Lymphoedema Q & A
Thanks to the wonderful @ladylymphoedema for answering some important questions about the risks and treatment of lymphoedema following breast cancer treatment. Oh, and she busts a few old lymphoedema myths. Everything you need to know about lymphoedema is here…
What is lymphoedema?
Lymphoedema is the collection of fluid (called lymph) in a part of the body. It occurs either because there is too much fluid for a normal, happy lymphatic system to process, or the lymphatic system isn’t working properly. The lymphatic system is a super important part of our body, with many jobs, one of those being to drain excess fluid from around our cells, and eventually return it back to our blood stream. It really is a super handy little system that’s taken for granted. It’s poorly researched, and its role in keeping our body swelling-free has been under-recognised until the last decade or so. You might find that most people have never heard of the lymphatic system, or lymphoedema. This is super frustrating for those with (or at risk of) lymphoedema, but I promise you, things are changing.
There are 2 general types of lymphoedema, primary and secondary.
Primary lymphoedema is when you are born with a less-than-perfect lymphatic system. Either the bits that make up the lymphatic system aren’t working as they should, or they’re simply not there. This results in swelling of these area(s). In primary lymphoedema, this is present from birth. However, it may not ‘show up’ until later in life, or when the lymphatic system is pushed to its limits. For example, in the context of pregnancy, injury, surgery or becoming overweight etc.
Secondary lymphoedema develops when something is done to a previously happy lymphatic system. For example, breast cancer surgery where lymph nodes are removed or damaged. This is called breast-cancer-related-lymphoedema (BCRL).
While both primary and secondary lymphoedema are not curable at this time, there are soooo many things that you can do to manage it. It’s like brushing your teeth. Tooth decay / wear and tear is essentially inevitable. So, we brush our teeth. Floss. Use that blue mouth wash stuff. We do it daily. Twice daily! We just get on with it! It’s the same with lymphoedema. Just add a few extra things into the routine and voila! A happier lymphatic system!
Who is at risk of BCRL?
Almost everyone receiving treatment for breast cancer has some degree of risk. Key risk factors include surgery, lymph node removal, radiotherapy and chemotherapy (taxanes). The more lymph nodes removed or damaged, the higher the risk. You might hear things like, axillary clearance or axillary dissection. After procedures like this, all or most of the lymph nodes may be removed, which is like removing the drainpipes from your shower. The water isn’t going to drain without a little help! (Introducing…lymphoedema risk-reduction-education and treatment! More on that later.)
Does it matter how many lymph nodes were removed?
If you have had what’s called a sentinel node biopsy, often only one or two nodes have been removed. So, in the case of the shower example, you’ve still got a few pipes left and so the ‘shower’ may still drain ok. However, if all the pipes are removed (as in the case of axillary dissection / clearance) the risk of developing lymphoedema is much higher. Generally, the risk of developing lymphoedema is less than 10% after a sentinel node biopsy, and somewhere around 24-40% (or more) in the case of axillary dissection / clearance and increases with a number of things including other treatment (radiotherapy, chemotherapy), infection of the post-op area, having a sedentary lifestyle (not moving very much), or being (or becoming) overweight.
I’ve had some lymph nodes removed during my breast cancer surgery, what can I do to prevent myself developing lymphoedema?
Such a good question! There is soooo muuuch you can do! But the trouble is, still, lots of people aren’t made aware of their lymphoedema risk. This is bad…but is changing. Hopefully if you are at high risk for developing lymphoedema, you have already been referred to your local lymphoedema service for surveillance. If not, start here by seeking out a referral. Other risk-reduction strategies include…
- look after your skin (this prevents the risk of cellulitis, and therefore further damage to the lymphatic system)
- move your body (if you’re not moving, neither is your lymphatic system)
- keep your weight down (being overweight is really, really bad news for lymphatic drainage, so it’s important to keep your body as healthy as you can by exercising regularly, eating whole foods (stuff that’s fresh) and seeking support where necessary from a qualified health professional)
- consider compression garments (for this, you’ll need a lymphoedema practitioner who can assess and make recommendations / measure correctly / assist with ordering…amazon.co.uk just won’t do.)
For more information, check out this brilliant resource from the National Lymphoedema Network.
What are the signs I need to look out for which might mean I’m developing lymphoedema?
I guess the most obvious one here is seeing actual swelling. Your ring or watch may not fit properly in the case of arm lymphoedema. However, you don’t need swelling to be diagnosed with lymphoedema. In fact, stage 0 lymphoedema has no swelling at all, but you can just ‘feel something’. Heaviness, an ache, tightness, and maybe a teeny amount of swelling (if any) towards the end of the day that goes away by the next morning. This would be a cue to get to your lymphoedema practitioner, pronto, so that an assessment can take place and treatment can start.
Waiting 6 months for an appointment isn’t good enough, because the longer the symptoms are left untreated, the harder they are to manage. Request an urgent appointment with your local lymphoedema clinic or check your local lymphoedema society or network’s online directory to find a private provider (who’s waiting list may be shorter, or non-existent!).
Remember that, in the case of BCRL, it’s not just the arm that can be affected. The whole ‘upper quadrant’ is at risk of swelling including the breast, chest wall, side, arm, hand and fingers. So, pay attention to these areas as well. For more information, check out this great resource from the National Lymphoedema Network.
What should I do as soon as I notice one of these signs?
Call your doctor and lymphoedema practitioner and follow their recommendations. In the case of a suspected infection (cellulitis), you need an urgent doctor review for assessment and the prescription of antibiotics. If you have sudden onset swelling, an ultrasound may be recommended to rule out a blood clot. Once an infection or blood clot has been excluded or treated, your lymphoedema practitioner can step in and make sure you have all the tools you need to reduce or manage your symptoms.
I’ve got lymphoedema and I wear a compression garment, is there anything else that I can do at home to help ease the swelling?
Well done you, that’s a great start! Wearing compression is really fantastic at supporting a struggling lymphatic system and is absolutely essential after the completion of complete decongestive therapy (CDT). Some people wear compression only during the day, while some also include some sort of night compression into their routine. The other really important things to incorporate into your life (just like brushing your teeth!) include…
- look after your skin (to keep it silky smooth, hydrated and happy, and reduce the risk of infection)
- exercise (while anything is great, the lymphatic system loves a good swim if you have easy access to the pool or ocean!!)
- keep your weight under control
- elevate the swollen area when possible (have an ottoman under your desk at work…throw a pillow under your mattress for night elevation…pop your arm on the edge of the sofa or armrest…get creative!)
- self lymphatic drainage (SLD) (your lymphoedema practitioner can teach you)
- compression pumps are available to purchase, super effective and basically mimic manual lymphatic drainage (MLD), which would normally be performed by your lymphoedema practitioner
What sort of professional treatment is available for lymphoedema patients?
Lymphoedema practitioners often vary in their professional background and therefore may offer different treatments based on their clinic or experience. For example, I am a lymphoedema practitioner, though physiotherapist by background, so my treatments have more of a ‘hands on’ & ‘exercise’ approach. But your lymphoedema practitioner who is a nurse by background, may have a slightly different approach based on their expertise (particularly wound care). But essentially, treatment may consist of the following components –
- skin care
- diet / weight management
- manual lymphatic drainage
- compression garment measuring & prescription
- CDT (which involves all of the above, with the addition of an intensive phase of bandaging usually over a number of weeks, to get the swelling down, before fitting compression garments)
Surgical techniques may also appropriate for early BCRL, and lymphatic liposuction with long-term compression may be effective for late-stage BCRL where the above conservative treatments have failed. For more information, check out these brilliant resources from Oxford Lymphoedema Practice and the British Lymphology Society.
For how long after having lymph nodes removed, am I at risk of developing lymphoedema?
You are at risk for life, however there is some evidence to suggest that the risk is at its highest within the first few years after breast-cancer treatment.
Does the risk increase or decrease with time?
This depends on many things. For example, have you had a number of infections? Is treatment still going? Has your weight increased? This may mean that things take a while to stabilise. Or is your treatment finished? Have you lost weight? Found an exercise routine that works well for you? Settled into a good compression routine? There are lots of factors to consider when it comes to calculating risk, and the story will be different for everyone.
What are your top 5 lymphoedema myths that you’d like to put straight?
Oh gosh…there are so many…but here I go…
MYTH 1 – There are no doctors who specialise in the lymphatic system or lymphoedema.
Wrong! In the UK, we are blessed with the likes of Professor Peter Mortimer, Dr Kristiana Gordon, Dr Vaughan Keeley and Dr Andrew Hughes who specialise in lymphatic medicine. So, having your doctor refer to these legends (they seriously are, I promise) either privately or via the NHS is an excellent idea. If you have been told by your doctor that ‘you have lymphoedema, lift your arm above your head and there’s nothing you can do’ … I can assure you that this is really bad advice and there is in fact, plenty you can do. However, this all starts with a referral to a lymphatic specialist for a formal diagnosis and investigations if needed, followed by a referral to your local lymphoedema practitioner or service to get you on the right treatment track.
MYTH 2 – I can’t exercise because I have lymphoedema
Actually, you can, and you muuuuuust! Resistance and aerobic exercise is safe. Examples include yoga, Nordic walking, tai chi and swimming. However, if you are at risk of developing lymphoedema, you should consider working with your physiotherapist or lymphoedema practitioner to learn how to exercise safely based on your specific circumstances. For example, you might need to change up a few things based on your symptoms, or factor in compression garments. Want more information? Check out these great resources from the British Lymphology Society and the National Lymphoedema Network.
MYTH 3 – Compression garments are ugly and make me look like my nana
Well, maybe I’m a bit bias here because I’m all for tonal fashion…. but compression garments are super amazing! They’re like a hug for your swollen body part and do a bloody good job at supporting your lymphatic system so that the fluid doesn’t set up camp, turn into fat, and be stuck there forever. They also come in tonnes of colours and I honestly think they’re the most genius things ever.
MYTH 4 – An NHS lymphoedema service doesn’t exist in my area so there’s nothing I can do
Wrong! Speak to your GP and get referred to the next closest service! Or, if it’s wait list is months long, check out a private clinic. Then, the next thing you can do is write to your local parliament member and tell them about what lymphoedema means for you and how important developing lymphoedema services in your area is! Fancy people who develop health services can’t develop things they don’t know are missing….so guess who’s job it is to tell them? OURS!!! YAYYY!!! Put your advocacy pants on team!!! You’re a part of history!!!! Can’t find your closest lymphoedema clinic? Check out this UK directory Here.
MYTH 5 – Pain and reduced shoulder movement after breast cancer surgery is normal
No, it’s not. Your shoulder should move as it did before surgery, and if it’s not, you need a physiotherapy referral. Hopefully you were able to see a physiotherapist before or after your surgery, for a baseline assessment and exercises to complete to regain your movement and strength. If you weren’t, it’s never too late to seek that referral from your doctor (or refer yourself if going privately) and get that shoulder moving again. Sometimes, chronic pain after breast cancer surgery is a thing, so onward referral to a pain clinic may also be helpful to see whether something else might be going on. For example, there’s a brilliant pain clinic at The Royal Marsden working magic and a referral to these clinics can usually be done through your doctor.
MYTH 6 (yup, I snuck an extra one in here…) – I am the only one in my community with lymphoedema
Nope, I can almost guarantee that you are not. A celebrity recently referred to social media as the ‘toilet of the internet’ (bless) but it really is a great way to link up with other lymphies and see where they’re getting treatment, what’s working for them and overall realise that there are tonnes of people out there living their best life with lymphoedema (blokes too!)…and maybe social media will help you realise that you can too.
Want more information? There are some great resources out there…. why not check them out?
- Let’s Talk Lymphoedema (the best book out there…ask Santa for Christmas!)
- British Lymphology Society (or your local lymphoedema network or society if outside the UK)
- Lymphoedema Support Network (also lots of resources available on their YouTube channel)
- Oxford Lymphoedema Practice (for all things surgery)
- National Lymphoedema Network Position Papers (I refer to these every single day…print them all and stick them on your fridge for easy reference!)
- LE&RN (amazing webinars & symposiums)
- Social media – Twitter, Insta, Facebook (start with @britishlymph, @lymphielife and maybe @ladylymphoedema (ah-hem) and go from there!!)
- The Ticking Off Breast Cancer page on lymphoedema has additional links to other resources.
Updated Feb 2021
The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.