Stages of lymphedema
There are four primary stages of lymphedema that each impact the body in different ways. They are categorized according to severity and run from subclinical to severe. Work with your physician and therapist to determine your stage of lymphedema. Together, you will build a plan that is right for you.
LATENCY OR SUBCLINICAL STAGE:
Stage 0 is a subclinical stage where swelling is not visible to the eye or even measurements. Protein will start to accumulate and cause small changes. You may sometimes feel a sense of heaviness in the area. This stage may exist for months or years before edema becomes evident. It is important to monitor the at-risk area so that you can start treatment as soon as possible if you notice any changes. Early treatment can make the management of your symptoms easier.
With stage 1 there is an early collection of high protein fluid. You may notice that your hands or feet look puffy and that elevating your limb will help the swelling go away. The edema may leave an impression when you push on the skin, which is called pitting edema.
With stage 2, you will notice that limb elevation alone rarely reduces swelling. Pitting may or may not occur as tissue fibrosis develops.
LYMPHOSTATIC ELEPHANTIASIS (SEVERE STAGE)
At stage 3, there is extensive swelling present. Tissue is hard (fibrotic) and pitting is absent. Skin changes, such as thickening, hyperpigmentation (change of color), increased skin folds, fat deposits, and warty overgrowths can develop.
Lymphedema is most often seen in the arms and legs, but it is possible to develop lymphedema in any part of the body.
BREAST AND CHEST WALL LYMPHEDEMA
One of the more common forms of lymphedema develops in the arm following breast cancer surgery. Because your lymphatic system is part of your body’s immune system, cancer often spreads to lymph nodes first. It is common practice for breast surgeons to include a sentinel lymph node biopsy or axillary lymph node removal while performing a mastectomy or lumpectomy. Swelling can also be noted with radiation treatments that are often implemented after surgery. Breast and chest wall edema can also occur following these surgeries and treatments.
Your breast does not have the same muscle pump that limbs have, making it harder to drain. Common symptoms include swelling of the affected breast, chest wall area right under your armpit, and your back. It might also feel hot, painful, stiff, and heavy. There are compression garments made specifically for the breast and trunk as well as small chipped foam pads that can be used to break up fibrosis and help the area drain.
HEAD AND NECK
When surgery and/or radiation are performed on certain areas of the head and neck, lymphedema can occur. If the area being treated drains lymph fluid from the head and neck, the vessels can be affected and swelling can occur. Because the only avenue of drainage from the head is through the neck, swelling is frequently a side-effect from head and neck cancer treatments.
Patients suffering from head or neck lymphedema may feel isolated and avoid social situations. Our faces are very visible and swelling here could make a person feel awkward. If you are suffering from head and neck lymphedema and feel this way, talk to your therapist and physician and make sure they know how you feel. Consider referral for counseling and try to live your live to the fullest. Know that others like you also have a similar situation.
Sometimes, lymphedema patients report that they are unaware of the swelling and only realize it when they look in a mirror.
Swelling is often seen:
› under the chin
› circumference of the neck can greatly increase
› jaw line
› in front or behind the ear
› the cheek
› the orbits of the eyes
In most cases, this lymphedema is managed daily by you. It is highly recommended that a certified lymphedema therapist instruct you on proper management techniques and garment uses. Swelling can usually be brought into control within 4-6 months1.
As with all lymphedema, the earlier the condition is treated, the better the prognosis. Patients frequently have the most swelling in the morning and see an improvement throughout the day, likely due to the influence of gravity on the head area. Sometimes patients need ongoing treatment for a long period of time, however the general outcomes are good for resolution of the swelling with proper management.
Swelling of the genitals, in both males and females, is a possible side effect of pelvic surgery, radiation, or defective lymphatic systems. Genital lymphedema is also frequently seen in primary lymphedema when the lymphatic system is damaged in the lower body. The swelling is often occurs in the area over the pubic bone for both males and females. Genital lymphedema is difficult to control with just MLD. Bandaging and compression garments are very useful to help manage these edemas. It is believed that genital lymphedema occurs at a rate of 10-20% of those who undergo pelvic surgeries and most commonly occurs within the first 5 years following surgery, but can occur any time for the remainder their life.
Because the genitals are personal and sensitive areas, swelling in this area can be a difficult discussion to have with your health care practitioner. For management of genital lymphedema, it is essential to find a CLT who understands the delicacy and complications of these edemas.
Scrotal lymphedema can be very dramatic and can easily accumulate a large amount of fluid. This type of swelling can make walking a challenge, in addition to causing isolation from friends and family. The fit of clothing is sometimes an issue. Compressive garments or bandages and MLD are necessary for management, but difficult because of the spherical nature of the scrotum.
Although more unusual, the penis can also become swollen. This type of lymphedema can lead to impotency and an inability to maintain an erection. Treatment can improve symptoms of penile lymphedema, and specialized reductive surgery has been reported in the literature as well.
Labial lymphedema is most problematic for women when sitting, as this area is often painful. This lymphedema is managed best when compression garments and self MLD are coupled together. Sometimes the edema is so severe that a leakage of fluid from this delicate tissue will require use of sanitary pads to manage.
Exercise is always important to stimulate the muscle pump to promote lymph drainage. Genital lymphedema responds well to swimming or walking in a pool to encourage drainage. Deep Breathing, yoga, and even bicycle riding is possible, but good padding on the seat is required. For labial edema, pelvic floor exercises can also assist with drainage.
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1. Brad Smith. The Head and Neck Lymphedema Program in the Department of Head and Neck Surgery at MD Anderson