What is it?

Lymphedema is swelling of a body part due to abnormal lymphatics (the system that fights infection and monitors inflammation in the body).  For breast cancer patients, lymphedema can occur in the arm or trunk (chest wall) following axillary (armpit) lymph node surgery. The surgery can disrupt the channels that carry lymph (the fluid responsible for fighting infection and dealing with inflammation) from the hand, arm and trunk into the bloodstream. When those channels cannot do their job, the lymph can leak out into the surrounding tissues.  Water then follows the lymph into those tissues, creating swelling.

Lymphedema may start out as a mild ache in the arm. Other people may notice that their arm feels tight or heavy. Sleeves or jewelry may fit more tightly on that affected side. Other people will experience obvious swelling in a finger, the hand or the arm. Lymphedema can also occur on the trunk, just below the armpit.

How is it diagnosed?

Many cases of lymphedema are brought to the doctor’s attention when the patient notices a change herself. Some cases are found by regular measurement of the arm size with a tape measure. Other cases are found by measuring arm tissue changes with specialized devices.  When these measurements go higher than a certain value, then the diagnosis of lymphedema is made.

How is it treated?

Lymphedema is treated with the help of a specially trained physical or occupational therapist. Often, a patient’s breast doctor makes the referral. Therapists start out with manual decompression therapy: specific techniques that encourage the tissue fluid to drive back into the bloodstream. Often, this therapy is accompanied by compression garments.

Compression sleeves or gauntlets (sleeve and glove in one) are worn for several hours a day and provide constant pressure to keep fluid out of the tissues.

Automatic compression devices can also be used. They provide more pressure than manual decompression or compression sleeves, and may be used several times a day.

Lymphedema is treated most successfully when it is found early. It is important to call your doctor if you notice aching, heaviness, swelling or tightness in the arm or hand on the side where you had surgery.

How can it be prevented?

The things that affect lymphedema are things that cannot be controlled: body mass index (BMI) at the time of surgery and the number of lymph nodes removed during the operation. Women with more body fat are more likely to develop lymphedema.  Also, lymphedema is more likely to develop with the removal of more lymph nodes. Radiation therapy to the axilla also increases the risk of lymphedema.

If you are going to engage in activities where you could get cuts on your hands or arms, you should wear long sleeves and gloves. If you have a cut or scrape, keep it clean, dry and covered until it heals.  You should use antibiotic ointment on any skin break.

If you’re going out in the sun, be sure to wear sunscreen on the affected arm and hand (you should wear sunscreen all over!).

It is important to know that if you have no cuts, scrapes or infections, having your blood pressure checked or having blood drawn in the arm on the side where you had surgery does not cause lymphedema or increase your risk of lymphedema.

If you need your blood drawn or blood pressure checked, you should ask the nurse or technician to access the arm that you feel more comfortable using.

Can I exercise?

We now know that exercising with arm weights does not cause lymphedema.  In fact, it may help treat it.  If you want to proceed with an exercise program, consult with your doctor to set a safe regimen.

Does my risk for lymphedema ever go away?

Unfortunately, if you have had axillary node surgery then you will always be at risk for lymphedema.  But the risk goes down over time.  The greatest risk is in the first five years after surgery.

More information can be found at https://www.lymphnet.org/pdfDocs/Healthy_Habits_at-Risk_LE.pdf.