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Lymphoedema after pelvic radiotherapy
Lymphoedema is a long-term condition that causes swelling in parts of the body. After cervical cancer treatment, the swelling often happens in the lower limbs, stomach or genitals.
We know that lymphoedema can have a big impact on your life and emotional wellbeing. It may help to know that, with management techniques and support, many people with lymphoedema have a good quality of life.
About lymphoedema
Lymphoedema is pronounced lim-foe-dee-ma. It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.
Lymphoedema after cervical cancer treatment is known as secondary lymphoedema. This means it has been caused by damage to the lymphatic system – in this case, usually pelvic radiotherapy or lymph node removal.
If your lymphatic system has been damaged by treatment, you are at risk of lymphoedema for life. This means you could develop it at any time. We talk through some things you can do to lower your risk on this page.
There is no cure for lymphoedema, but there are techniques and support to help you manage it.
Reducing the risk of lymphoedema
If your lymphatic system being damaged by treatment , it doesn’t mean you will definitely develop lymphoedema. But you are at risk of lymphoedema and it could develop at any time. There are things you can do to reduce this risk.
Skin care
Look after the skin in the area where you had treatment. Try to keep the skin clean and avoid cutting or grazing it. You can moisturise every day and, if you go outside, remember to wear sun cream with a high SPF.
Check your skin
Spend a few minutes each day checking the area where you had treatment. It is a good idea to check your:
- groin
- legs
- lower stomach.
You are looking for signs of infection . This could be:
- the skin looking red
- the skin feeling warm
- a new or painful swelling
You may also have a high temperature (fever). If you have any of these symptoms, or are worried about something we haven’t mentioned, tell your GP straight away. They should be able to treat an infection with antibiotics.
Exercise
Exercise can increase lymph fluid flow around the body, which means it is less likely to build up. You can talk to your healthcare team about exercises that would suit you after treatment. They may suggest beginning with some stretches and working up to exercises like yoga or swimming.
Read about reducing risk on the Lymphoedema Support Network’s website >
Managing lymphoedema
There are techniques that you can use to manage the symptoms of lymphoedema. You may need to try a few different techniques before you find what works best for you.
Speaking with your healthcare professional
You don’t have to figure out everything about managing lymphoedema on your own. Your healthcare professional is there to offer support and advice, and may be able to suggest something specific to your situation.
You can speak with:
- your GP
- your clinical nurse specialist (CNS)
- your cancer doctor (consultant).
It can help to speak to a healthcare professional you already know, trust and who has an understanding of your medical history.
It can help to explain the impact lymphedema is having on your life, so they can understand the level of support you need. You may like to write down what you experience day-to-day or keep a diary of what causes the lymphedema to flare up.
Read more about getting a diagnosis >
Skin care
Lymphoedema can cause your skin to dry out and crack, which puts you at risk of infection. This is sometimes called cellulitis. You can reduce the risk of cellulitis by:
- keeping your skin clean
- moisturising daily
- drying the affected area carefully after washing.
It is also important to be careful not to cut your skin, as lymphoedema this can make it more likely to become infected. You may be advised to not shave to avoid this. If you do shave, it’s a good idea to invest in a quality razor and change the blade often.
The Lymphoedema Support Network has a detailed guide on caring for your skin after a lymphoedema diagnosis. They also have a support line that you can call for extra tips.
Read the Lymphoedema Support Network’s guide >
Compression garments
Wearing elastic compression garments can give you external support and prevent the swelling from building up. The compression garments are like socks or stockings.
Exercises
Gentle exercise, movement and deep breathing are important for increasing your circulation and the flow of lymph fluid. Keeping active also helps you maintain a healthy weight, which can help to reduce the swelling.
Try to start slowly and build up as you feel ready. Some good exercise options include:
- walking
- swimming
- gentle stretching
- yoga
- Pilates.
Massage
Lymphatic drainage is a type of specialised massage for lymphoedema. It encourages the lymph fluid to drain away from the swollen area.
A specialist can teach you, or a friend or partner how to do a simple lymphatic drainage massage, so you can do it at home. This specialist could be a clinical nurse specialist (CNS), physical therapist, occupational therapist, or a healthcare professional with a different title.
Your GP or hospital healthcare team can usually refer you to a specialist. They may also suggest you have a short course of manual lymphatic drainage treatments with a specialist.
The Lymphoedema Support Network has information and videos about different types of massage, including ones you can do at home.
Visit the Lymphoedema Support Network website >
Lifestyle changes
You may want to make changes in your day-to-day life to avoid the lymphoedema flaring up.
Feeling stressed or emotional for any reason can cause your heart to beat faster, which leads to the blood pumping around the body faster. This also means lymphatic fluid is being pumped around your body too. This fluid would usually be drained by the lymph nodes but, if they have been removed, there is nowhere for it to go and it causes swelling. This means that looking after your emotional wellbeing is especially important.
Stimulants like caffeine, alcohol or spicy foods can have the same effect, so it can help to cut down or stop your intake altogether.
Getting support with lymphoedema
Your healthcare team should be your first point of contact about lymphedema. That might be your GP, CNS or another member of your hospital healthcare team. Whether you have been diagnosed or are worried about it, they can assess you based on your medical history, answer any questions, and refer you to a specialist if needed.
Accessing support for PRD, including lymphoedema, may be more difficult at the moment because of the coronavirus pandemic. If you are not sure where to turn, you can give our free Helpline a call on 0808 802 8000. Our trained volunteers can talk through your options or simply listen to what’s going on.
Check our Helpline opening hours >
Sometimes connecting with others who have gone through a similar experience can be helpful. Our online Forum lets our community give and get support. You can read through the messages or post your own – whichever feels most comfortable.
Useful organisations
Lymphoedema Support Network (LSN)
They have lots about lymphoedema on their website, including self-management videos that may be useful to watch. They also have an online community where you can give and get support.
British Lymphology Society (BLS)
They have a directory for local services and support groups, so you can find out what is available in your area.
Pelvic Radiation Disease Association (PRDA)
A UK charity providing information about PRD. Has an online community as well as hosting national and local events for people with PRD.
Action Radiotherapy
A UK charity dedicated to improving radiotherapy treatments. Provides information about radiotherapy, including side effects.
Thank you to all the experts who checked the accuracy of this information, and the volunteers who shared their personal experience to help us develop it.
References
- Rockson, S. et al (2019). Cancer-associated secondary lymphoedema. Nature Reviews. Disease Primers. 5;1. pp.22.
- Keeley, V. (2017). Advances in understanding and management of lymphoedema (cancer, primary). Current Opinion in Support and Palliative Care. 11;4. pp.355-360.
- Biglia, N. et al (2017). Lower Body Lymphedema in Patients with Gynecologic Cancer. Anticancer Research. 37;8. pp.4005-4015.
- Lee, Y. et al (2016). Comparison of Quality of Life and Sexuality between Cervical Cancer Survivors and Healthy Women. Cancer Research and Treatment. 48;4. pp.1321-1329.
We write our information based on literature searches and expert review. For more information about the references we used, please contact [email protected].
"I’ve come to accept the changes to my body, my mental health and my lifestyle. I hope that by sharing what it’s like and what helped me, I can offer some support"
Read Nicola's blog "There is no one size fits all approach, and you have to try and find things that works for you. It is something that can be managed, so keep looking for alternatives and things that help you personally."
Read Cat's story Date last updated:
29 Oct 2020
Date due for review:
29 Oct 2022