Lymphoedema
This Navigator topic is your stepping stone to finding quality, current information on secondary lymphoedema caused by surgery for breast cancer, from a range of reputable sources. is not meant to be comprehensive, but rather to provide a starting point to information seeking.
The information in this topic is aimed at women who have had surgery to their lymph nodes for the treatment of early breast cancer – and who may be at risk of being affected by, or are suffering from, secondary lymphoedema. It is important to have access to quality information in order to understand your risk of developing lymphoedema, and how to manage it.
Last Updated: 9 July, 2024 10:37 am
Lymphoedema is the accumulation of excessive amounts of fluid resulting in swelling of one or more regions of the body. Secondary lymphoedema arises because the lymphatic system has been damaged in some way. It is the most common type of lymphoedema.
Cancer Australia conducted a review of research on evidence related to secondary lymphoedema and found that breast cancer surgery appears to be the most common cause of upper-limb secondary lymphoedema in Australia.
Early detection is the key to success in managing lymphoedema well. It is important to seek help early if you notice symptoms. Whilst it can’t be cured, the swelling and symptoms of moderate lymphoedema can be reduced and managed well with the right help.
“In my experience the possibility of lymphoedema was incorporated into pre-operative consultations with the breast clinic team. As soon as my diagnosis was confirmed I was told about it by the doctor and then briefed in more detail by the breast care nurse. At my pre-op clinic the physios were there and took measurements, gave me exercise sheets and went through the exercises with me. Check-ups were incorporated into my post-operative breast clinic appointments. It was made known to me that I could contact the Lymphoedema Clinic at any time outside my regular check-ups if I had problems or queries. The practitioners made it clear that many things were not really known, but also that their program was based on the evidence that was known. With the treatment I received I feel that lymphoedema WAS acknowledged”. (Vivien – Counterpart service user, 2013)
Not all treatment teams are the same when it comes to minimising your risk of developing lymphoedema before and after surgery. It is important to be armed with information and to feel that you are able to talk about your concerns. There are resources in this Navigator that can prepare you to do this.
The purpose of this Navigator is to guide you to information about secondary lymphoedema following surgery for early breast cancer. It does not constitute an endorsement of the information contained in the resources by Counterpart. This information is not meant to be a replacement for consultations with and recommendations from your treating team, but rather to provide a starting point to information seeking. If you are unsure about anything, you should always consult your medical team.
When seeking information about lymphoedema you may wish to take into account the following suggested questions. You might want the answers to some of the questions straight away, while some may become important later on. Some questions might not matter to you at all. The resources within the other sections of this Navigator may answer some of the questions for you, or you can use them as a guide to put together your own questions for your breast surgeon, breast care nurse, lymphoedema practitioner or other member of your health care team.
- What can I do to reduce my risk of lymphoedema?
- Do I need to lose weight?
- What type of moisturiser should I use, and why is skin care so important?
- Is it safe to travel and what precautions should I take?
- Will I have lymphoedema for ever or will it eventually go away?
- Are there any techniques I can use at home to help my lymphoedema?
- What treatment do you recommend for my lymphoedema?
- Can you refer me to a qualified lymphoedema practitioner?
- What is Manual Lymphatic Drainage (MLD)?
- Why do I have to wear compression garments and how do I get them prescribed?
- Where can I get a compression garment fitted and prescribed?
- How much will compression garments cost me?
- How might my lifestyle be affected?
- How might my work be affected?
- Is there any medication which I can take to help my lymphoedema?
- What types of exercises do I need to do?
- Is it safe for me to go to the gym if I have lymphoedema?
- Who should I contact if I notice signs of an infection in my lymphoedema limb?
- What is cellulitis?
- What is the treatment for cellulitis?
- Should I keep some antibiotics at home?
- If I change doctors should I tell them about my cancer treatment?
- Who should I contact if I have concerns about my lymphoedema?
- Can I talk to someone about how I am feeling?
These listings provide links to the websites of organisations with a particular focus on lymphoedema. The link will direct you to the organisation's home page where you can search their site independently.
Australasian Lymphology Association (AUS)
The Australasian Lymphology Association (ALA) aims to improve the management of those with, or at risk of developing lymphoedema. It is not breast cancer specific. It includes a national lymphoedema practitioners register for finding a practitioner in your local area.
Lymphoedema Association of Australia (AUS)
The Lymphoedema Association of Australia provides information and support for those with lymphoedema. It aims to increase awareness, education and research about lymphoedema. The site includes links to contacts for local support groups.
Lymphoedema Support Network (UK)
A UK consumer-based organisation for people with lymphoedema. The website has information about the condition for both patients and health care professionals.
This list features links to key pieces of evidence-based information directly related to lymphoedema, and includes downloadable fact sheets, pamphlets, or PDF documents and web pages. Information resources provided below do not imply promotion or endorsement of particular third-party services. Please speak with your own treating team for medical information and referral to services.
Counterpart - 'Lymphoedema' webinar 2023 (VIC)
Learn about what lymphoedema is, the early warning signs, how to minimise the risk of developing lymphoedema and what to do if it develops. The impact of exercise and massage, as well as where to find assistance, are covered. Physiotherapist Helen Eason gives us a 2023 update.
Counterpart - Scars, cording & swelling: recovery after breast cancer surgery 2020 (VIC)
A physiotherapist and lymphoedema practitioner shares information and practical tips for managing scars, cording and swelling following breast cancer surgery. Webinar.
Breast Cancer Network Australia (BCNA) - Understanding lymphoedema following breast cancer treatment 2019 (AUS)
BCNA online information session discussing what lymphoedema is, why it develops as a result of breast cancer treatment, signs and symptoms and how to prevent it. You will need to register to watch this free webcast recording.
Breast Cancer Network Australia (BCNA) - Living with lymphoedema, the conversation continues 2019 (AUS)
Follows on from previous BCNA webcast. You will need to register to watch this free webcast recording.
Australasian Lymphology Association - YouTube channel (AUS)
Videos advising on self care and general guidelines for people who have been diagnosed with lymphoedema. The video 'Lymphoedema Arm' is particularly useful and is also available on DVD from the Counterpart library (see Offline Resources section of this app).
Breast Cancer Network Australia (BCNA) - My Journey online tool 2018 (AUS)
Formerly the My Journey Kit, this tool is now online. Sign up to access information that can be tailored to your own situation. Find lymphoedema under the side effects section.
Cancer Australia - Lymphoedema – What You Need to Know 2023 (AUS)
Click the 'Download PDF' button for this booklet covering signs and symptoms of lymphoedema, reducing your risk and coping with lymphoedema.
Westmead Breast Cancer Institute - Lymphoedema 2014 (AUS)
Read online or click the PDF link at the top of the page for this brochure about lymphoedema produced by the Westmead Breast Cancer Institute in NSW.
Macmillan - Lymphoedema (UK)
While not specific to breast cancer, and based on UK information, this site provides easy-to-read, reliable information on recognising and treating lymphoedema following cancer treatment.
Breast Cancer Network Australia - Lymphoedema (AUS)
A web page on Breast Cancer Network Australia's (BCNA) web site. It includes comprehensive information on lymphoedema including a fact sheet, tips for travelling with lymphoedema, information about the government subsidised compression garment program and exercise related information.
Australasian Lymphology Association Position Statements (AUS)
A page on the Australasian Lymphology Association (ALA) website containing PDFs of their position statements, including 'Monitoring for the Early Detection of Breast Cancer Related Lymphoedema'.
Macmillan Cancer Support - Top Tips for the Self-Management of Lymphoedema (UK)
A booklet produced by Macmillan Cancer Support in the UK, based on a Scottish project. It is written by people with lymphoedema and their carers and offers a guide to how you can manage your own condition and access the help you need.
These resources are a list of hard copy resources such as books and DVDs that are not readily available online.
Lymphoedema: survive and thrive. Version 1: Arm & chest 2013 (AUS)
This DVD empowers people with lymphoedema to understand their condition and work to manage their condition themselves, as much as possible. 40 mins.
(Also available online. See Online Resources section of this app, as this is also available on YouTube.)
Australasian Lymphology Association, 2013
Yoga for secondary arm lymphoedema
DVD exercise program aimed at increasing lymphatic draining of the arms, and also reducing stress. Consists of an introduction to the program, two lessons and a candle meditation. 2hr 48 mins
Australasian Lymphology Association, 2013
The Lymphoedema Handbook: Causes, Effects and Management (AUS)
Neil is a Lymphologist and Director of the lymphoedema Research Unit at Flinders University. in South Australia. This book discusses the lymphatic system, lymphoedema and approaches to managing lymphoedema. Although it is more than 10 years old now, the information is still relevant.
Piller, N. et.al., Michelle Anderson Publishing, 2006.
This list features websites containing personal stories both written and in video format, and includes blogs and online forums.
Please note: The information contained in these links reflects the personal experiences of individuals and does not necessarily constitute evidence-based research or information. Please consult your treating team for advice on your individual situation.
Rural Cancer Stories: Heather, Lower South-East
This short video in the Rural Cancer Stories series features Heather. She was diagnosed with breast cancer at 41 years old, and explains her experience of diagnosis, mastectomy, reconstruction, using a partial prosthesis and managing lymphoedema.
Australasian Lymphology Association - YouTube channel (AUS)
Marie Henderson, Judith Hammond, Christine Ashton, Carol Walker and Catherine Ireland tell their stories of lymphoedema following breast cancer surgery.
Lymphoedema Support Group NSW - "Lymphoedema Stories - The Untold Truth" (AUS)
A booklet published on the website of The Lymphoedema Support Group of NSW. It contains information about Lymphoedema and how to manage it, with lots of accounts of people's personal experience of living with Lymphoedema. View online or contact Counterpart for a hard copy.
Macmillan - Living with Lymphoedema (UK)
In this cancer information video Irene and Betty talk about what it's like to live with lymphoedema and compression garments (sleeves) after having a mastectomy for breast cancer.
Step Up, Speak Out (US)
A consumer focused website on lymphoedema including women’s written experiences of living with lymphoedema in the personal stories section.
Lymph Notes (US)
A consumer focused website on lymphoedema including women’s written experiences of living with lymphoedema in the personal stories section. Note that many of the stories relate to primary lymphoedema rather than lymphoedema as a result of cancer treatment.
Counterpart (formerly BreaCan) (AUS)
Counterpart is a unique free information and support service for Victorian women living with breast or gynaecological cancers. You can speak with trained peer support volunteers who have experienced cancer themselves.
Breast Cancer Network Australia online network (AUS)
This section of the BCNA website includes discussions by individuals and groups of people in similar situations, including those who have experienced lymphoedema after surgery for breast cancer. Search 'lymphoedema'. Please note that advice from individuals on a forum is not medical advice. Speak to your treating team for advice on your situation.
Breastcancer.org - Forum: Lymphedema (US)
This US-based website includes an online question and answer forum about lymphoedema covering risks, tips for prevention, and information about products that can address the symptoms of lymphoedema. Please note that advice from individuals on a forum is not medical advice. Speak to your treating team for advice on your situation.
Know a personal story we should share? Give feedback below.
