How Common is Invasive Lobular Carcinoma?

How Common is Invasive Lobular Carcinoma?

Medically reviewed by Dr. Doug Blayney on May 23, 2024


Invasive Lobular Carcinoma (ILC) is a type of breast cancer that starts in the lobules, which are the parts of the breast where milk is made. Unlike most other types of breast cancer that cling to one another and form a lump, ILC cells spread between the tissues in what can look like a straight  line, making them harder to detect on a mammogram. This form of cancer is actually the second most common type of breast cancer in the United States. It affects about 10% to 15% of people diagnosed with invasive breast cancer. Because it can be difficult to find early, it's important to know the signs and get regular check-ups. Understanding ILC helps patients and caregivers better navigate the challenges of this disease.

What is Invasive Lobular Carcinoma (ILC)?

Invasive Lobular Carcinoma (ILC) starts in the lobules, which are the parts of the breast where milk is produced. Unlike other types of breast cancer, ILC cells tend to spread out in a line and are harder to detect on mammograms. This makes ILC different from the more common Invasive Ductal Carcinoma (IDC), which starts in the milk ducts and usually forms a lump that can be felt.

Symptoms and Diagnosis of ILC

One of the tricky things about ILC is that its symptoms can be different from other breast cancers. ILC often doesn't form a noticeable lump, which is what many people look for when they think of breast cancer. Instead, you might notice a thickening or fullness in one part of your breast, changes in the texture or appearance of your breast skin, or a newly inverted nipple.

Diagnosing ILC usually starts with a mammogram, but because ILC can be sneaky, additional imaging tests like ultrasounds or MRIs might be needed. If something suspicious is found, the next step is often a biopsy, where a small sample of tissue is taken and examined under a microscope. Staging procedures, which might include CT scans or bone scans, help doctors see if the cancer has spread and decide the best treatment.  

Two other notable features of ILC are that 1. ILC is almost always estrogen receptor or “hormone receptor” positive, and 2.  ILC deposits or metastases may not show up on a PET scan. PET scans are often used to “stage” or try and detect cancer deposits outside the breast, and for this reason, many oncologists use CT and bone scans instead of a PET scan to stage ILC. 

Treatment Options for ILC

There are several ways to treat ILC, and the best approach depends on the specifics of each case. Here are some of the main treatments:

Surgery: This could be a lumpectomy (removing the tumor and some surrounding tissue) or a mastectomy (removing one or both breasts). Sometimes, lymph nodes are also removed to check if the cancer has spread.

Hormone Therapy: Since many ILCs are hormone receptor-positive, treatments that block hormones like estrogen can be very effective.  Anti estrogen treatments may also be made more effective with addition of CDK4/6 inhibitor treatments such as Ibrance ® (palbociclib), Verzinio ® (abemaciclib) or  Kisquali ® (ribociclib).

Chemotherapy: This uses drugs to kill cancer cells and is often used if the cancer has spread or if there is a high risk of it coming back.  Chemotherapy may not be as effective in early (after surgery) treatment of ILC as it is with other forms of invasive breast cancer.

Radiation Therapy: This uses high-energy rays to target and kill cancer cells, usually after surgery to get rid of any remaining cancer cells.

Doctors create personalized treatment plans based on factors like the cancer's stage, hormone receptor status, and the patient’s overall health. Research and clinical trials are constantly improving these treatments, offering hope for better outcomes in the future.

Prognosis and Follow-Up Care

The prognosis for ILC can vary. Many factors influence the outlook, including the cancer's stage at diagnosis, how well it responds to treatment, and the patient's overall health. Regular follow-up appointments are crucial to monitor for any signs of recurrence and manage any long-term side effects of treatment.

Living with ILC can bring many concerns, from fear of recurrence to managing the side effects of treatment. It's important to talk openly with your healthcare team about these issues. They can provide support and resources to help you maintain a good quality of life.

Lifestyle Strategies and Supportive Care

Managing life with ILC involves more than just medical treatment. Here are some tips that have helped our community:

Nutrition: Eating a balanced diet can help you feel better and support your recovery. Focus on fruits, vegetables, whole grains, and lean proteins. This is a bit of a “duh” area, but calling it out to put it back on your radar.

Mental Wellbeing: Cancer can take a toll on your mental health. Talking to a counselor or joining a support group can be incredibly helpful. Our community has found that all of the above is often the right way to go!

Physical Activity: Staying active, even with light exercises like walking, can improve your energy levels and mood.

Support groups and counseling can offer emotional support, while resources for caregivers can help them take care of themselves as they care for you. Remember, it's important to take a holistic approach to wellness and self-care, which can be hard to remember when you’re dealing with cancer.

Resources and Next Steps

We are here to walk with you as you go through your own cancer experience. Please don’t hesitate to reach out with any questions. Be sure to subscribe to our newsletter and check out our free resources like our Chemotherapy Checklist for Caregivers, Financial Checklist for Cancer Treatment and more. We also put out a bi-weekly podcast called the Patient from Hell to educate, empower and hopefully inspire you as you go through this crappy experience. You can listen on Spotify, Apple Podcasts, YouTube or anywhere you listen to podcasts. Dealing with cancer as a patient or caregiver can feel really lonely. Just know that you are not alone in this experience.


Invasive Lobular Carcinoma is a challenging experience (just us stating the obvious again!), but understanding it better can make a big difference. Awareness, education, and support are key to navigating life with ILC. Remember, you are not alone in your experience!

FAQs from our community

How long can you live with invasive lobular carcinoma?

With early detection and proper treatment, many people can live a long time with invasive lobular carcinoma. Survival rates depend on the stage and other factors, but many patients live for many years after diagnosis.

How aggressive is invasive lobular carcinoma?

Invasive lobular carcinoma tends to grow slowly and spread less aggressively compared to some other types of breast cancer. However, it can be harder to detect early, which can sometimes make it more challenging to treat.

Should I have a mastectomy for invasive lobular carcinoma?

The decision to have a mastectomy depends on several factors, including the size and location of the tumor and your personal preferences. Your doctor can help you decide the best treatment plan for your situation.

What is considered early stage invasive lobular carcinoma?

Early stage invasive lobular carcinoma is typically classified as Stage I or Stage II. This means the cancer is confined to the breast or has only spread to nearby lymph nodes.

What is the best treatment for lobular carcinoma?

The best treatment for lobular carcinoma often includes surgery, such as a lumpectomy or mastectomy, combined with radiation therapy. Additional treatments like hormone therapy or chemotherapy may be recommended based on individual factors.

Is chemo recommended for invasive lobular carcinoma?

Chemotherapy may be recommended for invasive lobular carcinoma, especially if the cancer is more advanced or has spread. Your doctor will consider various factors before suggesting chemotherapy as part of your treatment.

Can a lobular mass be benign?

Yes, a lobular mass in the breast can be benign, meaning it is not cancerous. It's important to have any breast mass evaluated by a doctor to determine if it is benign or malignant.

What is invasive lobular carcinoma grade 2?

Invasive lobular carcinoma grade 2 is a moderate grade, meaning the cancer cells look somewhat different from normal cells and are growing at a moderate rate. It is considered an intermediate level of aggressiveness.

How serious is invasive lobular carcinoma?

Invasive lobular carcinoma is a serious condition, but its prognosis can be good with early detection and treatment. The seriousness depends on factors like the stage at diagnosis and how well the cancer responds to treatment.

What is invasive lobular carcinoma grade 1?

Invasive lobular carcinoma grade 1 is considered low grade, meaning the cancer cells look more like normal cells and tend to grow slowly. This is usually associated with a better prognosis compared to higher grades. (Grade should not be confused with stage. Stage refers to if and where the cancer has spread outside of the breast.)

What are lobular breast cancer symptoms?

Symptoms of lobular breast cancer can include a thickening or hardening in the breast, changes in the texture or appearance of the breast skin, and a newly inverted nipple. It can, but may not not form a noticeable lump like other breast cancers.

What is invasive lobular carcinoma grade 3?

Invasive lobular carcinoma grade 3 is high grade, meaning the cancer cells look very different from normal cells and grow quickly. This type is generally more aggressive and may require more intensive treatment.

Invasive lobular carcinoma grade 2 prognosis?

The prognosis for invasive lobular carcinoma grade 2 varies, but with appropriate treatment, many patients have a good outcome. Factors such as the cancer's stage and the patient's overall health also influence the prognosis.

Where does lobular breast cancer spread first?

Lobular breast cancer often spreads first to the nearby lymph nodes. If it continues to spread, it can affect other parts of the body such as the bones, liver, lungs or the lining of the abdominal cavity (the peritoneum) or the lining of the chest (the pleura)

What is the staging of lobular carcinoma?

The staging of lobular carcinoma ranges from Stage I (localized) to Stage IV (metastatic). The stage is determined by the size of the tumor and whether it has spread to lymph nodes or other parts of the body.

What is early invasive carcinoma?

Early invasive carcinoma refers to cancer that has begun to spread beyond the original tissue but is still in the early stages of development. This generally includes cancers classified as Stage I or Stage II.

What stage is a 7 cm breast tumor?

A 7 cm breast tumor is typically classified as Stage III, meaning it is a locally advanced breast cancer. This stage often involves larger tumors and may have spread to nearby lymph nodes but not to distant parts of the body.

Is chemo recommended for invasive lobular carcinoma?

Chemotherapy is sometimes recommended for invasive lobular carcinoma, especially if the cancer is at a higher stage or has certain characteristics. The decision is based on individual factors and the overall treatment plan.

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