This is VERY important to read if you have had any lymph nodes removed. Your surgeon and nurses will explain the risk of lymphoedema to you when you are in hospital for your surgery. But, as with a lot of information which is given to you right now, you may not take in what they say so here is our top ten list of all things lymphoedema:
1. With fewer, or no, lymph nodes in your arm you are at risk of something called lymphoedema occurring in that arm. For those people who have nodes removed from both armpits, you are at risk of lymphoedema in both arms. And some people develop lymphoedema in their breasts. And we are at risk from now on. For ever. And ever. There is no cure for lymphoedema BUT the symptoms can be controlled.
2. Lymphoedema is a condition that causes your affected arm/hand/breast to swell up. We are not going to try to explain why that happens (far too technically medical for us) but if you want more information on the how’s and why’s we have listed some websites at the end of this section. Take a look at this helpful in graphic from Oxford Lymphoedema Practice
3. The swelling of the arm usually happens gradually but in some cases it can come on suddenly. You should look out for signs that indicate your arm might be about to start to swell as a result of lymphoedema. According to the NHS website :
“The main symptom of lymphoedema is swelling in all or part of a limb or another part of the body. It can be difficult to fit into clothes, and jewellery and watches can feel tight.
At first, the swelling may come and go. It may get worse during the day and go down overnight. Without treatment, it will usually become more severe and persistent.
Other symptoms in an affected body part can include:
• an aching, heavy feeling
• difficulty with movement
• repeated skin infections
• hard, tight skin
• folds developing in the skin
• wart-like growths developing on the skin and/or fluid leaking through the skin”
4. If you notice any of these signs, or your arm/hand/breast starts to swell, you need to seek medical assistance – call your breast care nurse, your GP or even one of the nurse helplines (Macmillan or Breast Cancer Now) who can advise you what to do. Medical treatment for lymphoedema includes draining the fluid and wearing a compression garment.
5. After breast cancer surgery it is worth taking steps in your everyday lives to avoid lymphoedema. This means avoiding infections in that arm, not over-using it and generally taking care of it. Your breast surgeon and nurses will give you some advice and the Cancer Research UK website has a good list of ways to help prevent lymphoedema. As does Breast Cancer Now.
6. If you have had the lymph nodes removed from your arm, then for the rest of your cancer treatment (and beyond) remember to not have blood tests, injections, IV and blood pressure on your bad arm. If you have had nodes removed from both arms then you can have blood pressure taken on your legs and your surgeon will tell you about having future injections in other parts of your body – not your arms.
7. Consider getting a medical bracelet to wear on your arm engraved with:
Risk of lymphoedema in [R/L] arm
No BP/IV/ needles in [R/L] arm
8. Ask your GP to refer you to your local lymphoedema service who can give you more advice about the risks and what to do if you develop lymphoedema.
9. DON’T PANIC if you develop lymphoedema. It can be controlled by lymphatic drainage massage and by wearing compression garments. Manual lymphatic drainage massage is where a trained practitioner uses a very light special massage technique to help move the lymph away from areas where there are no lymph nodes (such as your arm from where your lymph nodes have been removed) to other parts of your body where you have more lymph nodes (such as your back, chest, neck or stomach). It doesn’t hurt, but because toxins are moved around your body it is important to drink lots of fluids to flush them out. Depending on the amount of swelling, you will usually have the treatment for an hour every day for a number of weeks, and then this will be gradually reduced to the point where you would only need a maintenance session every month or less. More information is available on the Macmillan website.
10. Sara notes that she attended a talk given by two very lovely lymphatic drainage consultant practitioners: one of their suggestions was to have lymphatic drainage massages even if you show no signs of lymphoedema. This will help to “train” the lymph fluid in your at risk areas to drain towards other lymph nodes (such as those in your back).
HELPFUL RESOURCES AND MORE INFORMATION
Do take a look at some more information which is available about lymphoedema. There is a lot online. Here are some helpful websites but there are plenty more:
Breast Cancer Now booklet on living with lymphoedema after breast cancer surgery can be downloaded or ordered here
Lymph-what-oedema a website, practical advice, blogs, online community and follow on Twitter.
The National Lymphedema Network (a US organisation) have some really helpful guides on their site on risk reduction, air travel, healthy life style, exercise and diet.
To find a manual lymphatic drainage practitioner in your area, you can check out the Manual Lymphatic Drainage UK website.
MLDHERTS a website with a wealth of information about lymphoedema, lymphatic drainage and contact details should you wish to get in touch with them.
Follow the Oxford Lymphoedema Practice on Twitter for very useful help and advice about lymphoedema. They wrote a very helpful guest blog for this website about the surgical options for lymphoedema.
Have a listen to the My Breast Health podcast episode 25 which covers exercise in general and how it helps lymphoedema.
The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.
Reviewed July 2021