Lesson 7: Breast Cancer & You - It's Not Just Physical
The emotional side effects of breast cancer
Lymphedema Alert
Lymphedema is probably the most common side effect post-breast cancer treatment. It is often ignored, misdiagnosed and continues to be an unwelcome complication for many patients.
There are two types of lymphedema, primary and secondary. Primary lymphedema (LE is the "shorthand" for lymphedema) is caused by a genetic defect, major trauma or can occur at the onset of the teen years.
Secondary LE is caused by radiation, surgery, trauma or infection. Breast cancer patients are candidates for secondary lymphedema. The removal of lymph nodes during axillary dissection, or even sentinel node biopsy, as well as the trauma of surgery to the breast tissue puts you at risk for lymphedema. Radiation can further damage the lymph nodes. The risk of infection during post-surgery treatments is another possible cause of LE.
Lymphedema is not easily recognized, either by the patient or the medical profession in general. Many women complain of a "fullness" or "tightness" in the affected arm or side of surgery/radiation, with no noticeable swelling. Surprise! LE does not occur only in the arm - it can occur in the underarm area, the upper back, the chestwall and/or the neck. Although it is normal to experience some swelling at the surgical site, this should not last. Any lasting edema, or swelling, or sensation of tightness/fullness should be reported to your doctor. Don't be afraid to mention that you think you might have lymphedema.
Lymphedema is a chronic condition which is fortunately not life-threatening, but is a royal pain. The "gold standard" for lymphedema treatment today is Complete Decongestive Therapy (CDT). This consists of manual lymphatic drainage (MLD), exercise, skin care, compression bandaging and patient education. There are specially trained therapists who are skilled in CDT - they are generally physical, occupational or massage therapists or nurses who have undergone an intensive course of over 100+ hours of training in this technique. MLD is a gentle, light touch massage which helps to open the clogged lymph pathways and redirect the flow of lymph to open lymphatic vessels. Lymph is a collection of waste fluids and proteins. The lymph nodes collect this waste and send it out of the body via the lymph vessels. When some of the vessels are lost, due to surgery, or comprised, due to radiation, this protein-rich fluid can build up, causing an uncomfortable sensation and/or swelling. Please note that LE therapy is covered under the Womens' Health and Cancer Act of 1998. Not all insurance companies cover it in the same manner. If you think you might have lymphedema, ask your surgeon/oncologist for a prescription for a lymphedema evaluation. You can find a list of competent CDT therapists in your area at http://www.lymphnet.org - this is also a great site to begin your education in this condition.
The lymphatic system is part of the body's circulation process. It is a one-way trip, however. All the waste products and fluids are carried toward the heart, away from the tissues where the waste formed. At the heart the lymph fluid joins the blood. The lymphatic vessels carry only 10% of the body's fluids. They are small capillaries between the cells. This area is known as the interstial tissue. When the fluid enters the lymph vessels it is called lymph. This is a mixture of bacteria, protein, other waste products and water.
The lymph nodes are tiny areas along the lymphatic vessels that filter the lymph fluid. There are estimated to be between 500 and 1500 lymph nodes throughout your body. Most of them are in the axilla (underarm), groin, neck and mammary glands. When the lymph fluid is cleansed, it is ready to mingle with the blood. The other important job of the lymph nodes is to create lymphocytes, which are white blood cells which help avoid or overcome infection. Think of the lymph nodes as the drains within your body's plumbing system.
The body's lymphatic system is divided into four areas, or quadrants. The area where the lymph fluid goes from one area of the body is known as the watershed. There is a vertical wateshed running up and down your body from neck to groin area, two going horizontally across your neck/upper chest and across lower abdomen/groin area and the fourth watershed on your back from head to neck.
Some lymphatic vessels cross the great divide, so to speak, but most drain lymph fluid within their own quadrant.
When lymph nodes are removed, due to surgery, or are damaged, due to radiation or trauma, it is like losing some of the drainage points in your house's plumbing system. Think of it as the drain clogging in the kitchen sink - all the gunk that gets through the drain gets trapped in the pipes and you have a sluggish sink. Your lymphatic system is similar - the lymph fluid gets trapped between the tissues, builds up to the degree where your lymphatic system can't handle the overload and that's when lymphedema can occur.
I know that doctors downplay lymphedema (LE) and many cases go undiagnosed by the medical professionals and ignored by the patient, for lack of knowledge on the subject. Lymphedema is a chronic, serious condition, that, fortunately, can be helped with the proper type of treatment. If you have had any type of breast surgery, radiation, trauma or infection, you owe it to yourself to recognize the symptoms of LE and to be your own patient advocate.
There are 4 stages recognized in lymphedema evaluation - Stage 0, where there are no visible signs of LE and perhaps only the slightest change in limb measurements. In one of the lymphedema articles I read that the lymphatic system can absorb a 30% increase in fluid volume before any edema (swelling) is noticeable. At Stage 1, also known as spontaneously reversible), the tissue is "pitting". This means you can press it with your finger and the area keeps the indentation mark. At this stage, the edema is usually better after sleeping all night and the limb/area is back to almost normal size. At Stage 2, called spontaneously irreversible, the tissue becomes sponge-like and no indentation mark remains. The tissue starts to harden, becoming fibrotic, and the area may increase in size. At Stage 4, termed lymphostatic elephantiasis, the edema, or swelling, is irreversible and the affected area is greatly increased in size. The tissue is really hard (firbrotic) and does not respond well to most standard treatments.
So what can you do?
First, I would suggest that if you are a breast cancer survivor you ask your surgeon or oncologist for a prescription for a lymphedema evaluation. If you are not that concerned, take your own rough measurements of your arms for a baseline. (Use a snug, but not overly tight tape measure) and measure around your middle finger, wrist, forearm, elbow, bicep and under armpit/shoulder. Do this on both arms. File it away in a safe place and if you ever have to go for an LE evaluation, you will at least have a few personal measurements to bring with you.
Second, learn the "do's and don'ts" of how to avoid lymphedema.
Third, if you think you might have LE, don't despair - find a good LE therapist, do some reading, join a support group and learn to control this condition.
Lymphedema is not fun, but it can usually be managed. Educate yourself and help spread the word about this condition. Knowledge is the key for both the patient and medical staff.
For more information, check out http://www.lymphnet.org and http://www.lymphaware.org and http://www.lymphaticresearch.org
The National Lymphedema Network has worked diligently for the past 10 years to educate the public and medical community about the perils of lymphedema. Here, courtesy of their web site, are the 18 precautionary steps for those who may be at risk for lymphedema and as preventive measures for those patients who have lymphedema.
*1) Never ignore swelling in the arm, hand, fingers, chest wall, foot, toes, ankles, leg, abdomen or genitals - Consult a doctor immediately.
*2) Never allow an injection or blood drawing in the affected limb(s). Wear a Lymphedema Alert bracelet, necklace or some type of warning symbol.
*3) Have blood pressure checked on the unaffected arm, or leg if both arms are at risk.
*4) Keep the limb spotlessly clean. Use lotion after bathing and dry gently. Make sure to dry any creases.
*5) Avoid vigorous, repetitive motion.
*6) Avoid heavy lifting. Never carry heavy items on affected side.
*7) Do not wear tight jewelry or any socks, stockings, clothing with tight elastic bands.
*8) Avoid extreme temperature changes when bathing or sunbathing. Use sunscreen.
*9) Try to avoid any traums (bruises, cuts, sunburns, insect bites, cat scratches) on the affected area. Check for signs of infection.
*10) Wear gloves when doing housework, gardening or any activity which may result in minor injury.
*11) When manicuring, avoid cutting cuticles. Notify your manicurist. (Applies to pedicures also)
*12) Exercise, but do not lift more than 15 lbs. Don't overtire the limb at risk. If it aches, lie down and elevate it. Consult with your therapist before beginning any new exercise regime.
*13) When traveling by air, wear a well-fitting compression garment. Additional bandages might be required for long flights. Increase fluid intake while in the air.
*14) Patients with upper limb edema should wear light-weight breast prostheses. Soft padded shoulder straps are advisable. Choose a well-fitted bra, preferably with no underwires.
*15) Use an well-maintained electric razor.
*16) Patients with lymphedema should wear a well-fitted compression garment during waking hours. Follow up with your therapist every 4-6 months. If the garment becomes too loose, it loses its therapeutic value.
*17) If you notice a rash, itching, redness, pain, temperature increase or fever, see your doctor immediately. Inflammation or infection in the affected area can worsen lymphedema.
*18) Maintain your ideal weight and eat a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcohol. Even though lymphedema is a high protein edema, eating too little protein may weaken the connective tissue and worsen the condition. The diet should contain easily digested protein such as chicken, fish or tofu.
Additional information for lower limb lymphedema: Always wear closed shoes. Dry feet carefully after swimming. See a podiatrist annually as prophylaxis. Use talcum power on feet, especially if you perspire a lot. Rubber gloves will help you put on compressiong stockings more easily. Power behind the knee may also help.
These sensible precautions may not help you avoid lymphedema entirely, but will prepare you to be an informed patient.
