there is less time between treatments. Research has shown that dose dense chemo can improve survival and lower the risk of breast cancer coming back. I am receiving 4 cycles of Doxorubicin (brand name: Adriamycin) and Cyclophosphamide together followed by 4 cycles of Paciltaxel (brand name: Taxol). This particular treatment is used to treat early-stage breast cancer (mine is stage 2), particularly in younger women.

Hormone Assay or Hormone Receptor Status

Breast cancer cells can have receptors for the hormones estrogen and progesterone. Hormone receptors are proteins that receive signals from hormones that tell cells to grow.

My cancer is Estrogen Receptor Positive (ER+) and Progesterone Receptor Positive (PR+). The hormone therapy that will follow chemo and surgery will block estrogen from being produced in my body and therefore, hopefully, help slow or stop cancer cells from growing.

HER2 Status

HER2 is a gene that, when activated, helps tumors grow more rapidly. My cancer is HER2 negative, which is common for lobular cancer.

Gene Expression Profiling or Oncotype

The Oncotype DX is a genomic test that may predict how likely it is that your cancer will return and whether you will benefit from chemotherapy. It uses tissue from a breast biopsy and can be done on early-stage breast cancers (stage 1 or 2) that are ER+ and HER2-. After the test you receive a recurrence score, which ranges between 0-100. Generally, a low score means the cancer has a lower chance of returning and you have a lower chance of benefiting from chemotherapy and a high score means the cancer has a higher chance of returning and you have a higher chance of benefiting from chemotherapy.

For women over 50 it’s fairly straightforward: a score of 0-25 is considered low and a score of 26-100 is considered high. For women under 50 there is more nuance.

My Oncotype score is 22. Because I am under 50 years old this puts me in a category of medium risk of recurrence. The benefits of chemotherapy are, for me, generally believed to be greater than the risk of side effects.

Genetic Testing

Only 5-10% of breast cancers are due to heredity, but you are two to three times more likely to develop breast cancer if a first degree relative (mother, sister, or daughter) has had the disease. Many--but not all--cases or hereditary breast cancer are linked to mutations in the BRCA genes (BRCA 1: BReast CAncer gene 1 and BRCA 2: BReast CAncer gene 2).

I chose to do genetic testing for a number of reasons. My maternal grandmother had breast cancer, I was under 45 when I was diagnosed, I wanted to know if there were genetic mutations I may have passed on to my children, and knowing if I had any genetic mutations would help my doctors understand if I was also at risk for developing any other cancers in my lifetime. All 93 of the genetic markers I had tested came back negative.