Invasive lobular breast cancer Factsheet

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1 Invasive lobular breast cancer Factsheet This factsheet is for people who would like more information about invasive lobular breast cancer. It describes what invasive lobular breast cancer is, the symptoms, how a diagnosis is made and possible treatments.

2 02 03 We hope that this information helps you to discuss any questions you may have with your breast cancer specialist or breast care nurse. You may also find it useful to read our Treating breast cancer booklet. What is invasive lobular breast cancer? The breasts are made up of lobules (milk-producing glands) and ducts (tubes that carry milk to the nipple), which are supported by glandular, fibrous and fatty tissue. Breast cancer starts when cells in the breast begin to divide and grow in an abnormal way. Invasive lobular breast cancer occurs when these abnormal cancer cells have started in the lobules and have begun to spread outside these, and into the surrounding breast tissue. Invasive lobular breast cancer accounts for approximately per cent of all breast cancers. It can occur at any age but is most common in women between 45 and 55 years of age. Sometimes more than one area of invasive lobular cancer Visit is found within the same breast. In a small number of women it can sometimes be found in both breasts. Someone who has breast cancer in one breast has a very slightly higher risk of developing cancer in the opposite breast than someone who has never had breast cancer. With invasive lobular breast cancer, this risk may be slightly higher than with other types of breast cancer, but is still very low overall. Men can also get invasive lobular breast cancer but this is very rare. What are the symptoms? Invasive lobular breast cancer does not always produce obvious symptoms, and the changes can be quite subtle. It is most likely to be found as a hardening and/or a thickening of the breast tissue rather than a firm, distinct lump. Call our helpline on

3 04 05 How is a diagnosis made? Invasive lobular breast cancer can be difficult to diagnose if there are no obvious symptoms. It may be seen on a mammogram (breast x-ray), so in some women invasive lobular breast cancer is found when attending routine breast screening. However, some invasive lobular breast cancers can be difficult to see on a mammogram as the changes can be very subtle. Because of this the actual size of the cancer may be underestimated by both the examination from the doctor, and the mammogram findings. Magnetic resonance imaging (MRI) may also be used to assess the size of the cancer, particularly if there is a difference between the findings of the clinical examination, the ultrasound and the mammogram. MRI scans use magnetic fields and radio waves to build up an image of the inside of the breast and can sometimes provide a more accurate picture of the size of this type of cancer than a mammogram. Other tests will be done to make the diagnosis when you have been referred to a breast specialist. As well as a mammogram these include an ultrasound scan of the breast and the axilla (under the arm), core biopsy and possibly a fine needle aspiration (FNA). If you d like more information about these tests please see our Referral to a breast clinic booklet. Visit Call our helpline on

4 06 07 What are the treatments? Surgery Breast surgery tends to be the first treatment for invasive lobular breast cancer. This may be a mastectomy (the removal of all the breast tissue and nipple area), or breast-conserving surgery (the removal of the cancer and an area of normal breast tissue around the cancer). The type of surgery recommended will depend on the area of the breast affected, the size of the cancer relative to the size of your breast and whether there is more than one area in the breast affected. If breast-conserving surgery is being considered, an MRI scan may be recommended to assess the size of the cancer. Your breast surgeon will discuss this with you. Occasionally it can still be difficult to estimate the exact size of an invasive lobular breast cancer before surgery, even after an MRI scan. Because of this some women who have breast-conserving surgery for invasive lobular breast cancer may need a second operation to ensure there is a clear margin of tissue around the area, and that all the cancer has been Visit removed. In some cases a mastectomy will be recommended as the second operation. Invasive lobular breast cancer can affect more than one area within the breast. If this is the case the breast surgeon may recommend a mastectomy, but this will depend on the position of the areas affected, and the size of your breast. If a mastectomy is recommended, or if you choose to have a mastectomy, you will usually be able to have breast reconstruction. This can be done at the same time as your mastectomy (immediate reconstruction) or at a later date sometime in the future (delayed reconstruction). If you d like more information please see our Breast reconstruction booklet. Your doctors will also want to check whether breast cancer cells have spread from the breast to the lymph nodes (glands) under the arm. This will help them decide whether you will need additional treatment after surgery. Call our helpline on

5 08 09 To check if any lymph nodes under the arm are affected, your breast surgeon may wish to remove some of the nodes (a lymph node sample) or all of the nodes (a lymph node clearance) during the breast surgery. Another way of checking the lymph nodes is called sentinel node biopsy. This checks whether or not the first lymph node (or nodes) is clear of cancer cells. If it is, this usually means the other nodes are also clear. If this is the case, removal of most of the lymph nodes under the arm may be avoided for those people whose nodes are clear. However, sentinel node biopsy is not appropriate for everyone and your surgeon will discuss whether or not this procedure is an option for you. For more information, see our Treating breast cancer booklet. What are the additional (adjuvant) treatments? After surgery you may need medical treatment. This is called adjuvant (additional) therapy and includes chemotherapy, radiotherapy, hormone therapy and targeted therapies. The aim of these treatments is to reduce the risk of breast cancer cells returning in the same breast or the opposite breast or spreading somewhere else in the body. Radiotherapy If you have breast-conserving surgery you will usually be given radiotherapy to reduce the risk of the breast cancer returning in the same breast. Radiotherapy to the chest wall may also be given following a mastectomy, for example if some lymph nodes under the arm are affected. For more information about radiotherapy please see our Radiotherapy for primary (early) breast cancer booklet. Visit Call our helpline on

6 10 11 Chemotherapy Chemotherapy is recommended for some people. This will depend on various features of the cancer, such as its size, its grade (how quickly the cells are dividing and how different they are to normal breast cells) and whether the lymph nodes are affected. If you d like more information please see our Chemotherapy for breast cancer booklet. Hormone (endocrine) therapy All cancers are tested using breast tissue from a biopsy or after surgery to see if they are hormone sensitive (oestrogen receptor positive or ER +ve). Cancers that are hormone sensitive have receptors on the cell surface that bind to the female hormone oestrogen which stimulates the cancer cell to grow. Most invasive lobular cancers are oestrogen receptor positive, which means that your doctors may recommend that you have hormone therapy. Hormone therapies work in different ways to block the effect of hormones on cancer cells. There are a number of drugs and your doctor will tell you which one they think is most appropriate for you. If oestrogen receptors are not present (oestrogen receptor negative or ER -ve) tests may be done to find out whether the breast cancer is sensitive to progesterone, another hormone. If you would like more information, please see our Treating breast cancer booklet or our individual hormone drug factsheets. Targeted cancer therapies This group of drugs work by stopping specific ways that breast cancer cells divide and grow. The best known targeted therapy is Herceptin (trastuzumab) but the benefits of others are being looked at in clinical trials, so it is likely more targeted therapies will become available in the future. Only people whose cancer has high levels of HER2 (HER2 positive), a protein that makes cancer cells grow, will benefit from having Herceptin. There are various tests to measure HER2 levels which are done on breast tissue removed by biopsy or during surgery. If your cancer is found to be HER2 negative, then Herceptin Visit Call our helpline on

7 12 13 will not be of any benefit to you. Most invasive lobular cancers are HER2 negative. For more information see our Herceptin (trastuzumab) factsheet. For more information see our booklets on: Treating breast cancer BCC74 Referral to a breast clinic BCC70 Breast reconstruction BCC7 Radiotherapy for primary (early) breast cancer BCC26 Chemotherapy for breast cancer BCC16 Herceptin (trastuzumab) BCC41 To order, or download a copy, please visit publications Visit Call our helpline on

8 14 15 Further support Breast Cancer Care Breast Cancer Care is here to support you. From diagnosis, throughout treatment and beyond, our services are here every step of the way. Our free, confidential helpline is here for anyone who has questions about breast cancer or breast health. Your call will be answered by one of our nurses or trained staff members with experience of breast cancer. Our website gives instant access to information when you need it. It s also home to the largest online breast cancer community in the UK, so you can share your questions or concerns with other people in a similar situation. Our One-to-one support service can put you in touch with someone who knows what you re going through. Just tell us what you d like to talk about and we can find someone who s right for you. Through our professionally-hosted discussion forums you can exchange tips on coping with the side effects of treatment, ask questions, share experiences and talk through concerns online. If you re feeling anxious or just need to hear from someone else who s been there, they offer a way to gain support and reassurance from others in a similar situation to you. We host weekly Live chat sessions on our website offering you a private space to discuss your concerns with others getting instant responses to messages and talking about issues that are important to you. If you find it difficult to talk about breast cancer, we can answer your questions by instead - our Ask the nurse service is available on the website. Visit Call our helpline on

9 16 17 Telephone support groups offer the chance to be part of a regular support group which you can join easily by phone. We run Information and support sessions and courses for people living with and beyond breast cancer, bringing people together to share experiences. We also offer practical sessions to help with issues such as hair loss and finding a suitable bra after surgery. We also offer specific, tailored courses to younger women, and people living with secondary breast cancer. Our free information resources for anyone affected by breast cancer include factsheets, booklets and DVDs. You can order our publications by using our order form, which can be requested from the helpline. All our publications can also be downloaded from our website. To request a free leaflet containing further information about our services please contact your nearest centre or visit publications Other organisations Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ General enquiries: Helpline: Website: Textphone: or Text Relay Macmillan Cancer Support provides practical, medical, emotional and financial support to people living with cancer and their carers and families. Over the phone, its cancer support specialists can answer questions about cancer types and treatments, provide practical and financial support to help people live with cancer, and are there if someone just wants to talk. Its website features expert, high-quality information on cancer types and treatments, emotional, financial and practical help, and an online community where people can share information and support. Macmillan also funds expert health and social care professionals such as nurses, doctors and benefits advisers. Visit Call our helpline on

10 This factsheet can be downloaded from our website, org.uk It is also available in Braille on request by phoning This leaflet has been produced by Breast Cancer Care s clinical specialists and reviewed by healthcare professionals and people affected by breast cancer. Centres London and the South East of England Telephone src@breastcancercare.org.uk Wales, South West and Central England Telephone cym@breastcancercare.org.uk East Midlands and the North of England Telephone nrc@breastcancercare.org.uk We are able to provide our publications free of charge thanks to the generosity of our supporters. We would be grateful if you would consider making a donation today to help us continue to offer our free services to anyone who needs them. Please send your cheque/po/caf voucher to Breast Cancer Care, FREEPOST RRKZ-ARZY-YCKG, 5 13 Great Suffolk Street, London SE1 0NS Or to make a donation online using a credit or debit card, please visit www. breastcancercare.org.uk/donate-to-us All rights are reserved. No part of this publication may be reproduced, stored or transmitted, in any form or by any means, without the prior permission of the publishers. Scotland and Northern Ireland Telephone sco@breastcancercare.org.uk

11 Breast Cancer Care is here for anyone affected by breast cancer. We bring people together, provide information and support, and campaign for improved standards of care. We use our understanding of people s experience of breast cancer and our clinical expertise in everything we do. Visit or call our free helpline on (Text Relay 18001). Interpreters are available in any language. Calls may be monitored for training purposes. Confidentiality is maintained between callers and Breast Cancer Care. Central Office Breast Cancer Care 5 13 Great Suffolk Street London SE1 0NS Telephone Fax info@breastcancercare.org.uk Breast Cancer Care, April 2010, BCC94 Registered charity in England and Wales ( ) Registered charity in Scotland (SC038104) Registered company in England ( ) Printed on recycled paper please recycle

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