Lymphedema is a common and sometimes underestimated problem that affects many women after breast cancer. This problem may however impact everyday life and the quality of life of the persons affected.
What is Lymphedema, how does it develop as a result of breast cancer, what are the symptoms, what are the risk factors, and what are the options in order to reduce the risk of Lymphedema and Lymphedema flare-ups, or how to treat Lymphedema itself or alleviate the symptoms?
In this article you can learn more about all these aspects.
What is Lymphedema?
Lymphatic vessels run alongside the blood vessels. Their function is to create defences against intruders (for example, cancer), to ensure the drainage of waste and the transport of fat. Substances that do not belong in the body tissues are absorbed by the lymphatic system and drained: proteins, water, foreign substances that have invaded the body tissues, such as bacteria, inflammatory cells and malignant cells.
The lymph fluid is collected in a lymphatic vessel and drained through large collectors until it finally enters into the bloodstream. Along the way, the lymph fluid also passes some lymph nodes. These are there for our defence. If germs are discovered in the lymph fluid the lymph nodes react and create antibodies to protect our body.
Swelling may occur because the absorption of the lymph fluid is disturbed. But also because the transport is disturbed or because there is a sudden large production of lymph fluid. All these factors may occur separately or together. It is about a disturbed balance between the production and the drainage of lymph fluid.
Lymphedema is a chronic condition that is often progressive and starts mostly insidiously. At an advanced stage the disease may result in a severe loss of quality of life. Often the condition is not recognized or (too) late. The earlier it is recognized, the earlier an intervention can be made and the less severe the consequences will be.
We speak of Lymphedema at a volume difference of 5% compared to the unaffected side.
What causes Lymphedema following breast cancer
If Lymphedema develops in persons being treated for breast cancer, this is usually the result of the removal of lymph nodes or a result of radiation therapy of the chest and/or the underarm. Surgery or radiation therapy can cause damage to the lymph nodes or lymph vessels through which the lymph fluid moves. Over time, the flow of lymph fluid can overwhelm the lymphatic system, resulting in a backup of fluid into the body’s tissues.
If Lymphedema develops following breast cancer, it mainly occurs in the arm and hand of the treated side, although sometimes it can also occur in the underarm, chest, trunk or back.
Since the focus at the time of diagnosis is often on the recovery of the patient and the treatment of the breast cancer itself, the risk of Lymphedema is often not indicated at that time, or the patient may not always remember because of the overwhelming impact of the diagnosis of breast cancer itself. Sometimes the patient also obtains conflicting advice (via various sources) about prevention and treatment of lymphedema.
The fact is that there is still a lot of research to be done before we can fully understand this condition. Today, experts estimate that 20 to 30% of patients develop lymphedema after breast cancer surgery and/or radiation therapy.
Although it is not possible to know with full certainty whether or not you will develop Lymphedema after breast cancer, you can learn what the risk factors are, take steps to reduce this risk and to recognize symptoms in its early stages making treatment easier. The good news is that women can learn how to manage Lymphedema and can lead normal lives.
What are the symptoms
As with breast cancer, early detection of lymphedema can greatly reduce its effects. Early detection is often challenging though because the first symptoms are often subtle. Even before actual swelling occurs, patients may feel unusual sensations (sensory changes) in the limbs, like a tired or heavy feeling, pain, tingling, and restrictions in movement or skin disorders. Also, the fact that clothing feels tighter or that jewellery, such as a ring or a bracelet, are hard to get on and off, can be an indication that some swelling has occurred that visually is not always clearly detectable.
Hence it is always good to consult a doctor if any of these symptoms occur, even if these symptoms go away on their own or occur only periodically.
The diagnosis can be made on the basis of a questionnaire that asks about prior surgeries, treatments, life style, general functioning, by physical examination with palpation and volume measurement of the limb or by lymphoscintigraphy, an examination with radioactive contrast fluid to determine the degree of lymphedema.
If you have had surgery to the lymph nodes (removal of one or more lymph nodes) or radiation therapy, you are considered to be at some risk of developing lymphedema. How high the risk is, depends on a number of factors and cannot be determined with certainty. Even someone with a 'low' risk at first sight can still develop lymphedema.
Research suggests that there is a certain association between the number of lymph nodes removed and the risk of developing Lymphedema, and in particular that this risk increases with the number of lymph nodes taken out. This would also be the case as a larger area of the chest or underarm is treated with radiation.
As for breast reconstruction, recent studies have not shown a connection between breast reconstruction itself and the risk of lymphedema. A breast reconstruction in itself would not increase the risk of lymphedema; however it is true that every time there is an inflammatory reaction, which may occur with any type of surgery, there is a risk that fluid builds up and leads to Lymphedema (see below).
In addition, people who are overweight or obese are more likely to develop lymphedema after treatment for breast cancer. The pump function of the muscles supports the drainage of the lymph fluid. When one moves, this drainage is stimulated. People who are overweight typically move less and hence the muscle pump works less as a consequence. In addition, the accumulation of fat tissue results in compression on the lymph vessels whereby the lymphatic transport can become disrupted.
Also, an infection or injury to the arm, hand or the upper body on the side of the body where the treatment for breast cancer has occurred, can lead to inflammation of the body’s tissue, increasing the blood flow to those areas and, therefore, also the fluid load. If the lymphatic system is affected and not handle the volume of fluid, Lymphedema can arise.
Often the question arises whether airplane travel increases risk of lymphedema as a result of air pressure differences. There are differing opinions in this regard, but it is true however that certain limbs, including mainly the arms and legs, can tend to swell because of the long flight and lack of movement, as a result of which it may be appropriate to wear a compression sleeve or stocking if you have certain risk factors. Always consult with your treating physician in this regard.
What can you do to prevent?
First of all it is important to measure the circumference (distance around) both arms before and after surgery, and at regular intervals after treatment. Although Lymphedema can affect other parts of the body, it is more common in the arm and hand on the same side as the breast cancer. Ask your physical therapist or nurse how you can do this the best way. One takes as a rule for Lymphedema a 5% increase in size.
Movement is also very important. Movement stimulates the drainage of lymph fluid. However, sustained heavy exercise should be avoided. Hence it is recommended to follow an individualized program of gradually increasing exercise in which the effort is gradually intensified and the arms and upper body are strengthened. Also hiking, swimming and yoga are recommended.
It is also recommended that you protect the skin from all kinds of influences, such as small skin cracks due to cold, insect bites, splinters, or more severe injuries, which all can lead to bacteria in the body’s tissues. The first signs of infection include redness, swelling, warmth in the area and a local throbbing sensation. In case of injury it is advisable to thoroughly disinfect the wound and cover it with a bandage. A neutral body lotion or hand cream can also be used to moisturize the skin. A sunscreen with high protection is also recommended in order to avoid blisters due to sun burn. Note that soap-free products are preferred. Soap dries out the skin and hence increases the chance of small cracks in the skin.
Extreme temperatures should also be avoided. Extreme heat and cold increases the blood flow, and therefore also the lymph production. Hot water tubs or showers, infrared cabins, bright sunshine and sauna should be avoided.
Being overweight is a risk factor for lymphedema, as already indicated. If necessary, a diet program can be helpful under the guidance of a nutritionist.
It is important to underline that lymphedema is a chronic condition. It can be treated but not cured. The focus of treatment will therefore be on reducing lymphedema and its effects. At one end of the spectrum are patients who experience milder symptoms that occasionally flare up and only require periodic treatment; at the other end are patients with more severe and persistent symptoms that require permanent treatment. During the consultation your doctor will work with you to find the most efficient way of treating. Clinically, two forms of lymphedema can be identified: ' pitting ' edema (edema that can still be pitt) and ' non-pitting edema ' (that can no longer be pitt). Depending on the type of lymphedema treatment is different. Treating 'pitting' edema consists of a deswelling phase and maintenance phase, whereas with ' non-pitting ' edema deswelling is no longer possible.
During the deswelling phase treatment mainly consists of skin care, bandaging, exercises, manual lymph drainage and the further taking into account of preventive actions as indicated. This deswelling phase takes as long as volume reduction is still possible.
The maintenance phase is intended to keep the lymphedema stable. The maintenance phase often lasts for a life time. Often, the treatment consists of wearing a therapeutic compression sleeve and exercises, in addition to skin care, preventive measures and manual lymph drainage.
In addition to this, a number of operative interventions may be possible, such as reconstructive operations (Lympho-venous shunt and lymph node transplant) and liposuction that can lead to a certain recovery or improvement of the lymphatic circulation. The treating physician can provide more information in this regard.
The Beautiful After Breast Cancer Foundation organizes regularly info-sessions (in Dutch) about Lymphedema in which all these aspects are reviewed and additional questions can be asked, this not only for breast cancer patients but for all patients suffering from lymphedema.
For information and registration please click here