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In addition to my personal experience with symptoms, diagnosis, treatment and daily self-care, you will find 4 very helpful articles  from the NLN printed below

 

HELPFUL HINT:

Scroll down to see pictures of arthritic shanks for your rings--just before the NLN articles begin!

 

 

My own lymphedema experience: NOTE--this is my PERSONAL experience with lymphedema and may differ from yours. Not everyone has the same signs/symptoms.  Not every physican/facility does the same thing.  This is only to give you an idea of what you may expect if you are put into a lymphedema therapy program.

 

Initially--

I underwent my bilateral mastectomies and lymph node dissection in July 1997 and  was officially diagnosed with lymphedema in November 1998.  In retrospect, I now realize that I actually had developed this condition within the first few weeks after my surgery.  I just didn't associate the symptoms that I had with the things that I read in the books--and I'M a NURSE!!

 

Let me back up a moment and briefly discuss my surgery and how I came to have lymphedema in BOTH arms.  I initially had my surgical biopsy and lymph node dissection (R side) in early July 1997. Due to the extensive nature of my cancer, the biopsy actually turned into a partial mastectomy. I had approximately 16 nodes or so removed from my R axilla. 

 

Approximately 3 weeks later, I had a bilateral total mastectomy.  During that surgery approximately 18 nodes were removed from my L side--but they were in a "weird" place. They were in the tail of my breast tissue (sort of "next to" where my L breast had been, not in my axilla where you would expect them to be)  And in my post-surgical fog, I conveniently "forgot" that nodes had been removed from my L side ("Gee, my armpit didn't hurt like the R one did").  Big mistake on my part!

 

I knew that I needed to baby that R arm, so I worked the daylights out of the L: carrying 5 plastic grocery sacks at a time, carrying my purse on that shoulder, basically having my L arm do double duty.

 

About 2-3 weeks after my surgery, I noticed that I had a tremendous amount of pain in my inner upper arms--the L was worse.  I thought it was due to where the drain had been on the R, but had no clue why the left was uncomfortable.  They felt kind of "knotty" to me. I figured it was normal postop pain so I had my hubby gently massage them with some lotion.  I would cry through the massage, but knew it needed to be done--it actually felt better once he had done it for 15 minutes.  I just DIDN'T know it was lymphedema.  My arms LOOKED pretty much like they always did, except for the knottiness and the pain.

 

We continued the massage for about another 2-3 weeks, faithfully, every night.  Then the pain subsided and I went on with my life. I took the appropriate precautions with my R side.

 

Jump forward 14 months--

In early November 1998, I noticed that my watch was waaaay too tight to wear--it barely closed around my L wrist.  All of my rings had become uncomfortably tight as well.  But I didn't think much about the rings, as I hadn't been able to remove my wedding set for almost 2 years.  I started having a nagging feeling in the back of my mind that something was up.  But because I didn't have that scarred L axilla, I just didn't think about it being lymphedema. Did I mention that I was a NURSE?

 

I awoke one morning a few days before my regular oncology check-up. I noticed that the back of my L hand was puffy and I couldn't see any of the usual veins on the back of my hand or inner forearm.  I'm naturally VERY fair-skinned so I ALWAYS see my blue veins there. Hmmmmm....

 

I also noticed that the back of my hand and forearm felt bruised to the touch, although there were no marks.  My upper arms also looked "mottled" (like a faint roadmap under my skin). Then I compared my arms to each other. HOLY COW! How could I have missed the difference in size between the 2?  In addition to my puffy L hand, I couldn't get my fingers closed around my wrist (I STILL use this as my "barometer" to see if I'm getting into trouble). My forearm was also larger on the L.

 

I told my onc about the bruised feeling and the puffiness during my appointment. She suggested that it might be carpal tunnel (I was doing a lot of computer work) until she took one look at the size difference.  You would not have noticed the difference until you compared them--it didn't look like the "elephantiasis" I was expecting lymphedema to be.  I received as referral to their Occupational Therapy Department.  They had an OT on staff who had special training in lymphedema therapy (manual lymph massage, wrapping w/ low compression bandages and use of the pump).

 

My experience with treatment for lymphedema: The OT sessions

 

I met with Kathy, my OT, for a consultation and treatment. Initially, she took several measurements as a baseline prior to treatment.  Areas measured included: axilla, about 4" above my elbow, about 6"above my elbow, about 4" and 6"above my wrist, my wrist, the breadth of my hand and my middle finger. She compared the measurements between the R & L sides.at every visit.

 

During each therapy session, Kathy would start out by repeating the measurements. I would undress from the waist up & put on a hospital gown. Then I would lie on my back on a massage table and she would perform manual lymph drainage massage on both arms.  I actually brought my own favorite scented lotion and would almost fall asleep during the massage.

 

She'd tell me to flip over onto my stomach and proceed to direct the lymph fluid on my trunk (my sides and back).  She taught my husband to do this part (which we continue to this day).  I also learned that I can tell when my truncal (upper body & chest) edema was worsening--that "hump" at the base of my neck gets bigger than usual. ANOTHER barometer for me!

 

For my lymphedema, it required that I have therapy sessions initially 2x a week for 3 weeks and then weekly thereafter as we saw improved results of the massage and low-compression bandaging.  The sessions lasted from late November until April. Once I reached a point where the measurements were consistant from one appointment to the next, I was fitted by the Orthotics/Prosthetics Department. I'll get to that later.  I currently massage once or twice daily (usually for a few minutes in the shower & a few minutes in the evening).  Another crucial part of lymphedema management is wrapping with low-compression (also called "short-stretch") bandages.

 

 

Wrapping my arms/bandaging:

 

I received LOW COMPRESSION bandages in various widths from Kathy. Notice that I emphasize LOW compression.  While these resemble ACE-type bandages, they do so in outward appearance ONLY.  ACE are very stretchy and are HIGH compression bandages. You cannot interchange them with LOW compression bandages!

 

We (she taught me self-bandaging from the outset) started with what looked like rolled gauze bandages and wrapped beginning with each finger, in a specific pattern. Then we proceeded up my hand and to my wrist. At that point we began with the bandages. We began with a narrow bandage roll on my hand, at the base of my fingers and wrapped upward on my arm until that bandage was used up. Then we'd use another wider bandage and overlap them until it, too, was used up. Then we repeated this with the widest bandage we had and use those ACE-type clips to hold it in place.

 

Lucky me, I got to do this on both arms. Initially it would take me over 30 minutes to wrap EACH arm!  I quickly became adept and can now do it in about 15 minutes total.

 

I initially wore them during the day, but found it awkward, so I tried wearing one arm during the day and the other at night. I eventually ended up just using them both during the evening & night (at least 8 hours). I would also wear Isotoner gloves (inside out so the seams wouldn't bug me).

 

A one point Kathy added foam rolling to this regimen, as my skin was SOOO sensitive (even bandaids tear my skin). I would use a silk sleeve (like a tshirt) for protection, use the gauze on my fingers and roll the thin foam on my arm. The whole thing was covered by the low compresson bandages. 

 

I won't lie--it was a pain in the butt but SOOO worth it!  I was amazed at the results of the massage combined with the bandaging.  It actually felt GOOD to get the arms wrapped and equally as good to remove them!

 

Getting my compression sleeves:

 

As I mentioned, once I was stable it was time to be fitted for my compression sleeves and gauntlets (little glove-like things with the fingers cut off).  They are available by prescription and it is VERY IMPORTANT to get measured for them. If they are too snug, they'll be very uncomfortable and could cause problems.  If they are too loose, they aren't doing their job and you might as well not even wear them. The OT/PT (Occupational/Physical therapist) will measure the length of your arms, and take measurements of your arm's circumference all the way up. 

 

Usually, they have standard sizes in stock and you may get them immediately.  In my case, as I was cursed with upper arms that are VERY disproportionate to my forearms, mine were a special order.  They cost over $350 and insurance covered most of it.  Mine arrived in 4-6 weeks.

 

 

My daily self-care routine:

 

Every morning in the shower, I spend about 2-3 minutes per arm doing self-massage. I start at my fingers/hand and work my way up my arm. Instead of guiding the fluid to my armpit (which is compromised from the surgery), I guide it around to the back of my arm and toward my back. I am usually pressed for time, so I use the soap as I massage.  I check my cuticles as I dry off and look for any breaks in my skin. I use lotion on my hands and arms and use antibiotic ointment w/ bandaids for torn cuticles and any bug bites.

 

In the evening (while watching TV or getting ready for bed), I repeat the self-massage for 5-10 minutes per side. I then apply my compression sleeves and gauntlets and, looking sexy as ever (LOL), I'm ready for bed.

 

This is really NO big deal to me anymore. While it's annoying to realize that this is a lifelong condition, it is a MANAGEABLE lifelong condition if treated!!

 

FOR THOSE SWOLLEN FINGERS:  arthritic shanks.  Side views of arthritic shanks which open to allow the ring to slide easily on/off. Any trusted and competent jeweler can cut your rings off (if necessary) and put the shanks on.  It costs approximately $40-80 dollars to have this done (a double band is more costly than a single band).

 

2rings_side_comparison.jpg

1st photo: shows a single band and double band (for wedding sets) in the "open" position.

arthshankdbl01.jpg

2nd photo: shows a double arthritic shank in the "open" position.

arthshankdblclosed.jpg

3rd photo:  Ring can then be removed or slid "closed" and locked.

EMAIL ME

The following 4 articles come directly from the website of the NLN

(National Lymphedema Network)

 

Lymphedema: A Brief Overview

 

What Is Lymphedema?

Lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary).

 

When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in lymphangitis (infection).

 

Lymphedema should not be confused with edema resulting from venous insufficiency, which is not lymph-edema. However, untreated venous insufficiency can progress into a combined venous/lymphatic disorder which is treated in the same way as lymphedema.

 

What Causes Lymphedema?

 

Primary lymphedema, which can affect from one to as many as four limbs and/or other parts of the body, can be present at birth, develop at the onset of puberty (praecox) or in adulthood (tarda), all from unknown causes, or associated with vascular anomolies such as hemangioma, lymphangioma, Port Wine Stain, Klippel Trenaury.

 

Secondary lymphedema, or acquired lymphedema, can develop as a result of surgery, radiation, infection or trauma. Specific surgeries, such as surgery for melanoma or breast, gynecological, head and neck, prostate or testicular, bladder or colon cancer, all of which currently require removal of lymph nodes, put patients at risk of developing secondary lymphedema. If lymph nodes are removed, there is always a risk of developing lymphedema.

 

Secondary lymphedema can develop immediately post-operatively, or weeks, months, even years later. It can also develop when chemotherapy is unwisely administered to the already affected area (the side on which the surgery was performed) or after repeated aspirations of a seroma (a pocket of fluid which occurs commonly post-operatively) in the axilla, around the breast incision, or groin area. This often causes infection and, subsequently, lymphedema.

 

Aircraft flight has also been linked to the onset of lymphedema in patients post-cancer surgery (likely due to the decreased cabin pressure). Always be sure to wear a compression garment (sleeve, stocking) when you fly, even if you do not have lymphedema. (For more information, see the "Aircraft Flight" reprint available through the Educational Corner. (NLN website)

 

Another cause of lower extremity lymphedema is that resulting from the use of Tamoxifen. This medication can cause blood clots and subsequent DVT (deep venous thrombosis).

 

Radiation therapy, used in the treatment of various cancers and some AIDS-related diseases (such as Kaposi-Sarcoma), can damage otherwise healthy lymph nodes and vessels, causing scar tissue to form which interrupts the normal flow of the lymphatic fluid. Radiation can also cause skin dermatitis or a burn similar to sunburn. It is important to closely monitor the radiated area for any skin changes, such as increased temperature, discoloration (erythema) or blistering which can lead into the development of lymphedema. Be sure to keep the area soft with lotion recommended by your radiation oncologist.

 

Lymphedema can develop secondary to lymphangitis (an infection) which interrupts normal lymphatic pathway function. A severe traumatic injury in which the lymphatic system is interrupted and/or damaged in any way may also trigger the onset of lymphedema. Although extremely rare in developed countries, there is a form of lymphedema called Filariasis which affects as many as 200 million people worldwide (primarily in the endemic areas of southeast Asia, India and Africa). When the filarial larvae from a mosquito bite enters the lymphatic system, these larvae mature into adult worms in the peripheral lymphatic channels, causing severe lymphedema in the arms, legs and genitalia (also known as Elephantiasis).

 

Symptoms of Lymphedema

Lymphedema can develop in any part of the body or limb(s). Signs or symptoms of lymphedema to watch out for include: a full sensation in the limb(s), skin feeling tight, decreased flexibility in the hand, wrist or ankle, difficulty fitting into clothing in one specific area, or ring/wristwatch/bracelet tightness. If you notice persistent swelling, it is very important that you seek immediate medical advice (and get at least one second opinion) as early diagnosis and treatment improves both the prognosis and the condition.

 

Lymphedema develops in a number of stages, from mild to severe (referred to as Stage 1, 2 and 3:

 

Stage 1 (spontaneously reversible):

Tissue is still at the "pitting" stage, which means that when pressed by fingertips, the area indents and holds the indentation. Usually, upon waking in the morning, the limb(s) or affected area is normal or almost normal size.

 

Stage 2 (spontaneously irreversible):

The tissue now has a spongy consistency and is "non-pitting," meaning that when pressed by fingertips, the tissue bounces back without any indentation forming). Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.

 

Stage 3 (lymphostatic elephantiasis):

At this stage the swelling is irreversible and usually the limb(s) is/are very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery called "debulking" at this stage.

 

When lymphedema remains untreated, protein-rich fluid continues to accumulate, leading to an increase of swelling and a hardening or fibrosis of the tissue. In this state, the swollen limb(s) becomes a perfect culture medium for bacteria and subsequent recurrent lymphangitis (infections). Moreover, untreated lymphedema can lead into a decrease or loss of functioning of the limb(s), skin breakdown, chronic infections and, sometimes, irreversible complications. In the most severe cases, untreated lymphedema can develop into a rare form of lymphatic cancer called Lymphangiosarcoma (most often in secondary lymphedema).

 

Lymphangitis (Infection)

Signs and symptoms of lymphangitis (infection) may include some or all of the following: rash, red blotchy skin, itching of the affected area, discoloration, increase of swelling and/or temperature of the skin, heavy sensation in the limb (more so than usual), pain, and in many cases a sudden onset of high fever and chills.

 

Treatment for infections:

Immediately discontinue ALL current lymphedema treatment modalities (including manual lymphatic drainage, bandaging, pumps, wearing of compression garments) and contact your physician as soon as possible. The antibiotics of choice for these types of lymphatic infections are those in the penicillin family (note: people who develop side effects, such as yeast infections or gastric upset can take Bicillin injections for two weeks), if no allergies are present (for more information about Bicillin, request article reprint "Efficacy of Benzathine Penicillin Administration," $1.75, available through NLN). NOTE: Always carry antibiotics or a prescription with you when you travel.

 

Treatments for Lymphedema

Planning the treatment program depends on the cause of the lymphedema. For example:

 

If the initial signs and symptoms of swelling are caused by infection (redness, rash, heat, blister or pain may indicate an infection), antibiotics will first need to be prescribed. Treating an infection often reduces some of the swelling and discoloration.

 

If the lymphedema is not caused by infection:

Depending on the severity of the lymphedema, the recommended treatment plan should be determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid leggings, Legacy Sleeve, as well as other alternative approaches); e) remedial exercises; f) self-manual lymphatic drainage & bandaging, if instruction is available; g) continue to follow prophylactic methods at all times.

 

Contraindications

1. Post-cancer surgery lymphedema patients who experience a sudden marked increase of swelling should immediately cease treatment and be checked by their physician for possible recurrent tumor or disease. Tumor growth can block the lymphatic flow causing a worsening of the condition. Although not yet proven in a controlled clinical study, many lymphedema specialists believe that patients with recurrent or metastatic disease should not undergo Complete Decongestive Therapy (CDT) in order not to promote the spreading of the cancer. Be sure to discuss this treatment with your doctor.

 

2. Patients with a sudden onset of lymphangitis (infection) should immediately discontinue treatment (see page 4) until the infection is cleared. Patients with histories of vascular disease and who are taking anticoagulants, should have a Doppler and ultra-sound to rule out deep-venous thrombosis before being treated. During treatment, these patients should be followed closely and regular laboratory tests should be performed (prothrombentime).

 

3. Patients who have congestive heart failure must be monitored closely to avoid moving too much fluid too quickly, for which the heart may not be able to compensate.

 

4. If pain is present, discontinue all treatment until the pain subsides or the underlying cause has been determined.

 

 

The information above is adapted from Lymphedema: An Information Booklet, a classic NLN publication now in its sixth edition.

 

 

Prevention

 

Lymphedema Awareness: Before, During And After Breast Cancer Surgery

Saskia R.J. Thiadens, R.N. 1998

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.

 

ETIOLOGY

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).

 

GUIDELINES: BEFORE SURGERY

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 theh ealing 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 Prevention," 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.

 

HOME PREPARATIONS

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.

 

PREPARE YOUR HOSPITAL TEAM

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.

 

POST-OPERATIVE INSTRUCTIONS

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.

 

EFFECTS OF CHEMOTHERAPY

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.

 

EFFECTS OF RADIATION

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.

 

RECONSTRUCTION AND LYMPHEDEMA

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.

 

MEDICATIONS

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.

 

CONCLUSION

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.

 

References

1. Kissen MW, et al. Risk Of Lymphedema Following The Treatment Of Breast Cancer. Br J Surg 1986; 7:580.

2. Ivens D, et. al. Assesment Of Morbidity From Complete Axillary Dissection. Br J Cancer 1992; 66:136.

3. Pezner RD, et. al. Arm Lymphedema In Patients Treated Conser-va-tively For Breast Cancer: Relationship To Patients' Age And Axillary Node Dissection Technique. Int J Rad Onc Biol Phys 1986; 12:2079.

4. Aitken RJ, et. al. Arm Morbidity Within A Trial Of Mastectomy And Ether Nodal Sample With Selective Radiotherapy Or Axillary Clearance. Br J Surg 1989; 76-568-71.

5. Yeoh Ek, et. al. Primary Breast Cancer. Rad Onc 1986; 25:105.

6. Delouche G., et. al. Conservative Treatment Of Early Breast Cancer: Long-Term Results And Complications. Int J Rad Onc Biol Phys 1987; 13:29.

7. Greenfield LJ. Venous And Lymphatic Disease, In Schwarts SI, et. al. (eds): Principles of Surgery (ed 6), New York: McGraw-Hill, 1994; 989-1014.

8. Unger E. Diagnostic Imaging And Image-Guided Treatment Of Lymphatic Diseases. National Lymphedema Network Newsletter. Vol 6:1. pp 4-6.

9. Larson D, et. al. Edema Of The Arm As A Function Of The Extent Of Axillary Surgery In Patients With Stage I-II Carcinoma Of The Breast Treated With Primary Radiotherapy. Int J Rad Onc Phys 1986. 12:1557-1582

10. McGrath E. Lymphedema, in Dow KH, Hilderley LJ (eds): Nursing Care in Radiation Oncology. Philadelphia: Saunders, 1992; 323-333.

11. Fisher B, et. al. Endometrial Cancer In Tamoxifen-Treated Breast Cancer Patients: Findings From The National Surgical Adjuvant Breast and Bowel Project (NSABP) B-14. J National Cancer Institute 1994; 86:527-537.

12. Van Leeuwen FE, et al. Risk Of Endometrial Cancer After Tamoxifen Therapy. Arc Intern Med 1992; 152:317-320.

13. Love RR, et. al. Effects Of Tamoxifen On Cardiovascular Risk Factors In Post-Menopausal Women After Five Years Of Treatment. J National Cancer Institute 1994; 86:1534-1539.

14. Brenner, B. "Prevention Pill" - More Harm Than Good? Breast Cancer Action June/July 1998; 48:1-7.

Copyright 2000 National Lymphedema Network.

 

 

Eighteen Steps To Prevention - UPPER Extremeties

For the patient who is at risk of developing lymphedema, and for the patient who has developed lymphedema.

 

WHO IS AT RISK?

At risk is anyone who has had either a simple mastectomy, lumpectomy or modified radical mastectomy in combination with axillary node dissection and/or radiation therapy. Lymphedema can occur immediately postoperatively, within a few months, a couple of years, or 20 years or more after cancer therapy. With proper education and care, lymphedema can be avoided, or, if it develops, kept well under control. (For information regarding other causes of upper extremity lymphedema, see What is Lymphedema?) The following instructions should be reviewed carefully pre-operatively and discussed with your physician or therapist.

 

1. Absolutely do not ignore any slight increase of swelling in the arm, hand, fingers, or chest wall (consult with your doctor immediately).

 

2. Never allow an injection or a blood drawing in the affected arm(s). Wear a LYMPHEDEMA ALERT bracelet.

 

3. Have blood pressure checked on the unaffected arm, or on the leg (thigh), if bilateral lymphedema/at-risk arms.

 

4. Keep the edemic or at-risk arm(s) spotlessly clean. Use lotion (Eucerin, Lymphoderm, Curel, whatever works best for you) after bathing. When drying it, be gentle, but thorough. Make sure it is dry in any creases and between the fingers.

 

5. Avoid vigorous, repetitive movements against resistance with the affected arm (scrubbing, pushing, pulling)

.

6. Avoid heavy lifting with the affected arm. Never carry heavy handbags or bags with over-the-shoulder straps on your affected side.

 

7. Do not wear tight jewelry or elastic bands around affected fingers or arm(s).

 

8. Avoid extreme temperature changes when bathing or washing dishes, and it is recommended that saunas and hottubs be avoided (at least keep arm out of the hottub). Protect the arm from the sun at all times.

 

9. Try to avoid any type of trauma (bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches) to the arm(s). (Watch for subsequent signs of infection.)

 

10. Wear gloves while doing housework, gardening or any type of work that could result in even a minor injury.

 

11. When manicuring your nails, avoid cutting your cuticles (inform your manicurist).

 

12. Exercise is important, but consult with your therapist. Do not overtire an arm at risk: if it starts to ache, lie down and elevate it. Recommended exercises: walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga. (Do not lift more than 15 lbs.)

 

13. When travelling by air, patients with lymphedema (or who are at risk) must wear a well-fitted compression sleeve. Additional bandages may be required on a long flight. Increase fluid intake while in the air.

 

14. Patients with large breasts should wear light breast prostheses (heavy prostheses may put too much pressure on the lymph nodes above the collar bone). Soft padded shoulder straps may have to be worn. Wear a well-fitted bra: not too tight, ideally with no underwire.

 

15. Use an electric razor to remove hair from axilla. Maintain electric razor properly, replacing heads as needed.

 

16. Patients with lymphedema should wear a well-fitted compression sleeve during all waking hours. At least every 4-6 months, see your therapist for follow-up. If the sleeve is too loose, most likely the arm circumference has reduced or the sleeve is worn.

 

17. Warning: If you notice a rash, itching, redness, pain, increase of temperature or fever, see your physician immediately. An inflammation (or infection) in the affected arm could be the beginning or worsening of lymphedema.

 

18. Maintain your ideal weight through a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcohol. Lymphedema is a high protein edema, but eating too little protein will not reduce the protein element in the lymph fluid; rather, this may weaken the connective tissue and worsen the condition. The diet should contain easily digested protein (chicken, fish, tofu).

 

Unfortunately, prevention is not a cure. But, as a cancer and/or lymphedema patient, you are in control of your ongoing cancer checkups and the continued maintenance of your lymphedema.

 

Revised (c) July 1999 National Lymphedema Network. Permission to print out and duplicate this page in its entirety for educational purposes only, not for sale. All other rights reserved. For more information, contact the NLN: 1-800-541-3259.

 

 

In Defense of the 18 Steps to Prevention(c)

William. J. Schuch, Chairman, NLN Board of Directors

 

During the 1998 NLN Conference, Prof. med. Michael Földi addressed the issue of the insistence by some U.S. physicians for "evidence-based" validation of the do's and don'ts contained in the "18 Steps." As he pointed out, "there are cases in which 'anecdotal observations' are in harmony with scientific facts, with established knowledge and looking for evidence by prospective, randomized clinical studies is prohibited by ethical considerations."

 

Cancer survivors who have undergone the excision of lymph nodes and/or radiation therapy are at risk for lymphedema. Yet, the majority of these individuals are unaware of this risk and what can be done to avoid or, at least, delay the onset of lymphedema.

 

The National Lymphedema Network's 18 Steps to Prevention for both upper and lower limbs has been widely disseminated in an attempt to inform those at risk and their health care providers as to the activities or events which have been identified by experienced MD lymphologists as potential triggers for the onset or exacerbation of lymphedema.

 

As the American medical profession is slowly beginning to be brought up to speed on lymphedema, its prevention and treatment, some physicians are inclined to dismiss many of the precautions advised in the 18 Steps because they lack scientific substantiation, i.e. there have been no controlled studies to evaluate which of these events or activities are capable of precipitating the onset of lymphedema in those at risk. This attitude is most unfortunate since patients who might otherwise observe these precautions are, instead, often advised essentially to resume their normal activities. As a consequence, many are blind sided by the onset of lymphedema.

 

While it is true that many of the activities listed in the 18 Steps as potential triggers are based on anecdotal reports rather than structured studies, this is not a problem for experienced MD lymphologists who understand the pathophysiology of lymphedema.

 

In simplest terms, a regional lymphatic network that has been subjected to nodal basin excision and/or radiation has had its capacity to transport and filter the necessary lymphatic load - protein, water, metabolic wastes, viruses and bacteria - curtailed to a greater or lesser degree. This reduced transport capacity is frequently not enough to result immediately in the swelling which is characteristic of lymphedema.

 

From that point forward, however, any activity or event which directly or indirectly further impairs the transport capacity of the affected lymphatic network or increases the lymphatic load (the amount of hi-protein interstitial fluid that is to be returned to the circulatory system via the regional lymphatic networks) has the potential to trigger the onset of chronic lymphedema, viz. swelling that is visible, measurable and palpable.

 

With a thorough understanding of the anatomy, physiology and pathophysiology of the lymphatic system, it is possible to identify certain events or activities which either reduce the transport capacity or increase the lymphatic load, or both. Therefore, it is not a quantum leap in defensible reasoning to conclude that those certain events or activities ought to be avoided to minimize, as far as possible, the risk for lymphedema.

 

Clearly, the following can have the effect of further reducing transport capacity of superficial impaired regional lymphatics: the high-end pressures involved in the taking of blood pressure on the afflicted limb, carrying heavy handbags with over-the-shoulder straps, wearing tight jewelry or elastic bands around afflicted fingers or limbs, wearing heavy breast prostheses, narrow bra straps, tight bras, underwire bras, tight socks, stockings, shoes and underpants.

 

The amount of lymphatic load is directly related to the level of blood flow to the affected areas. Approximately 10% by volume of the fluid delivered to the cells through ultra-filtration ultimately is returned to the systemic circulation via the superficial and deep lymphatic networks. Therefore, heavy lifting with the affected limb, extreme climatic heat and cold, extreme water temperatures when bathing or washing dishes, hot tubs, saunas, sunburn and vigorous repetitive movements against resistance, all of which increase blood flow, should be avoided.

 

Airplane travel involves pressure changes which allow interstitial fluid to pool in the dependent extremities while the vasomotor activity of the lymphangia (the valved vessels which pump the lymph towards the regional lymph nodes) is at a low level because the individual is essentially at rest during flight. Hence, the need to wear compression bandages, sleeves or stockings and to move around as much as possible to prevent the pooling which increases the lymphatic load.

 

Infections have the potential for not only curtailing transport capacity, but also increasing the lymphatic load. Cellulitis and lymphangitis, which can become episodic, inflame the superficial lymphatic vessels, rendering them progressively dysfunctional and, thereby, adversely affecting the transport capacity.

 

A second effect, the so-called "inflammatory response," increases the permeability of the walls of the arterial capillaries to allow for the ultra-filtration of additional plasma protein into the interstitial spaces already laden with the troublesome hi-protein fluid. This increases the lymphatic load and promotes the proliferation of fibrotic tissue which, in turn, further impedes transport capacity.

 

Even a needle puncture, for whatever purpose, through a perfectly antiseptic topical environment can evoke the inflammatory response in the absence of an infection. Therefore, it is important to avoid needle sticks of every kind into the affected limb (cuts, insect bites, animal scratches, cuticle trimming, shaving underarms and legs with a razor blade) and necessary to keep the affected limb, hand or foot scrupulously clean and supple, and as free of topical bacteria and fungi as possible.

 

All of the above precautions make preeminent sense. However, whether or not one or more of these events or activities will be the immediate or ultimate precipitating trig-ger is dependent upon a number of factors. They include, but may not be limited to, the initial degree of surgical impairment(number of lymph nodes excised or the extent of other surgical disruption, or collateral dam-age of nearby lymphatic networks and the amount of lymphatic scarring from radiation therapy) , or the degree of impairment from other causes, i.e. burns, infections, or severe physical trauma; the degree of obesity, if any; the individual's specific lymphatic anatomy and the level of anastomoses (connections) between neighboring lymphatic networks and regions; the lymphangion fatigue factor resulting from long-term dynamic compensation for the impaired networks; and the cumulative or progressive effect of the previously cited events and activities subsequent to the initial impairment.

 

Because cancer survivors and others with secondary lymphatic impairment frequently are not afflicted with lymphedema immediately and appear able to carry on their normal activities without modification does not mean that these activities and events will not trigger the onset of lymphedema eventually. Upwards of five percent of breast cancer survivors are afflicted with lymphedema in their first year of survival, but the lifelong affliction rate is reported to be between 30 and 40% - secondary to en bloc excision of lymph nodes and radiation therapy.

 

There is an abundance of reinforcing anecdotal reports that experienced MD lymphologists and lymphedema therapists, both here and abroad, have heard from their patients concerning one or more events cautioned against in the 18 Steps which immediately preceded the onset of their lymphedema. I would conclude, therefore, that those who choose to ignore these cautions place themselves at risk for lymphedema.

 

The 18 Steps are prudent advice, notwithstanding the lack of scientific research studies which some physicians insist on having before endorsing these precautions. In view of our understanding of the factors in the lymphedema trigger equation - transport capacity vs. lymphatic load - and the substantial anecdotal history that points to the cited activities and events as lymphedema precipitators, one wonders whether controlled studies in which some of those at risk for lymphedema would be encouraged to resume normal activities would be medically advisable.

 

The construct of such controlled studies also would be complex because of the number of alleged triggers, their cumulative or reinforcing effects, the variations in the lymphatic anatomy of individuals, the degree of lymphatic impairment and the fact that the risk for lymphedema is over a lifetime. Clearly, there are significant technical and logistical obstacles to the scientific evaluation of the individual alleged triggers in the short and intermediate term.

 

Observance of the 18 Steps is a matter for the at-risk patient to weigh seriously and to decide. Tragically, lymphedema is a serious quality-of-life issue for many thousands of people who were uninformed as to its prevention and treatment.

 

The 18 Steps are positive steps for improvement in the life-styles of those afflicted with this disease.

 

William. J. Schuch is a patient advocate and advisor to the Bosom Buddies Breast Cancer and Lymphedema support Group in Naples, Florida: Tel (941)514-3150; Fax 514-3846; E-mail wsnobiggie@juno.com; Website www.go-icons.com/bosombuddies.htm.

 

Revised (c) July 1999 National Lymphedema Network. Permission to print and duplicate this this article in its entirety for educational purposes only, not for sale. All other rights reserved. For more information, contact the NLN: 1-800-541-3259.