Invasive lobular breast cancer

Invasive lobular breast cancer is a type of cancer that affects the cells of the lobules (milk-producing glands) of the breast.

“Invasive” means the cancer cells have spread outside the lobules into the surrounding breast tissue.

You may also hear it called invasive lobular carcinoma of the breast or ILC.

Around 15 in every 100 breast cancers are invasive lobular breast cancer. Women can develop invasive lobular breast cancer at any age but it’s more common as they get older.

Men can also get invasive lobular breast cancer, but this is very rare.

Sometimes invasive lobular breast cancer is found mixed with other types of breast cancer, such as ductal carcinoma in situ (DCIS) or invasive ductal breast cancer.

Symptoms of invasive lobular breast cancer include:

• A thickening of the breast tissue
• A change in the shape or size of the breast
• A change of skin texture such as puckering or dimpling
• A lump or swelling under the arm
• Changes to the nipple
• Discharge from the nipple
• A breast lump (although this is less common)

Invasive lobular breast cancer may not cause any obvious changes to the breast.

You may be diagnosed with invasive lobular breast cancer during routine breast screening before you have noticed any symptoms. However, lobular breast cancer can be more difficult to see on a mammogram than other types of breast cancer.

Invasive lobular breast cancer is diagnosed using a range of tests, which may include:

• A mammogram
• An ultrasound scan
• A core biopsy of the breast and sometimes lymph nodes
• A fine needle aspiration (FNA) of the breast and sometimes lymph nodes
• A breast MRI scan

Sometimes more than 1 area of invasive lobular cancer is found in the same breast. Invasive lobular breast cancer can also sometimes be found in both breasts (bilateral).

Surgery

The first treatment for invasive lobular breast cancer is usually surgery.

The type of surgery your surgeon recommends will depend on factors such as:

• Where the cancer is in the breast
• The size of the cancer in relation to the size of your breast
• Whether more than 1 area in the breast is affected

Types of surgery

You may have

• Breast-conserving surgery
• A mastectomy

You can talk through your options with your treatment team.

Breast-conserving surgery

If you’re having breast-conserving surgery, your specialist will let you know whether you need a breast MRI before the surgery. This is to look at the size of the cancer and whether there are any other areas of cancer within the breast.

However, a breast MRI does not always give an accurate estimate of the size of invasive lobular breast cancer. Because of this, some people who have breast-conserving surgery may need a second operation to make sure all the cancer, and a margin of normal breast tissue around it, has been removed. In some cases, a mastectomy will be recommended as the second operation.

Mastectomy

If you are going to have a mastectomy, you will usually be offered breast reconstruction. This can be done at the same time as your mastectomy (immediate reconstruction) or months or years later (delayed reconstruction).

If you have a mastectomy without breast reconstruction you may choose to wear a prosthesis (an artificial breast form that fits inside the bra).

Some people choose not to have reconstruction and not to wear a prosthesis after their mastectomy.

Surgery to the lymph nodes under the arm

Your treatment team will want to check if any cancer cells have spread to the lymph nodes under the arm.

Along with other information about your breast cancer, this helps them decide whether you'll benefit from any other treatment after surgery.

You can find out more about surgery to the lymph nodes on our surgery page.

Other treatments

After surgery you will usually need other treatments. These are called adjuvant (additional) treatments and can include:

These treatments aim to reduce the risk of breast cancer returning in the same breast or spreading somewhere else in the body.

Treatments given after surgery are called adjuvant treatments.

You may have some of these treatments before surgery. This is known as neo-adjuvant or primary therapy.

Follow-up

You'll continue to be monitored after your hospital-based treatments (such as surgery, chemotherapy or radiotherapy) finish. This is known as follow-up.

If you had breast-conserving surgery, follow-up will include regular mammograms to both breasts.

If you had a mastectomy, you will have a mammogram on your untreated breast.

If the invasive lobular breast cancer was not originally seen on a mammogram, you may be concerned that follow-up mammograms will not be effective in detecting changes in your breast. However, mammograms are still useful in picking up early changes.

It’s not currently standard practice to have a follow-up breast MRI scan for breast cancer. However, you can talk to your treatment team about your follow-up, as an MRI may sometimes be considered on a case-by-case basis.

Checking for changes

It’s important to be aware of any changes to your breast, chest or surrounding area, whether you had breast-conserving surgery or a mastectomy (with or without reconstruction).

It can be difficult to know how your breast or scar area should feel. The area around the scar may feel lumpy, numb or sensitive.

This means you will need to be breast aware and get to know how it looks and feels so you know what is normal for you. This will help you to feel more confident about noticing changes and reporting them early to your GP or breast care nurse.

Having breast cancer in 1 breast means the risk of developing cancer in the other breast (a new primary breast cancer) is slightly higher than in someone who has never had breast cancer. Therefore, it’s important to be aware of any new changes in your other breast and to report these as soon as possible.

If you have any concerns, speak with your GP or breast care nurse.

Secondary invasive lobular breast cancer

Secondary breast cancer occurs when the breast cancer cells spread from the primary (first) cancer in the breast to other parts of the body.

Secondary invasive lobular breast cancer can affect the:

• Digestive organs (stomach and intestine)
• Reproductive organs (uterus and ovaries)
• Lungs
• Liver
• Bones
• Brain
• Skin

It’s important to be aware of the signs and symptoms of secondary breast cancer.

Being diagnosed with breast cancer can be a difficult and frightening time.

Some people find it helpful to discuss their feelings and concerns with their breast care nurse or specialist. If you’d like to talk through your feelings and concerns in more depth, you may want to see a counsellor or psychologist. Your breast care nurse, specialist or GP can arrange this.

The charity Lobular Breast Cancer UK shares personal stories of people diagnosed with lobular breast cancer and campaigns for better information and research into lobular breast cancer.

You can also call our helpline on 0808 800 6000 and talk through your diagnosis, treatment and how you are feeling with one of our team.