Newly Diagnosed

If you’ve just been diagnosed with Lobular Breast Cancer, you might be feeling a range of emotions from anger, fear, worry or stress. There is no one way to feel and all of your emotions and thoughts are valid.

You will have been given a lot of information at a time when you may be reeling in shock. There may be a lot of questions whirring around your head that need answering.

You might be ready to find out more about what it means to have Lobular Breast Cancer, and there is further information on our website. You might not be ready to learn more and that is ok. You can always return to our website to learn at your own pace.

Long-term Diagnosed

You may have been diagnosed with Lobular Breast Cancer a number of years ago and are only just learning more about the disease.

Your medical team may have mentioned that you had Lobular but you didn’t realise that it was a distinct disease that can behave differently from other types of breast cancer.

Finding out more about the disease you had, even many years afterwards, may help you to ensure that you are receiving the best monitoring for recurrence and that you know what signs and symptoms to look out for.

Depending on your diagnosis, you
might be treated for:

· Lobular Carcinoma in Situ or LCIS ( a risk factor for cancer but not cancer)
· Invasive Lobular Breast Cancer
· Secondary/Stage 4 Lobular Breast Cancer

There will be different treatments for each stage and your medical team will be able to explain to you what your options are.

There are a number of ways you can
support yourself by:

· Finding someone to talk with. This could be a friend or family member, or a trained counsellor or therapist. Ask your GP, doctor or Breast Care Nurse for recommendations, or see our list of support organisations.
· Give yourself time to fully understand what is happening and to gather the information you need to make the right decisions for you.
· Get support from the specialist breast cancer organisations such as Breast Cancer Now.
· Join a Lobular specific Facebook support group such as Linking Lobular Ladies where you can talk with other people who have also had a Lobular Breast Cancer diagnosis in the UK. Linking Lobular Ladies is an independent patient run group to provide support and conncetion for women who have had a Lobular diagnosis.


Lobular has the potential to recur even after a mastectomy or lumpectomy. Although not common, it can recur ‘locally’ near the original tumour site in places such as the scar tissue of a mastectomy, near the lumpectomy site or in the chest wall or it may spread to other areas of your body (distant recurrence). This can happen when a tiny seed of the disease has managed to escape removal and/or treatment and begins to grow again.

Being told you have you have a breast cancer recurrence can be hard and feel overwhelming. You may be feeling frightened but your situation is far from hopeless.

Treatment can eliminate local recurrences and people can live for many years with distance recurrence as symptoms can be controlled for a long time.

Please remember that the majority of people never have a Lobular Breast Cancer, or any other type of breast cancer, recurrence.

Secondary or Metastatic Lobular Breast Cancer

Breast cancer that has spread to other parts of the body away from the local area is often referred to as secondary, metastatic or Stage 4 cancer. It can travel through either your lymph or your blood vessels.

Terms like this can be frightening and it may help to understand what they mean and where tumours may spread to. Remember that 70% of people with an initial diagnosis do not develop metastatic disease.

Lobular Breast Cancer that has metastasised (spread) to other parts of the body can be similar in pattern to other breast cancers. Once it leaves the breasts, it may travel to the lymph nodes, bones, lungs, liver and brain but it can also be found in more unusual places. Lobular tumours can spread to the ovaries, reproductive tract, stomach, GI tract or digestive system, skin, the meninges (3 membrane layers that protect the brain and spinal cord from trauma) and the peritoneum (a thin layer of tissue made up of cells that line the abdomen).

Some diagnosis is called De Novo. This is when your breast cancer has already spread beyond your breast when you are very first diagnosed. This happens in about 6% of all breast cancer cases.

Lobular cells can lie dormant for  many years and are more likely to recur 10 – 15 years after the initial diagnosis. It can be hard to not be afraid, and we each have to find our own way to deal with this fear of recurrence. Your medical team may be able to provide you with psychological support to help you develop your own coping mechanisms.

Report any unusual symptoms you may experience to your medical team, such as: persistent pain or bone pain, headaches and dizziness, a hardening in your original scar, breast or chest, unusual fatigue, a rash that does not clear, new skin nodules.

The downloadable infographic below produced by abc diagnosis and approved by NHS England, is useful for your own information, and for sharing with your medical team. It shows the sites that Lobular can spread to and describes the signs and symptoms to look out for. Download it here

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Lobular Breast Cancer UK is a registered charity in England and Wales No. 1191402 Registered office: 83 Ducie Street, Manchester M1 2JQ