Invasive lobular breast cancer

Invasive lobular breast cancer is the second most common type of breast cancer. It is also known as invasive lobular carcinoma.

Around 15 in every 100 breast cancers (around 15%) are invasive lobular breast cancer. Breast cancer is very rare in men. It is also very unusual for a man to have an invasive lobular type of breast cancer.

What is invasive lobular breast cancer?

Invasive lobular breast cancer means that the cancer started in the cells that line the lobules and has spread into the surrounding breast tissue. The lobules are the glands that make milk when breastfeeding.

Remember that if your doctor has told you that you have lobular carcinoma in situ (LCIS), you don't have invasive lobular breast cancer. These are two different things and LCIS is not cancer.

Symptoms of invasive lobular breast cancer

Invasive lobular breast cancer doesn't always form a firm lump. You are more likely to have a thickened area of breast tissue.

Possible symptoms include:

• an area of thickening or swelling
• a change in the nipple, for example it might turn inwards (become inverted)
• a change in the skin, such as dimpling or thickening

While invasive lobular breast cancer can cause these particular symptoms, it’s worth being aware of the general symptoms of breast cancer.

Diagnosing invasive lobular breast cancer

Your GP may refer you to a breast clinic if you have any symptoms that could be due to invasive lobular breast cancer. You may also be referred to a breast clinic for tests if your screening mammogram shows an abnormal area. 

At the breast clinic the doctor or specialist nurse takes your medical history and examines your breasts. They also feel for any swollen (enlarged) lymph nodes under your arms and at the base of your neck.

You usually have a number of tests to check for breast cancer including:

• a mammogram
• an ultrasound (if you are under 35 you are more likely to have an ultrasound scan instead of a mammogram)
• a biopsy – a small sample of cells or tissue is taken from your breast and looked at under a microscope
• a breast MRI scan  

Treatment for invasive lobular breast

The treatment for invasive lobular breast cancer is the same as for the more common type of breast cancer. This is known as invasive breast cancer No Special Type (NST).

Your doctor considers many things before deciding the best treatment for you. Some of these factors include:

• the size of the cancer and whether it has spread (the stage)
• how abnormal the cells look under the microscope (the grade)
• whether the cells have receptors for particular cancer drugs
• your general health and level of fitness
• whether you have had the menopause   

This is why your treatment may be different from other people with breast cancer. Your doctor and breast cancer nurse will talk to you about your individual treatment plan.

The following is possible treatment for invasive lobular breast cancer:

Surgery

You usually have either breast conserving surgery or a mastectomy.

Breast conserving surgery removes the area of cancer and a surrounding area of healthy tissue. This operation is also called a wide local excision or lumpectomy.

Invasive lobular breast cancer is sometimes found in more than one area within the breast. In that case, it might not be possible to remove just the area of the cancer. Your doctor may then recommend removal of the whole breast (a mastectomy).

If you choose to, you can have a new breast made (breast reconstruction) at the same time as mastectomy or some time afterwards.

You may also have surgery to remove the lymph nodes in your armpit. This is called a sentinel lymph node biopsy. This means having about 3 to 5 lymph nodes removed. Sometimes surgeons have to remove more lymph nodes. Your surgeon will let you know whether you need this. 

Drug treatments before surgery

You might have chemotherapy or hormone therapy before surgery. This is known as neo adjuvant treatment. 

The aim of neo adjuvant treatment is to shrink the cancer before surgery. This means that some people may be able to have breast conserving surgery, who may have needed a mastectomy. 

Drug treatments after surgery

After the surgery, you might have one or more of the following treatments: 

• radiotherapy

• chemotherapy

• hormone therapy

• targeted cancer drug therapy

• drugs that help prevent or slow down bone thinning (osteoporosis) or bone damage

Follow up

After treatment you usually have regular check ups. At the check ups your doctor or a breast care nurse will examine you and ask about your general health. This is your chance to ask questions and to tell them if anything is worrying you.

How often you have check ups depends on your individual situation but they might go on for at least 5 years. This might include yearly mammograms. 

It’s important to remember that you can contact your doctor or nurse between appointments if you are concerned about a symptom or have questions. You don't have to wait for your next appointment. You can also speak to your GP.

In some hospitals you don't have regular appointments after treatment. But if you have new symptoms or are worried about anything you can phone your doctor or breast care nurse or make an appointment to see them. 

UK guidelines say that everyone who has had treatment for early breast cancer should have a copy of a written care plan. The care plan has information about tests you will have, and signs and symptoms to look out for. It will also include contact details for specialist staff, such as your breast care nurse.

Research and clinical trials

There are many breast cancer trials. So your doctor might ask if you would like to take part in a clinical trial. 

Breast cancer research is looking at:

• the causes and prevention of breast cancer
• screening and diagnosis
• new treatments
• ways to improve existing treatments
• ways to cope with cancer and its treatment

Go to Cancer Research UK’s clinical trials database if you are looking for a trial for breast cancer in the UK.

Coping with invasive lobular breast cancer

Coping with invasive lobular breast cancer can be difficult. There is help and support available to you and your family.