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Financial Assistance for Compression Garments
8th NLN Conference, August 27-31, 2008, San Diego CA
Groundbreaking Medicare Decision:
Compression Garments are Prosthetic Devices!
New Book: 4th ed, Lymphedema: Diagnosis and Therapy, H. Weissleder
For Professionals: NLN Research Survey
Updated NLN Online Patient Questionnaire
NLN Position Papers: Risk Reduction, Treatment, Exercise, Air Travel, Training
Seeking Patients: Breast Cancer Survivor Studies
LymphLink July-September 1998, Volume 10, No. 3
To be told by your doctor that you have breast cancer and need surgery right away is extremely traumatic. But, even more challenging is uncovering all of the do's and don'ts to follow before, during and after your surgery - before your arm starts to swell and you may be told that nothing can be done for you and that you just have to live with it. It is very likely that lymphedema possibly can be avoided if certain precautions are taken.
As Executive Director of the NLN , a full-time practitioner and avid patient advocate, every day I am immersed in the struggles and frustrations of both patients and health care professionals. Despite growing awareness in the United States about lymphedema, calls to the National Lymphedema Network information and direct-dial lines increase dramatically every day calls from frustrated lymphedema patients and, more often, from concerned women recently diagnosed with breast cancer. These women are doing their homework prior to surgery, trying to learn as much as they can about lymphedema and other complications in order to make an educated decision about such issues as type of surgery (lumpectomy, modified radical mastectomy, simple mastectomy), or treatment options available to them before they have the surgery.
However, this article has been written for those of you who already have had surgery and treatment with or without reconstruction and/or radiation therapy, or subsequent lymphedema and those of you who will be undergoing surgery in the near future. It will prepare you by providing suggested guidelines to use before and during surgery, as well as during the immediate, post-operative period and weeks and months later, emphasizing the importance of the lymphatic system and avoiding lymphedema.
Over the last decade, millions of dollars have been raised for research in the prevention and treatment of breast cancer in the United States, but minimal attention has been given to the often devastating side effect: lymphedema. A number of doctors continue to tell their patients that, until it has been scientifically proven, they will not support any guidelines regarding avoiding injections, intravenous administration, blood draws, or blood pressures in the affected limb. True, we can not predict why some patients develop lymphedema and others do not. And, until the funds have been raised and studies completed, we, as health care providers, owe it to our patients to provide them with all the information and support currently available.
Many studies on such topics as the extent of surgical dissection1,2,3,4 and radiation to the axilla show a high incidence of lymphedema1,4,5. In two separate studies, one indicated that age is a factor, while the other found it unrelated1,6. Several studies have described obesity or weight gain after treatment for breast cancer as risk factors3,7. One study did report a greater incidence of lymphedema in dominant hands2. Some institutions now do preliminary diagnostic tests such as lymphangioscintigraphy (LAS) or magnetic resonance imaging (MRI) prior to surgery. LAS provides superb func-tional images and allows us to visualize the pathways of the lymphatic system. MRI shows lymphatic vessels within soft tissue, as well as enlarged lymph nodes. It is possible that the patients who develop lymphedema immediately post-operatively may already have a compromised lymphatic system. Other factors which I have observed over the years that are associated with early onset of lymphedema include persistent post-operative drainage that lasts for several weeks and a tendency to swell throughout the body after increased salt, alcohol intake, or high temperatures (hot tub or sauna).
Create a good rapport with your medical team. If you are part of an HMO, it especially is important to have a good working relationship with your primary care physician, your team leader. A diagnosis of breast cancer has an emotionally powerful impact, so making important decisions can be difficult during this time. It is important that you feel comfortable with the choices made (and understand all implications), including type of surgery, where it will be done, who will be doing it, and whether or not you will opt for reconstruction at the same time. Is your doctor aware of your concern about the possible development of lymphedema and how does he or she address this issue?
Try to resist the sense of urgency that often comes with a cancer diagnosis. Your decisions will have important consequences and it is crucial to be fully informed. You do have the time to consult with another doctor for a second opinion (be sure to collect all of your medical records beforehand) and, as a matter of fact, your doctor might encourage you to do this. Some insurance companies reimburse for second opinions. Today there are many options, such as chemotherapy to shrink the tumor before surgery, and lymphatic mapping prior to surgery in order to determine if the sentinel node (the most superficial lymph node in the armpit which is closest to your skin) is malignant. If benign, in many patient cases, further sampling of lymph nodes can be omitted, most likely avoiding the development of lymphedema (although long-term clinical study results have yet to be reported). Of course, age, size, location of the tumor and other medical problems all have an impact on the final decisions. Be sure to discuss all of this with your family, partner, or close friends, and really understand all the options in order to feel as comfortable as possible with your decision. Too many times we hear patients say after the fact that, "if I had only known this before, I sure would have done it differently."
Make sure you measure both of your arms in specific areas before surgery as a baseline measurement (make a note of exactly where you took the measurements) and continue to keep close track of this as you go along. In addition, your doctor will order all of the appropriate pre-op work, including laboratory work-ups (do not allow blood to be drawn from the affected side, even before surgery). Confirm that your doctor is aware of any other medical problems, such as cardiac or pulmonary disease, diabetes, epilepsy, or other pertinent medical problems including skin disorders or allergies to medication. Since pain medications, such as Tylenol with codeine, mor-phine, vicodin and others, can cause constipation, drink at least eight glasses of water before midnight the night before your surgery. Recommended vitamins to help support your immune system (if tolerated) include 3000 mg of Vitamin C taken for two weeks prior to surgery, which helps to expedite the healing process and prevent ecchymoses. Avoid Vitamin E and aspirin, since these can cause bleeding.
IMPORTANT: Ideally, see a certified lymphedema therapist who can educate you in all the do's and don'ts, including the "18 Steps to Risk Reduction," an NLN information sheet and, if possible, have a few sessions of manual lymphatic drainage to stimulate the lymphatic flow. You should be educated in self-manual lymph drainage now slowly being introduced to physicians and continue this on a daily basis to increase your odds of avoiding lymphedema and to keep yourself in optimum condition. Some lymphedema centers now provide education in self-care and some insurance companies are beginning to cover this, as well.
Many patients undergo what is referred to as "same day" lumpectomies/mastectomies; it is important to be prepared at home beforehand. Make sure you have a relative or friend with you the first night since anesthesia can create immediate or later complications such as nausea or hypotension. Stock up on plenty of light foods such as broth, soup, juices and soft foods. Have a comfortable bed ready with plenty of pillows to support your arm and back, and to provide you with general comfort. Telephone numbers for your doctors and friends should be available and easily accessible in case of questions or emergency.
Wear a pink "LYMPHEDEMA ALERT " band on the side of your surgery. Post a sign above your bed that announces boldly and clearly, "No blood pressure or injections to be given in (left/right) arm." Make sure you communicate with the anesthesiologist before you have been pre-medicated. Tell her/him not to use your arm on the side of the surgery to start the intravenous or to take blood pressures. Also discuss your concerns with the anesthesiologist and the surgeon regarding being extra careful with that arm, both while you are asleep in the operating room and when moving you to the hard operating table. Patients who already have lymphedema in one arm from prior surgery should pay extra close attention to these recommendations.
One particular action you may want to consider is drafting a specific agreement form for your surgeon to sign indicating that only he or she whom you have assigned, who knows you and who has agreed to be your surgeon, will perform the actual surgery - not any other physician or resident. Though seldom discussed, "ghost surgery," according to standards published by the Judicial Council of the American Medical Association, is a situation that results, "when a patient is not informed as to the identity of the operating surgeon"; more specifically, this applies to situations where the patient has signed a consent form with his/her primary surgeon, but the actual surgery is performed by another surgeon or an intern without the patient's knowledge or consent. Understanding the concept of "Ghost Surgery" and talking this over with your surgeon may be helpful.
Most patients are quite sore after surgery and have difficulty lifting their arm; the axillary node dissection can cause muscle tightness and soreness around the shoulder. It is important during the first 24 hours to support the arm and surrounding area; afterward, use the arm as can be tolerated, but avoid active stretching or pulling until the drains have been removed and you get your doctor's approval.
While in the hospital, there will be a nurse or nurse's aid watching you and taking routine blood pressures. Make sure that all nurses are carefully instructed NOT to take blood pressures or give injections on the affected side (keep your pink LYMPHEDEMA ALERT band on). Your doctor will evaluate axilla and mastectomy sites. It is important that you go home with detailed instructions and make sure you are aware of signs and symptoms of infection; these include sudden onset of increased warmth, discoloration, pain and swelling around the incision. Sudden discoloration may indicate a hematoma (collection of blood beneath the skin).
You also should be carefully instructed in how to care for the Jackson-Pratt drain. Sometimes, there will be two: one below the axilla (armpit) and one in the chest area. Empty these when needed and record color and amount of fluid in cc's. Be sure that the drain is not tugging on the skin and cannot be accidentally dislodged. Some patients continue to drain for several weeks. If the drain is pulled out too early, a seroma can develop, usually in the armpit or around the mastectomy or breast incision.
A seroma is a pocket of fluid consisting of serous fluid combined with lymph. It often feels like a golf ball in the armpit and can be quite uncomfortable. Usually, the surgeon will ask the patient to come in to aspirate the fluid. This can vary from one visit to several visits and could, in rare cases, possibly lead to a localized infection.
You can also expect some immediate swelling in the upper arm post-operatively. This is not uncommon and does not mean you have lymphedema. Since you should have your pre-operative baseline measurements, measure your arm once a week; if you note dramatic changes, see your doctor. You may experience numbness and some prickling sensa-tions in the upper inner arm and armpit area. This is quite common. Numbness will usually improve over months or years, but in some patients, it will persist. Be careful when shaving, even if using an electric razor. Some patients will lose their armpit hair permanently. Also, since the incision is new and stitches are in place, do not use deodorant on that side for several days and be careful not to rub too hard when drying off after a shower.
For years, some European surgeons have been ordering a compression sleeve that is worn immediately post-operatively as a prophylactic measure. American doctors are just beginning to experiment with this strategy.
In addition, to protect your at-risk arm, a silver metal LYMPHEDEMA ALERT bracelet recently was introduced to caution physicians and lab technicians not to use the arm for blood pressures or venapunctures. It is recommended that the bracelet be worn at all times by both people with and without lymphedema who have undergone axillary lymph node dissection.
As far as we know, chemotherapy does not cause lym-phe-dema, but patients who have poor veins or who will need IV chemotherapy may develop venous damage. Sometimes, a porta-catheter may be inserted to make it easier to administer the chemotherapy and to take blood samples. The device is surgically implanted under the skin, usually in the chest area below the collarbone, and, again, this needs to be put opposite the affected side to avoid lymphedema. Depending upon the situation, the catheter may not be used for several weeks, or may be left for future treatment. It is important to keep a close watch on the surrounding area, noting any swelling (congestion) or prominent vascularity.
Another device used for easier administration of chemo-therapy is the PICC line - tiny tubing usually inserted into a vein through the skin of the forearm in the elbow area. PICC lines are left in place throughout the course of chemotherapy and help to minimize the number of punc-tures. Patients do need to be cautious with PICC lines, however, and be careful not to accidentally break the tubing. There have been case reports of patients who develop lym-phedema in the non-affected arm due to the repeated administration of chemotherapy into the same vein, so varying the veins used for this procedure may be helpful.
The patient who has had axillary lymph-node dissection and will require radiation treatment to the axilla, chest wall, or collarbone region is at a higher risk for developing lymphedema caused by the development of scar tissue3,9,10. IMPORTANT: Note any skin irritation or redness similar to sunburn during and after radiation treatment. Do not rub or scratch the affected area if at all possible; use mild soap, being careful not to wash over port markings. Do not use any soaps, lotions, deodorants, medicines, perfumes, cosmetics, or talcum powder on the affected area. Do not wear a bra; if large breasted and you need the support, wear a well-fitted, cotton sports bra with wide straps and support on the collarbone. Do not use adhesive tape on treated skin. If tape is necessary, use paper tape. Do not apply direct heat or cold to the radiated area (heating pad, icepack, etc.). Use lukewarm water while bathing.
Your radiation therapist should provide you with a sun-blocking product with a protection factor of at least SPF 15. Continue to shield your skin from sunlight for at least one year after radiation. If you do develop lymphedema during the radiation therapy, immediately start Complete Decongestive Physiotherapy (CDP), which includes manual lymph drainage, compression bandaging, compression garment, skin care, etc.
Patients who undergo reconstructive surgery, in addition to being well-educated about the initial breast cancer surgery, also will need to be educated in the do's and don'ts of reconstructive surgery. Again, you need to have good rapport with your team leader (primary care physician) and have confidence in the plastic surgeon, making sure that he or she respects your concerns about lymphedema. There are a number of techniques available such as the immediate reconstruction with a temporary tissue expander (an elastic bag with a valve) which is placed underneath the chest muscle. Over a period of two-to-four months, saline is injected once or twice a week into the expander until the skin is stretched and a permanent implant can be inserted. Watch the injection site closely for inflammatory changes, possibly leading to lymphedema. According to James J. Romano, M.D., a cosmetic surgeon in San Francisco, if the implant pocket is placed up high in the axilla or near the clavicle, the pressure itself may lead to compromise of venous return and may produce or exacerbate lymphedema.
Some women opt to have the TRAM flap procedure which uses the rectus abdominus muscle (abdominal muscle). The muscle, fat and skin are pulled up to the breast area without cutting the original blood vessels. This procedure requires a large abdominal incision which is somewhat of a concern, especially in the patient with bilateral mastectomies and existing arm lymphedema, since there are very few options left in the body for re-routing the lymph fluid (and since the procedure weakens the abdominal wall).
Another procedure is the latissimus dorsi flap. An incision is made under the collarbone and a temporary tunnel is created under the skin. Part of the latissimus dorsi muscle from the upper back and the fat and skin covering it are pulled through this tunnel and relocated to the breast area. This procedure leaves a very extensive scar, usually 12-15 cm, in the upper back area. For patients at risk of developing lymphedema, this is another concern, since scars block lymphatic flow in the area and limit options for lymph drainage.
Most patients who undergo reconstructive surgery after breast cancer do well. Of course, patients with existing lymphedema are, and should be, concerned about worsening their lymphedema. The same guidelines as for breast cancer surgery should be followed during recon-structive surgery. Ideally, some intensive manual lymph drainage prior to surgery is in order to be in optimum condition.
Tamoxifen (Nolvadex), a non-steroidal anti-estrogen, is both the most studied and widely prescribed anti-cancer drug for breast cancer in the United States11. Although Tamoxifen has been noted to increase the survival rate14, it does have multiple side effects, some serious. The side effect of most concern is the increased risk of endometrial cancer and, for post-menopausal women, the increased risk of osteoporosis and heart disease. Other serious side effects are pulmo-nary emboli (a blood clot in the lung) and phlebitis in the vein, possibly causing lymphedema 11,12,13. People who have a history of blood clots should not take Tamoxifen. Other medications have not yet been studied or documented.
Any type of surgery that involves lymph-node dissection and/or radiation raises the risk of developing lymphedema. Until we have a better understanding of the lymphatic system and ways to treat lymphedema, patients need to be educated in the do's and don'ts of possibly avoiding lymphedema and follow those guidelines before surgery, during the hospital stay, post-operatively, and during any additional treatments.
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