Lymphoedema: what you need to know

Lymphoedema is the build-up of fluid that can occur in the body’s tissues when lymph nodes are damaged or removed. Some breast cancer treatments, particularly surgery and radiotherapy, can cause lymphoedema. It can also be caused by an infection, scar tissue formation, trauma or deep vein thrombosis (a blood clot in a vein).

The Beacon spoke to two lymphoedema experts for advice about managing lymphoedema, and treatment options in both the public and private health system.

Anya Traill is Head of Occupational Therapy and Physiotherapy at the Peter MacCallum Cancer Centre in Melbourne

Anya Traill

How common is lymphoedema after breast cancer?

We are now seeing less lymphoedema as more people with early stage breast cancer undergo sentinel node biopsy. One lymph node, or a small cluster of two or three nodes, is removed to find out whether or not breast cancer has spread to the axilla (armpit) lymph nodes. This procedure leaves the other lymph nodes intact.

Post-surgery treatments such as radiotherapy can lead to lymphoedema. The length of the course of chemotherapy and medications used to manage side effects can also increase the risk of transient lymphoedema. Transient lymphoedema is a temporary increase in fluid levels in the arm, which goes away after a few months, but can increase your risk of developing lymphoedema in the future.

How can people reduce their risk of lymphoedema?

People need to have informed discussions with their doctors before they make decisions around treatment so they understand their risk of lymphoedema and what they can do to reduce their risk of developing it in the future.

The best way to reduce your risk is to get moving and maintain a healthy weight. There are many myths about how and when to start exercising after breast cancer and how much load you can put on your arm after axillary surgery. The best option is to aim for a gradual return to exercise.

Body tissue is usually repaired between four and six weeks after surgery. Unless there are any issues, such as infection or delayed wound healing, you can return to more strenuous exercise around this time.

This will help pump body fluid and reduce your risk of developing lymphoedema.

Water-based exercises can be excellent as the pressure of the water acts like a compression garment. Although we used to advise women to avoid weight lifting exercises for the affected arm following breast cancer surgery, we now know that mid- range weight bearing exercise can help.

Keeping your weight in a healthy range and losing even a small amount of weight can also help to reduce your risk.

There is no strong evidence that lymphatic drainage massage is more effective than exercise to manage early swelling. However, you may find there are other benefits from massage therapy, such as reducing tension and stress.

Are there ways that people can monitor their risk of lymphoedema?

Many hospitals now offer a surveillance service for one or two years after breast cancer surgery, which checks for signs of early lymphoedema so management strategies can start as early as possible. If a lymphoedema screening program is not available in your hospital you can ask your GP or specialist to refer you to someone who is lymphoedema trained. If you have signs of early swelling, ask your doctor for a referral to a lymphoedema therapist who can monitor this for you and implement compression therapy if swelling is increasing.

Around 80 per cent of lymphoedema cases develop in the first two years. However, risk management strategies such as maintaining a healthy weight and being active should be lifelong.

How does cording differ from lymphoedema?

Axillary web syndrome (AWS), also known as cording, sometimes develops as a side effect from lymph node surgery. Scar tissue from surgery to the chest area to remove the cancer can also contribute to cording. If it happens, cording typically occurs anywhere from several days to several weeks after surgery, although there have been individual cases where it appears many months later.

If you develop cording, you’ll often be able to see and/or feel a web or string of rope- like structures under the skin of your inner arm, particularly at tension points such as the armpit, elbow and wrist. Like lymphoedema, it can also occur across the chest wall.

If you develop signs of cording, don’t panic, continue to do a range of arm exercises and seek help from your medical team. Moving and stretching under the guidance of an experienced therapist are the best ways to resolve it and stop the pain that it can cause. For most people cording resolves within around six to eight weeks. For more stubborn cording that is hard to move, physiotherapy may be required.

Approximately 20% of people diagnosed with breast cancer will develop lymphoedema

Petrina Burnett is a women’s health physiotherapist who specialises in treating women with breast and gynaecologic cancers. Petrina was diagnosed with breast cancer when she was 31 and is a BCNA member and Consumer Representative

Petrina Burnett

How do I find a lymphoedema therapist?

Many breast oncology teams include lymphoedema and breast physiotherapists or occupational therapists (OTs), so talk to a member of your treating team about whether one is available to you.

The Australasian Lymphoedema Association (ALA) has a National Lymphoedema Practitioners Register (NLPR), which lists accredited lymphoedema therapists (physiotherapists, OTs, nurses and massage therapists) who have completed post-graduate training and who maintain regular continuing education. Visit lymphoedema.org.au.

Can I get a rebate for lymphoedema treatment?

Most private health insurance policies provide a rebate for lymphoedema treatment.

However, it is a good idea to contact your fund to ask about your level of cover as these can vary. A GP referral isn’t necessary, but is preferred by some lymphoedema practitioners.

A Medicare rebate may also be available if you have a Chronic Disease Management plan drawn up for you by your GP. This plan covers up to five appointments with allied health professionals per calendar year. Your GP will liaise with the lymphoedema therapist (who must be a physiotherapist or OT) about your care.

How much do lymphoedema therapists charge?

Charges vary and are usually based on the therapist’s level of experience, qualifications, location and the length of the appointment. Some practices have additional equipment for assessment, such as bio-impedance analysers, and treatments such as intermittent compression pumps and laser. It is advisable to ask about the cost upfront. There is usually a gap payment you will have to pay.

If you have an Enhanced Primary Care plan and can claim your treatment through Medicare, there is a rebate of about $53. If you reach the Medicare safety net, the gap charges can reduce considerably.

Can I get a rebate for compression garments and bandages?

Most private health insurance policies provide a rebate for compression garments. However, the amounts vary from about $200 to $400 per calendar year. There can also be out-of-pocket costs for bandaging and other lymph materials such as mobiderm and taping.

Medicare does not cover any garments or materials.

Some state governments have programs that subsidise the cost of garments, such as the State-wide Equipment Program in Victoria. Talk to your lymphoedema therapist about whether your state/territory has a program you may be eligible for.

What is being done to improve services?

Unfortunately, lymphoedema funding and access to services is very limited. BCNA is working closely with lymphoedema action groups around the country o try to change this.

For more information, read BCNA’s lymphoedema fact sheet at bcna.org.au
Issue 82
Autumn 2018