Women Manage Lymphedema After Bouts With Breast Cancer

A vine of pink begonia blooms climb up Kate Collins' left arm in what looks like a full sleeve of tattoos. People around town regularly stop her and ask about them only to realize, with a closer look, that there is a seam creeping up her arm. The flowers are not tattoos; they're a printed pattern on a compression sleeve, a band of medical grade material that she wears every day to ward off the swelling from lymphedema, a condition related to the breast cancer diagnosis she received a dozen years ago. Lymphedema can occur after a patient has her under-arm lymph nodes removed to determine whether her cancer has spread. Besides causing swelling, the condition can be painful and increase the risk of skin infections.

Sleeves, like the one Collins wears to keep her lymphedema at bay, feel like tightly wrapped ace bandages. "It's uncomfortable, it's hot and I hate wearing it," says Collins, 64, who had both her breasts and the lymph nodes on her left side removed. "But I figure if you've got to wear it — you might as well make a fashion statement." Collins keeps a basket of sleeves in the living room in her home in Northampton. The one with a bluish gray snake that wraps around her arm she wears while gardening. Another sports a smiling sun. All of them keep her lymphatic fluid — waste that is normally filtered out of the body by the lymph nodes — from pooling in her arm. She's had to give up wearing some of her rings or bangle bracelets because of swelling in her fingers and wrists. Summer used to be her favorite season, but because the sleeve makes her feel hot, she now stays inside in the air conditioning or goes out only in the cool morning air.

"It is a chronic disease," she says of lymphedema. "As if you don't remember that you had breast cancer ... here is a reminder." Once a woman has had lymph nodes under her arm removed, she is at permanent risk of developing lymphedema. And, when she gets it, there is no way to get rid of it. The two ways to ease the symptoms are the compression bands and light massage. It's a breast cancer side effect that hasn't gotten enough attention, says Collins. "Nobody told me that I was going to get lymphedema, nobody warned me," she says. "Wouldn't you think that my surgeon or my oncologist would say, 'by the way, you lost all your lymph nodes, you are at risk of lymphedema." But no one did. When her lymph nodes were removed a dozen years ago, a medical assistant in the New York hospital where she was being treated left her with a few cryptic words, "Sometimes ladies' arms swell." The lymphatic system looks much like a root system directly under the skin that runs throughout the body.

At certain junctions, pea-sized pockets, the lymph nodes, are working to pump and filter the body's fluid waste. People generally have between 500 and 700 lymph nodes throughout the body with 15 to 30 under each arm. The waste they carry is mostly blood cells, but there can also be bacteria or even fat mixed in. Doctors typically remove the lymph nodes to check for the spread of cancer cells. "It's kind of our garbage picker-upper system," says Lisa McCutcheon, an occupational therapist, who works with breast cancer survivors at Cooley Dickinson Hospital in Northampton. She teaches cancer survivors how to perform manual lymph drainage on their own bodies. It's a technique that is like an extremely light massage. "A manual lymphedema coach almost serves as a traffic cop," she says. "So, if there is swelling, I am going to teach them how to reroute it down a pathway that is a healthier pathway. It's almost like a highway system — if it gets backed up — nothing can move." People might have a feeling of fullness or achiness before they see any swelling. If they intervene quickly enough, there is hope they can prevent significant swelling, she says. "It's good to know what isn't normal, so you can catch any issues," she says.

"We are trying to give a lot of education around prevention and awareness, so if there is an issue people can act on it quickly." At the time of her cancer diagnosis, Collins was living in Long Island, New York working as a school district administrator, and the trauma of having both her breasts removed foremost on her mind. Those few words from the medical assistant about possible swelling didn't seem significant. "Did I process that? Of course I didn't. I was getting ready to get cut open and maybe die," she says. Doctors today are more conscious of making patients aware of the risk of lymphedema, says Michelle Helms, a general surgeon at Cooley Dickinson who treats women with breast cancer. Over the last 15 years there also has been a national movement to reduce the number of lymph nodes that are removed. Surgeons in the past might have stripped the armpits of them, leaving patients at high risk of developing lymphedema, but today surgeons are more careful to take only those that must go says Dr. Holly Michaelson, chief of surgery at Cooley Dickinson.

"Significant lymphedema is life altering and I think surgeons have done everything we can to make sure that fewer people get lymphedema," she says. These days, most breast cancer patients have just one or two lymph nodes removed. As a result, the condition is less common. Women who have fewer than four lymph nodes removed have a less than 4 percent chance of developing lymphedema. Women with more advanced breast cancer and have all of the lymph nodes removed, face a risk of up to 20 percent, Helms says. With the accompanying pain and swelling, this can significantly diminish a patient's quality of life. "You are kind of dragging a big old water balloon in the arm," she says. "This can be really tough." The stretched skin also becomes weak and can result in ulcers, which can easily lead to infections. By intervening quickly and being educated about the condition, women can lower their chances of developing severe infections, says McCutcheon. Melissa Ross of Florence caught her lymphedema early. A little more than a year after her surgery to remove both of her breasts, she noticed some slight swelling.

Her doctors at Cooley Dickinson had warned her about lymphedema, so she was looking for it. "I knew what it was right away," she says. She started learning about manual lymph drainage. "I sort of jumped on it. I didn't wait till it was really bad." Sometimes over a multi-week period she goes to see McCutcheon twice a week, but lately she's found ways to manage her symptoms at home. A dip in her backyard pool, she's found, eases the swelling. "Being submerged in water puts pressure on your lymphatic system, so it pushes the fluids out," she says. Other days, she jumps on a mini trampoline in her bedroom. The force of gravity can also works wonders, she says. ?????? Lymphedema never caused her significant pain; she still works part-time as a hairdresser, and rarely does she wear her compression sleeve. Sometimes her skin around her right elbow gets taut, but she knows how to manage it and she credits her mild condition with catching it early. Now retired, Collins wishes that someone had told her to seek treatment sooner. In the three years between her breast surgery and her lymphedema diagnosis, any small cut or scrap could leave her with a severe infection, and she had no idea why. "It is important to keep the skin healthy because the skin is a barrier," says McCutcheon. "If the lymphatic system is already slowed down — you can have an infection pretty seriously." This is what happen to Collins.

One night she woke up in a pool of sweat to find that her left arm had tripled in size and turned a dark shade of red. She rushed to the emergency room in pain and with a fever. Doctors diagnosed an infection that stemmed from a bug bite, but didn't mention lymphedema. The swelling still hadn't gone done six months later when she went to Cooley Dickinson for physical therapy for some herniated discs in her back. Her therapist, who was also certified lymphedema therapist, made the diagnosis. Since then Collins has learned to manage her lymphedema. She bought the collection of compression sleeves and the therapist taught her how to gently massage her arm to ease the swelling. "I don't have to go to work because I'm retired, so I manage my lymph fluid in the morning," she says. "Or I do it when I am putting lotion on my arm."

Signs of Lymphedema

Lymphedema is somewhat unpredictable and doctors do not fully understand why some people develop lymphedema and others do not. People who have had several lymph nodes removed and/or radiation treatment in the axillary area (underarms) during cancer treatment are at higher risk of developing lymphedema. Lymphedema can occur after treatment for any type of cancer, but it is most commonly associated with breast cancer, prostate cancer, lymphoma, melanoma and cancers in the pelvic area such as bladder, testicular or gynecological cancers. Obesity, lack of exercise and infections after surgery are also risk factors.

Signs and symptoms of lymphedema:
-Swelling in the arm or leg (clothes or jewelry feel tighter)
-Arm or leg feeling heavy or tight
-Weakness, decreased flexibility, difficulty moving
-The skin thickens (hyperkeratosis) or hardens
-Pain and redness in the arm, hand, leg or foot

From Cancer to Career Changes, Kathy Bates Talks Life's Challenges

Kathy Bates knows how to roll with the punches. In the last 14 years, she has beaten both ovarian cancer and breast cancer. And, after a long and lauded career in film, the 69-year-old actress has shifted her focus to TV, starring in four seasons of FX’s American Horror Story and playing actress Joan Blondell in FX’s Feud. Next, she’ll star as Ruth, the owner of a California cannabis dispensary, in Netflix’s comedy Disjointed, out August 25.

An ongoing challenge for Bates is lymphedema, a blockage in the lymphatic system often triggered by removing lymph nodes during breast cancer surgery. The chronic condition causes excessive swelling in the arms and legs and affects 10 million Americans, “yet nobody really knows what it is,” says Bates. She’s now a spokesperson for the Lymphatic Education & Research Network (LE&RN). We caught up with Bates to talk about lymphedema, her newfound niche in TV and ditching the prosthetics after a double mastectomy.

Cancer and its aftermath changed my outlook in a profound way. I’ve become less of a hermit and I travel more. I really enjoy every moment of my life now. It’s not that every moment is terrific—we all go through tough times— but I try to be more present and grateful for the good times that I have. I realized that I had to get back in shape. I started walking more. I’ve lost around 55 pounds. Just being physically free of that extra weight has been liberating and has helped keep the [lymphedema] swelling down. I avoid salt and alcohol, too, because of lymphedema.

I’ve recently decided to “go flat.” I read that more and more women are doing that, and finally I came to the conclusion, “I don’t have breasts anymore, why do I have to pretend like I do?” I have prosthetics and I can put them on for a character, but in my own life I wear Spanx tanks under my shirts and I feel much more comfortable with that than having to strap on a bra with these fake boobs in them. That has given me a lot of freedom and confidence and I just feel better. TV has rejuvenated my career.

I’ve gotten to really push my envelope. Oftentimes, I’m cast as the sort of dumpy dishrag mother or best friend part, so to be able to play someone like [the twisted New Orleans socialite in American Horror Story] Madame Delphine LaLaurie, it’s a panoply of opportunities for an actor. And now I’m getting to do a sitcom with Disjointed. People will see a side of me they haven’t seen before. My two Yorkies are at the very center of my well-being and happiness. My favorite part of every day is when I get to come home and cuddle with them. Their philosophy is: it’s always a good time to take a nap. Wise creatures. I recently bought an electric guitar. I used to play guitar years ago. It brought me a lot of pleasure when I was a teenager growing up and was having tough times. Now that I’m navigating the waters of being older and going through some tough times adjusting to that, I decided I’d like to get back to what gave me joy.

My inner strength comes from my friends. I have a very close group of friends and family and we all help each other through our dark times. That love and support has really flourished in the last few years of being sick. I have really focused on mindfulness. That helps me make better choices both physically, psychologically, and emotionally. If something bad happens, rather than flying off the handle, I try to breathe and focus and wait till the anger/fear subsides so that I can really think through something and realize a) it isn’t about me or b) this is what I can do to change it. The things that I can’t do anything about, I have to learn to let go of.

I think I’ve been living my bucket list for the last few years. I’ve done and experienced so many wonderful things. If I went tomorrow, I wouldn’t be disappointed. I might want to go out and buy a Bentley or a sports car or something like that but then I’d think, “I don’t need all of that stuff.” But cars are always in my fantasy bucket list.

Hope for first drug against lymphedema

Many cancer patients, especially those who've undergone breast cancer treatment, experience painful, swollen limbs, a condition called lymphedema. Now researchers say they've found an underlying mechanism that could eventually lead to the first drug therapy for the debilitating condition. The findings come from research in mice and human cells. However, there's already a clinical trial underway to see whether these lab discoveries will translate into a new lymphedema treatment. It's estimated that 10 million Americans have lymphedema, said Dr. Stanley Rockson, one of the senior researchers on the study.

"Even though many people might not recognize the term, it's a very common condition," said Rockson, a professor at Stanford University School of Medicine in Stanford, Calif. People with lymphedema have excess fluid buildup in parts of the body, usually the arms or legs. Most often, the condition arises after certain cancer treatments damage the lymphatic system, preventing lymph fluids from draining properly. Right now, there is no cure or drug therapy for lymphedema, Rockson said. Instead, it's typically managed with measures such as massage, compression garments and pneumatic compression devices. Lymphedema is not just a cosmetic issue: It can be uncomfortable, hinder range of motion, and make people vulnerable to infections, according to the American Cancer Society. "It can severely limit physical and social functioning," Rockson said. In the new study, he and his colleagues aimed to get a clearer understanding of the molecular mechanisms that drive lymphedema. So they turned to a drug called ketoprofen.

The drug, a painkiller, has actually been studied as a lymphedema treatment. The problem, according to Rockson, is that ketoprofen can have side effects for the heart, gastrointestinal tract and kidneys. Safer alternatives are needed, he said. To zero in on ketoprofen's good side — its action against lymphedema — the researchers used lab mice induced to have a lymphedema-like condition. The scientists found that the drug prevented tissue injury and fluid buildup by blocking a protein called leukotriene B4 (LTB4). It turned out that the same protein was elevated in cell samples from lymphedema patients. And not only ketoprofen battled lymphedema in mice. Another drug called bestatin worked just as well. Bestatin is not approved in the United States, but it has been used for years in Japan as a cancer treatment. The advantage of the drug, according to Rockson, is that it has more "selective" action against LTB4 — and fewer side effects — than ketoprofen. Based on the lab findings, a clinical trial testing bestatin against lymphedema is already underway, Rockson said. Eiger BioPharmaceuticals, based in Palo Alto, Calif., is funding that trial (and acquiring the drug from its Japanese manufacturer). Rockson and a colleague on the study are consultants to the company. "I think patients should feel very encouraged that work is being done," said Dr. Theresa Gillis, chief of the rehabilitation service at Memorial Sloan Kettering Cancer Center in New York City.

Still, the role of bestatin — if any — won't be clear until the clinical trial results are in, according to Gillis, who wasn't involved in the research. The "mouse model" of lymphedema, she noted, doesn't exactly replicate what happens in cancer patients who undergo radiation therapy or surgical removal of the lymph nodes. And, treatments that work well in animals don't always pan out in people. Gillis agreed that new lymphedema treatments are badly needed. "Millions of dollars are spent each year in the U.S. on treatment of lymphedema," she said. "And those millions are often costs carried by the patients themselves." Beyond costs, Gillis added, the current therapies are burdensome. "Patients with severe lymphedema wear specialty compression garments daily, and may need to use compression bandaging every night — or a second specialty night garment," she said. "Even with optimal efforts by the patient, edema can become progressively worse over time."

The new findings offer a clearer understanding of the underlying process in lymphedema, according to Gillis. Hopefully, the new understanding will "lead us toward eventually preventing the condition altogether," she said. The bestatin trial results are a few years away. But Rockson said he thinks patients can take heart in the fact that the work is happening. "Historically," he said, "lymphedema patients have been largely ignored, and that's led to a certain sense of hopelessness. But now I think we can say answers are on the horizon."

Exercise Does Not Prevent Lymphedema in Breast Cancer

The authors found that 31% of the patients wore the sleeve about 75% of the time. Forgetting to wear the sleeve and discomfort were the most frequently cited barriers to its use. For exercise, 55.4% of the patients performed stretching exercises one or more times a week; 47.4% performed strengthening exercises; and 48% performed stretching and lymph flow exercises. Being "too busy" was the most common reason for not doing the exercises.

The attitudes toward exercise were either neutral or favorable. For quality of life, the education-only group experienced a larger decrease in breast cancer anxiety compared to the education-and-exercise group (from baseline to 12 months, P = .04; to 18 months, P = .04). Not surprisingly, Dr Paskett noted, lymphedema status did affect quality of life. At 18 months, scores on the FACT-Band 4 lymphedema subscales were worse for those with lymphedema than those without it (P = .002). Strength Training No Longer Taboo In a discussion of the paper, Ann Partridge, MD, from the Dana Farber Cancer Center, Boston, Massachusetts, commented that these results are disappointing and that they could perhaps be explained by several hypotheses.

One is that the wrong type of exercise may have been used. "Maybe it was not the type of exercise that would benefit these patients," said Dr Partridge. "The physical therapists could have been more focused on range of motion and less on cardiovascular and strength training," she explained, adding that when this study was initiated, strength training was considered somewhat taboo for this population and that that view changed during the study period. Since this study began, research on the use of gradual strength training for breast cancer patients has been published, Dr Partridge pointed out. "These results suggest that not only is progressive weight training not bad for these patients, but it can also improve exacerbation of lymphedema. The study didn't look at prevention, but exercise did not cause it to occur."

Another hypothesis is that confounders may have affected the results. "Even though this was a randomized study, it could have been unbalanced," she said. "They tried to prevent contamination, but we all know that unless you are testing a novel, targeted therapy that you can only get in the cancer center, it is difficult to prevent this." For example, patients can go out and exercise, or they can see a physical therapist. "I think the researchers have collected those data on the patients who were not in this intervention, so we may have more information on that," she said. There are also unmeasured confounders. "One of the biggest predictors of lymphedema is the receipt of radiation to the breast and axillary region," Dr Partridge emphasized. "I should say that it was measured, but the impact has not yet been analyzed." The quality of life data showed that the women in the intervention group experienced more anxiety than the control patients. "Were they upset because they were not adherent, for example?" she questioned. "This really highlights the need for rigorous evaluation of interventions before we adopt them into clinical practice."

6 Things You May Not Know About Lymphedema

Edema during pregnancy — Should you drink less water?

Most women feel that one should limit their intake of fluids in case of swelling of legs due to accumulation of water in the cells during pregnancy. It is caused when the water leaks from the cells into the extracellular space leading to edema.

This in turn causes many physiological changes in the body, of which swelling of the face, arms and legs is quite common. And hence, it is believed that lowering fluid intake might help, which is not the case. Here are 10 ways pregnancy changes your body that nobody tells you about. According to Dr Y S Nandanwar, Professor and Head of Department, Gynecology, Lokmanya Tilak Medical College and Sion Hospital, Mumbai, ‘Almost 80% of our body contains water, which is needed for maintaining normal functioning of the body.

But, excess or less intake of water can hinder with the pumping of blood which in turn puts you at risk of oedema. Moreover, release of the hormone progesterone during pregnancy causes water retention, which is the cause of edema. This clearly indicates that lowering your intake of water will only worsen the condition rather than improving it.’

Here are some expert tips to deal with swollen feet or edema during pregnancy. However, this is not the only reason of fluid accumulation in body. Other causes that might lead to edema include protein deficiency (abnormal ratio of albumin/globulin), anaemia, heart disease, thrombus and elephantiasis. Hence, it is a good idea to consult your gynecologist at the earliest as soon as you experience swelling of the legs or edema during pregnancy rather than opting for self-care or home care.

And as far as intake of water (fluids) is concerned, Dr Nandanwar recommends that every pregnant woman should consume at least 10 – 12 glasses of water (which accounts to around three to four litres) per day on a daily basis. And keep in mind that lowering your fluid intake won’t help you in dealing with edema. Also read about weight gain during pregnancy — what’s good and what’s not.

Kathy Bates is spreading Lymphedema Awareness. Watch her interview on The Doctors. March is Lymphedema Awareness Month!

Academy Award-winning actress Kathy Bates sits down with The Doctors to talk about an illness that affects approximately 10 million Americans and hundreds of millions worldwide: lymphedema.

Lymphedema is a condition caused by blockages in the lymphatic system, which prevent fluid from draining well, leading to swelling, usually in the arms and legs.

Bates says that following her double mastectomy for breast and ovarian cancer, she awoke from surgery feeling symptoms immediately.

“I had seen someone with lymphedema who didn’t take care of it, and the toxins were visibly oozing," she says. "This was my experience with lymphedema. I wasn’t educated, and I was terrified this would happen to me.

"Doctors focus on the cancer, and they don’t really talk about lymphedema,” Bates adds.

When lymph nodes are removed following breast cancer, the body’s ability to trap toxins is compromised, and the toxins can seep out and cause a great deal of pain.

Bates admits the pain is something she deals with daily. “I have pain. I have to massage every night," she says. "I have a lot of fatigue, and I need to wear my compression sleeves.”

Her treating physician, Dr. Emily Iker, discusses the need for patients to be seen immediately following surgery.

"Early intervention and diagnosis is critical, especially since lymphedema is a chronic and symptomatic condition,” Dr Iker says.

Bates is proud of her role as both a champion and spokesperson for LE&RN: Lymphatic Education and Research Network.

“I decided to be their spokesperson because I learned that more than 10 million people suffer with this – more than muscular dystrophy, ALS, multiple sclerosis, Parkinson’s disease and AIDS combined," she says. "My jaw dropped. The strange thing is that many celebrities are suffering with this, but nobody wants to talk about it.”

Bates discusses the need for education to train therapists specifically in lymphatic draining and the need for more research.

You can join Kathy Bates in the LE&RN Network in their first 5K Run on Bates’ birthday, June 28 in Venice, California.

Watch the interview here: http://on.fb.me/1aXfvTf

March is Lymphedema Awareness Month

Lymphedema is the fluid that is retained in your body, but mostly appendages, after cancer surgery, radiation and/or chemotherapy. 

There is treatment, which includes compression garments and manual lymphnode drainage massage therapy, however, Medicare and many other insurance policies do not pay for these garments and treatments, often leaving patients to suffer infections and increased disability.

HR3877, is currently being debated in the House of Representatives and if passed into legislation, the bill will set a precedent for insurers to follow and cover the cost of medically necessary compression supplies.

Contact your congressmen and senators and stress the importance of standing behind this bill. 

To write your representative now, go here for an easy interactive form from the Lymphedema Treatment Act Organization.