Author : Rosemary Kelly
[Rosemary Kelly LLi/t, CLYL has been working with cancer patients for about a decade now, educating them about Lymphedema. Please visit her websites www.rosemarykelly.ca and www.laughing-lymphercise.com, She is based in Ontario, Canada, but is willing to work anywhere!]
What is Lymphedema?
Lymphedema is a swelling of a body part as a result of fluid accumulation due to damage to the Lymphatic system. It is a chronic, progressive, disfiguring condition that if left untreated, can lead to changes in the skin and its underlying tissues, causing deterioration and infection. Lymphedema can affect anyone: men, women or children. Lymphedema is more commonly seen in the limbs but can also occur in the face, neck, back, groin or chest wall (which may be difficult to treat if there has been breast reconstruction).
There is no cure, but it is treatable and manageable. Early stages are reversible, which means that the swelling can be brought down, but there is always a risk for progression, so it must be monitored and managed all the time.
Lymphedema is classified in two ways: Primary or Secondary. Primary Lymphedema is a condition that you are born with and it can manifest at birth or appear later during puberty, for example, or it might be triggered by pregnancy. It occurs when lymph vessels are too few, non-functioning or absent.
Secondary Lymphedema is a disruption of lymphatic flow caused by surgery, radiation (the major causes in North America) also by trauma, tumors, immobility / paralysis, obesity, chronic venous insufficiency. In tropical countries it is most often caused by infection / filariasis caused by a parasite.
In either case, when the amount of lymphatic fluid exceeds lymphatic transport capacity, protein-rich fluid collects in interstitial tissue (the tissue between the cells). Disrupted vessels create blockages and reduce lymph transport capacity.
This gives rise to pain, disfigurement, swelling, degree of loss of functionality, high risk for infection on the affected side/quadrant of the body. Subsequently, oxygen availability is reduced to the tissues. Wound healing is compromised, providing a ‘welcoming’ culture medium for bacteria, there is a risk of cycle of infection: lymphangitis / cellulitis.
This is why it is so important to avoid overloading an already weakened system by having blood drawn or blood pressure taken from the affected side. Use your unaffected side (arm) for these procedures or, in the case of a double mastectomy, you may wish to have blood drawn from your leg.
Sometimes, because of a similar sounding name, Lymphedema is confused with Lymphoma, but they are not the same. Lymphoma is a cancer of the Lymphatic System.
The Lymphedema & Cancer treatment link
How are these two linked?
In North America we are seeing the highest incidences of Secondary Lymphedema resulting as a side effect of life saving cancer treatment: risk occurs with removal of lymph nodes and increases if radiation is part of the treatment course.
Lymph nodes are small, bean-shaped, soft nodules. They cannot usually be seen or easily felt. Lymph nodes produce immune cells that help the body fight infection. They also filter the lymph fluid and remove foreign material such as bacteria and cancer cells. When bacteria are recognized in the lymph fluid, the lymph nodes produce more infection-fighting white blood cells, causing the nodes to swell. There is no specific number of nodes, it varies with every individual.
If a person has had lymph nodes removed and undergone Radiation Therapy, he or she is at lifetime risk of Lymphedema.
Some will never show signs of Lymphedema, others will experience signs and symptoms within weeks, months or years after surgery or radiation.
Lymphedema Risk Reduction Practices
The National Lymphedema Network, www.lymphnet.org is an American based organization and website that is filled with excellent information. This is their position paper on ‘Lymphedema Risk Reduction Practices’.
POSITION STATEMENT OF THE NATIONAL LYMPHEDEMA NETWORK
[By NLN Medical Advisory Committee; Approved by the NLN Board of Directors]
I. Skin Care
o Avoid trauma/injury and reduce infection risk.
o Keep extremity clean and dry.
o Apply moisturizer daily to prevent chapping/chaffing of skin.
o Attention to nail care: do not cut cuticles. Protect exposed skin with sunscreen and insect repellent.
o Use care with razors to avoid nicks and skin irritation.
o If possible, avoid punctures such as injections and blood draws. *** www.g-sleeve.com
o Wear gloves while doing activities that may cause skin injury (i.e., gardening, working with tools, using chemicals such as detergent).
o If scratches/punctures to skin occur, wash with soap and water, apply antibiotics, and observe for signs of infection (i.e. redness).
o If a rash, itching, redness, pain, increased skin temperature, fever or flu-like symptoms occur, contact your physician immediately.
II. Activity / Lifestyle
o Gradually build up the duration and intensity of any activity or exercise.
o Take frequent rest periods during activity to allow for limb recovery.
o Monitor the extremity during and after activity for any change in size, shape, tissue, texture, soreness, heaviness or firmness.
o Maintain optimal weight.
III. Avoid limb constriction
o If possible, avoid having blood pressure taken on the at risk arm. *** www.g-sleeve.com
o Wear loose fitting jewelry and clothing.
IV. Compression Garments
• Should be well-fitting.
• Support the at risk limb with a compression garment for strenuous activity (i.e. weight lifting, prolonged standing, running).
• Wear a well-fitting compression garment for air travel. (sleeve/glove(gauntlet) unit)
V. Extremes of Temperature
• Avoid exposure to extreme cold, which can be associated with rebound swelling, or chapping of skin.
• Avoid prolonged (> 15 minutes) exposure to heat, particularly hot tubs and saunas.
• Avoid immersing limb in water temperatures above 102° F.
VI. Additional practices specific to lower extremity lymphedema
• Avoid prolonged standing or sitting or crossing legs.
• Wear proper, well-fitting footwear & hosiery•
Support the at risk limb with a compression garment for strenuous activity except in patients with open wounds or with poor circulation in the at risk limb.
***You may choose to wear a Lymphedema medical alert bracelet or necklace
Please note that italics are the author’s
Lymphedema Care
Lymphedema is too often mis-diagnosed. Many doctors are unfamiliar with the lymphatic system and dismiss symptoms as “just swelling” until the condition is so severe it cannot be reversed.
Patients themselves must be their own advocates: informed, vigilant, perseverant and ready to educate fellow patients and medical professionals.
The people you might consult regarding your concerns around Lymphedema are vascular surgeons and well trained MLD (Manual Lymphatic Drainage) massage therapists.
Lymphedema prevention and management exists within Complete Decongestive Therapy (CDT) which is led by highly trained MLD therapists. There are many schools of MLD and you may have heard of the original Vodder Schule in Austria or others that followed: Norton, Upledger, Klose, Academy of Lymphatic Studies, Chikly, Casley-Smith, Földi and Leduc and others.
Though officially, Nutrition is not part of CDT, correct diet and maintaining a good PH balance will take the strain off your lymphatic system. There are distinct health advantages to consuming mainly vegetables and fruits for a huge variety of health concerns. Many people advocate a Raw Vegan diet for optimum health. You will have to do your own research and decide what is best for you and your own medical conditions. You may wish to visit this website: http://www.cancer-proofyourlife.com/
Lymphedema prevention strategies and management follow a five point plan of CDT, beginning with:
- Education
- Skin and Nail Care, because of the risk of infection as detailed in the Lymphedema Risk Reduction Practices list.
- MLD (Manual Lymphatic Drainage) - this massage technique is very effective in reducing swelling. It differs from ordinary massage as it is very gentle and encourages movement of lymph.
The aim of the massage is to stimulate or move the excess fluid away from the swollen area so that it can drain away normally. MLD massage also encourages and improves drainage in the healthy lymphatics. As this is a specialized form of massage, it should be given only by an accredited therapist who has completed a minimum of 135 hours of training. - Bandaging / Wrapping and Compression - Very simply put: in order to help reduce the swelling in an arm (for example) affected with Lymphedema, the MLD therapist will massage and then bandage the arm from the fingers all the way up, in order to assist the lymphatic system move the lymph towards the heart. Eventually, once the swelling is reduced, the patient will be fitted with a compression garment (sleeve & gauntlet for arm or stocking for leg) which should be worn every day to keep the swelling down.
- Correct remedial Exercise, Deep Breathing / Laughter - The Lymphatic system relies on muscle expansion (movement) and deep breathing to propel the lymph fluid towards the heart. The lymphatic system does not have a pump, like the heart, to move the lymph through the system, instead the lymphatic system works on inertia.
The thoracic duct, located behind the lungs, is the largest organ in the lymphatic system and is best stimulated by laughter which augments deep breathing and uses the stomach muscles to create the healthy pressure and release that moves the lymph fluid, thus strengthening your immune system.
Exercise, done soon after surgery, must balance the need for movement and gentle limited stretching with the caution of not overloading or fatiguing an already weakened system. It is important to follow an exercise program post surgery that has been modified or created specifically for the cancer patient at risk from Lymphedema. If you are planning to do Yoga, Tai Chi, Qi Gong, Zumba, anything, please inform your teacher about your medical history and ask them what they know about Lymphedema. It is important that your exercise program is modified to reduce your Lymphedema risk.
Research has shown that diaphragmatic (deep) breathing creates a negative pressure within the thorax, literally sucking lymph into the duct which is then shot out into the rest of the body at up to 15 times the normal flow of lymph. The idea is to MOVE….move your body, move your breath. Any muscular movement will stimulate the flow of lymph, but laughter augments it. Dr Michael Foldi, the world’s leading Lymphologist, based in Germany, says that the best exercise for Lymphedema patients and for those at risk, if they could only do one is deep breathing.
In India, Dr Guruprasad Aggithaya M.D. ( Ayu.) has developed a comprehensive and inspirational Lymphedema program that is enjoying wonderful results through the Institute of Applied Dermatology (IAD) http://www.indiandermatology.org/
Laughing Lymphercise (LL) and Laughter Yoga
Deceptively simple and disarmingly fun, LL is a program that focuses on Lymphedema education, prevention and management. It consists of movement set to music, done safely with chairs always used for rest and balance. Props are used for most exercises bringing an element of fun to each routine. Participants are encouraged to go at their own pace and to stay within their own Range of Motion, in order to avoid pain and injury. Laughter exercises are incorporated into the routines, based on India's own Dr Madan Kataria’s Laughter Yoga. There is no sequence to memorize, which is always a boon for anyone suffering from chemo brain. There is no anxiety if you miss a class.
The benefits of Laughing Lymphercise are :
- Ability to do safe recommended post operative exercises in a supervised milieu;
- Increase the Range of Motion of the affected limb;
- Decrease frozen shoulder;
- Stimulate your lymphatic system and
- Aid in the reduction of swelling
There is also the discovery that exercise can be fun. Since the class is often comprised of like experienced individuals, it can become an inadvertent support group. The class works at any stage of the cancer journey, from diagnosis, through treatment (after the drains are out and the incisions are healed) to years after surgery.
- Laughter is the easiest and simplest form of deep breathing!
- If there is a Laughter Yoga class in your neighborhood, join it. If not, find out how to start one! You will derive great benefit from the exercises!
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