L-W-O Community supports primary and secondary lymphoedema by promoting emotional wellness, lymphatic health, self-care, patient empowerment, online and in the community.
Breast Cancer Related Lymphoedema (BCRL)
After treatment for breast cancer one in five women (20%) will go on to develop lymphoedema which is a side effect of some breast cancer treatments. You may notice that your arm, breast, chest, hands, fingers, shoulder, or the area behind your armpit may start to swell. In my case it was my boob, which became rock hard and was beetroot red. My diagnosis was breast and posterior chest wall lymphoedema. Please understand that not everyone will experience the same symptoms therefore, it is essential you check yourself for any unusual swelling and report this to your breast care team. Not everyone who has breast cancer will develop lymphoedema.
Lymphoedema is caused by a build-up of fluid in the body’s tissues
Cancer related lymphoedema is known as secondary lymphoedema and is a failure of the lymphatic system that develops because of damage to a normally functioning system. Surgery and Radiotherapy can cause damage to the lymphatic system, lymph nodes and the surrounding affected area, but any damage only affects the side that has been treated.
Lymphoedema is a lifelong condition and therefore our focus is on supported management and treatment through a lymphoedema practitioner. However, lymphoedema does require those of us who live with this condition to treat and selfcare for ourselves on a daily basis. To manage your lymphoedema check out our Cancer Related Lymphoedema page more information.
For organisations, services and therapists check out our links page
If you develop breast cancer related lymphoedema insist you are referred to a specialist lymphoedema service.
Symptoms of Breast Cancer Related Lymphoedema
I cannot emphasise enough how important it is for you to contact your breast care team if you begin to develop any of the following symptoms. The earlier you are diagnosed with lymphoedema the sooner treatment can begin.
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Swelling
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Arm stiffness
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Discomfort maybe pins and needles, tingling
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Skin Changes (peau d'orange or orange peel skin)
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Dry skin, check for breaks in the skin
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Hardness or firmness (which may be fibrosis)
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Tightness
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Less mobility in your arm
You will see in many articles that lymphoedema does not cause pain and that it only causes mild discomfort, however, many of our members will tell you it is painful and I think that many of our healthcare professionals are now beginning to accept this from their patients.
We are all different, not all of us will experience the same symptoms.
Recognise the changes in swelling & reduce risk
Recognise the different changes in swelling and reduce your risk of lymphoedema, or if you have been diagnosed with lymphoedema prevent your condition from progressing.
Report any unusual swelling to your breast care team or lymphoedema specialist.
Ask yourself the following questions:
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Has my skin changed?
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Has my bra become too tight?
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Are my rings or jewellery tighter than normal?
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Is my swelling worse at the end of day?
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Is it worse after strenuous activity or exercise?
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Is it worse in the hot weather?
The clothes and jewellery you wear including your underwear should not leave indentations.
Underwear that is normally well fitting might feel tighter in summer if your body swells from the heat.
Recognising Infection
For those of us that have lymphoedema we need to protect ourselves from inflammation and whilst this will seem like common sense to most of us, I have spoken to people who were never told about the risks of cellulitis.
If you are diagnosed with cellulitis you need to seek help immediately. You will require two weeks of antibiotics and in severe infections you may need intravenous antibiotics. Speak to your GP if recurrent episodes of cellulitis (2 or more infections in one year) because you may need to keep emergency antibiotics at home.
The infection may enter via a break in the skin, such as a scratch or insect bite or through an existing wound or ulcer, or through an area of skin inflammation, e.g., athletes' foot, eczema or dermatitis. However, it may not be possible to identify the cause and an attack may arise without warning.
The swollen area usually develops a rash or becomes red, hot, and tender to touch. Swelling may dramatically increase, and pain may occur in the swollen area, of the arm pit, arm, or hand.
Please remember that not everyone who lives with lymphoedema will develop cellulitis and at this time, we do not know why. On a poll that our support group did the split was 51% developed cellulitis and 49% did not. I am one of the 49% who have not had cellulitis which is great considering I have lived with lymphoedema for ten plus years.
These are the symptoms to look out for:
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start to feel unwell. as if flu is starting
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elevated temperature
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fever
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shivers
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muscular aches and pains
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headache, nausea
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vomiting
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acute spreading inflammation of the skin
Reducing and Treating Infection
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wash hands regularly
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keep your skin clean
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keep nails short and filed (try not to scratch)
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moisturize your skin daily to prevent skin drying/cracking
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prevent cuts and grazes by wearing gloves when doing DIY or gardening
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keep arms and legs covered when doing DIY or gardening
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protect your arms and legs from pets biting or scratching
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cuts, bites, grazes keep clean, wash gently under running water, gently pat dry and cover with plaster or dressing
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keep first aid kit where you can find it quickly
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carry alcohol wipes in your bag or car for when you are not at home
If you have had cellulitis, then it is highly likely that you will get it again. Unfortunately, it is not always possible to prevent it from coming back. Therefore, you need to take your own preventative measures.
Please remember athlete's foot, eczema and leg ulcers can increase your risk of cellulitis so if you have any of these conditions please talk to your GP. Unfortunately, if you carry extra weight, you can increase your risk of cellulitis, so weight control is important.
Speak to your GP if your cellulitis comes back or is not healing as your GP will have the option to refer you to a dermatologist, or skin infection consultant. You can then discuss whether there is an option to take antibiotics on a long-term basis to protect from further infections.
You will find further information here
Wearing your compression may reduce the incidences of infection
#GetMoving
I know when you are first diagnosed that you may find it difficult to treat your arm as normal, you may feel overprotective of your arm, which is natural. However, it is important after breast surgery and any subsequent treatments that you return to normal activities when you feel able.
Ask your Breast Cancer Nurse (BCN) or lymphoedema practitioners for advice and report anything that you feel isn't normal.
You do not need to limit your exercise. Regular arm movement can help, and whenever you can, return to your regular sporting activities. Start off cautiously until you feel comfortable or have regained your strength.
Do some warm-up exercises before you begin. Stop to drink some water, stay hydrated, and don't forget to complete some cool-down exercises.
Only do as much as you feel able to do, better to build a routine slowly until you are comfortable with what you are doing. For more ideas on arm and hand movements look here...
Until you build your strength back avoid carry heavy shopping, parcels and avoid moving heavy furniture.
For more ideas on how to improve your lymphatic health check out our #getmoving page
Positioning a Limb
Whether you are sitting down or lying down you are looking to position yourself in way that helps the lymph fluid to drain. Positioning often known as elevation will help to reduce your swelling. With arm lymphoedema place your arm on a cushion or a pillow, be sure that you are comfortable and do not feel any strain. Your arm should not be above shoulder height.
Do not leave your arm in one position for too long, ideally you should shift your position every 30 minutes.
Cording or Axillary Web Syndrome (AWS)
Unfortunately, some people experience cording after surgery for breast cancer, these cord-like structures are under the skin of the inner arm, and this happens when lymph nodes are removed from the area under the arm. Find further information, reading and support here...
Selfcare
In an ideal world in the UK, you should, be supported by the NHS for all your lymphoedema needs including treatment, compression and if needed mental health support. Sadly, not always the case therefore, learning to take care of yourself will be a become part of your lymphoedema management. L-W-O Community is here for you, come and join our friendly support group and talk to people who understand what you are going through. Or join the forum on this website.
Negative Body Issues
Whether you have had a mastectomy or breast conserving surgery the body issues that you may experience will have a profound effect on how you learn to live with your breast cancer and subsequently your lymphoedema.
The physical changes to our bodies for those of us that live with BCRL do have a traumatic effect on the way we view ourselves. While to family, friends, the public in general, our outward appearance may look normal we know physically underneath our clothes our body shape has changed. Therefore, physically, and mentally our outlook and the way we view ourselves changes.
Do ask for help speak to your BCN, Lymphoedema Nurse/Therapist and seek help from the professional organisations ask about talking therapies find further information here …
Finances
The financial impact of being diagnosed with cancer and lymphoedema can be huge. If you are working there will always be the fear of losing your job however if you have a cancer diagnosis then, UK law considers this to be a disability. This is the information on the Macmillan website:
"If you have cancer the law considers this a disability. This means you cannot be treated less favourably than other people (who do not have cancer) because you have cancer, or for reasons connected to the cancer. That would be discrimination".
Do check out your rights here...
Myth Busting
There is no evidence that flying, whether short or long distances, increases the incidence of lymphoedema. There is no valid reason not to fly if lymphoedema has been diagnosed. If compression has been prescribed, wear it.
However, when flying, do take the following common-sense precautions:
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Do wear regular flight socks to prevent blood clots.
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Keep moving your limbs as much as you are able during the flight – particularly the ‘at risk’ limb.
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Wear loose fitting clothes, shoes, and jewellery to travel in.
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Keep well hydrated during and after the flight (water, not alcohol!).
Source: Lymphoedema Support Network
My personal advice would be:
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Pre-book seats
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If there are any open seats you can switch to for additional space to spread out, inquire at check-in
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Pay for lounge access, far more relaxing
For further details on travel, check out Lymphoedema Travel
Page first published October 2021
Last updated October 2023