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A little known side effect with a huge impact

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A little known side effect with a huge impact

Lymphedema affects millions of cancer patients, yet many don’t know their risk and treatment is not always covered
Sept. 3, 2015

https://www.fredhutch.org/en/news/center-news/2015/09/lymphedema-cancer-treatment-side-effect.html

Breast cancer survivor Rebecca Thomas

Breast cancer survivor Rebecca Thomas began experiencing symptoms of lymphedema several years after her treatment. Custom compression sleeves are a common treatment for lymphedema but Medicare and many other insurance companies don’t cover them. Thomas, who couldn’t afford the out-of-pocket expense, said she simply „learned to live with it.“

Photo by Robert Hood / Fred Hutch News Service

First, there was achiness, a pain that never went away. Then, her right arm and hand began to swell, a little at first and then a lot. Then Rebecca Thomas, a breast cancer survivor five years out from surgery, chemo and radiation, was hospitalized with a raging infection.

“The swelling wasn’t bad at first and I didn’t think much of it,” said the 65-year-old food service worker from Seattle, who was diagnosed with cancer in 1988. “But I got a [cut] on my finger and bacteria got in there and I ended up with a very bad case of cellulitis. It got at least three times the normal size, my whole hand and arm. After that is when the trouble really set in.”

Thomas’ “trouble” was lymphedema, a condition that impacts millions of U.S. cancer survivors every year, particularly patients who undergo lymph node dissection as part of their treatment, like actress and “lymphedema ambassador” Kathy Bates.

The National Cancer Institute calls lymphedema “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment.” Others refer to it as cancer’s “dirty little secret” since patients often don’t know they’re at risk for it, general practitioners may not know how to diagnose or treat it and the condition can be so fickle that even cancer care providers can’t predict who will get it or when. Pain, swelling and related infections can happen months, years or even decades after surgery and treatment.

And while early treatment with compression garments can vastly improve patients’ quality of life by keeping the swelling in check, Medicare and other insurers often don’t cover them, forcing many to live with a painful, debilitating, embarrassing and costly condition – sometimes for years.

Breast cancer oncologist and health economist Dr. Gary Lyman

Breast cancer oncologist and health economist Dr. Gary Lyman said there is „absolutely no reason“ why the Centers for Medicare & Medicaid Services should not cover the cost of compression sleeves for patients diagnosed with lymphedema.

Photo by Robert Hood / Fred Hutch News Service

How cancer treatment impacts lymph nodes

Lymphedema is tied to the body’s cell waste disposal system, which acts a bit like a garbage pickup service. Cells create waste (bacteria and proteins) that are picked up and shuttled along by the lymphatic system and then processed by the lymph nodes, which act as the garbage and recycling plants in the bustling city that is your body.

Unfortunately, when these lymph nodes (or processing plants) are blocked or damaged or removed thanks to a tumor, surgery or radiation, our cell’s “garbage” starts to pile up and the limbs begin to swell. If left untreated, lymphedema can trigger a chain reaction of complications, most notably sudden, serious and recurrent infections brought on by unchecked bacteria that thrive in the trapped lymph fluid.

“Any patient who has a tumor or surgery that disrupts the lymphatics under the arm or adjacent to the neck or in the groin may end up with edema of the extremities,” said Dr. Gary Lyman, researcher and breast cancer oncologist with Fred Hutchinson Cancer Research Center and its treatment arm, Seattle Cancer Care Alliance.

“It can be relatively mild to quite severe,” he said. “It’s unsightly, puts patients at increased risk of recurrent infections and pain and quality of life can be dramatically affected.  Most breast cancer patients today don’t develop severe lymphedema but it still occurs and when it does, it’s a major life event and a lifelong event.”

Fortunately, lymphedema isn’t all that hard to manage if caught early.

Experts say those at risk should first and foremost protect their skin from cuts and scratches, i.e., don’t go blackberry picking without long sleeves, use bug spray so you don’t get insect bites and don’t try to pet the cranky neighborhood cat. If it’s really hot out and you’re having a “flare” – your arm starts to feel hot and tight and somehow bigger – avoid anything that would aggravate it further like strenuous gardening or pushups.

In other words, listen to your body and learn the subtle symptoms so you can nip the condition in the bud. If you notice any signs of swelling, contact a lymphedema therapist.

Seattle Cancer Care Alliance physical therapist Carol Baltaxe

SCCA physical therapist Carol Baltaxe said if patients don’t have compression, the lymphedema will „slowly get worse over time.“ Baltaxe and her colleagues try to connect patients whose insurance doesn’t cover compression garments with additional resources. Patients can also get assistance through the National Lymphedema Network.

Photo courtesy of Carol Baltaxe

Subtle symptoms

Lymphedema usually starts with an arm or leg simply feeling “heavy” or “tight.” As it progresses, the arm or leg (or hand/foot) will slowly swell, rings or watches may suddenly seem too small and shoes may not fit. The limb may also ache, become less flexible or even itch. Without treatment, the swelling will become more pronounced and the chance of infection from even a small cut or scrape will skyrocket.

Red, blotchy skin; pain in the lymphedema limb, and fever and chills are all signs of infection. And bacteria can enter the bloodstream from anywhere in the body and travel to the lymphedema area, say experts.

“We had a patient who was getting infections every three months and we discovered she was getting dental work done and bacteria were being introduced through her gum line,” said Sue Frohreich, a physical therapist with SCCA. “She started doing a preventive prophylactic antibiotic the morning of her dental appointments and never had an infection again to my knowledge.”

Anywhere from 6 to 63 percent of breast cancer patients develop lymphedema (depending on the study you read), most as a result of radiation and/or the surgical removal of lymph nodes (obesity exacerbates the condition possibly due to excess inflammation). A joint Fred Hutch/NCI study that followed breast cancer patients for 10 years found 29 percent went on to develop lymphedema anywhere from two weeks to 11 years post diagnosis.

As for other cancers, a 2010 meta-analysis found that the overall incidence of lymphedema was 30 percent in sarcomas; 20 percent in gynecologic cancers; 16 percent in melanomas; 10 percent in genitourinary cancers and 4 percent in head/neck cancers.

“Anyone who has had lymph nodes removed or radiated should be seen by a lymphedema therapist even if they don’t have swelling to get educated about the signs and symptoms and the things they can do to reduce the risk of getting it,” said physical therapist Carol Baltaxe, also with SCCA.

Treatment options include lymphatic drainage massage, compression and, more recently, surgery. Exercise – done correctly (patients should discuss this with a physical therapist or other lymphedema expert) – is another effective way to manage symptoms.

“Being active can actually help stimulate the lymphatic system,” said Frohreich. “As long as they do slow progression, it doesn’t increase their incidence of lymphedema.”

Cervical cancer survivor Cindy Alsobrook

Cindy Alsobrook developed lymphedema in her left leg shortly after going through surgery, chemo and radiation for cervical cancer. „I used to walk three to five miles a day. Now, walking four to five blocks to the grocery store is about all I can do.“

Photo courtesy of Cindy Alsobrook

Rude stares and repeated infections

Seattle cancer survivor Cindy Alsobrook, 42, developed lymphedema in her left leg shortly after she finished surgery, chemo and radiation for cervical cancer in December 2013.

“I had surgery to remove my ovaries and Fallopian tubes and they took 32 lymph nodes because they were looking cancery,” she said. “So my lymph system had quite a few nodes removed and then the radiation went in and fried what I had left. “

As a result Alsobrook’s left leg has doubled and even tripled in size and she’s suffered repeated cellulitis infections and one hospitalization.

And those are only the physical symptoms. The condition also carries a heavy psychological burden.

A former preschool teacher who’d just launched a new career in retail, Alsobrook was forced to give up her job. She routinely deals with stares and rude comments from strangers. Thanks to lymphedema, she can’t exercise, wear her favorite clothes or even go for a walk without feeling its effects.

“I spend a lot of time lying on the couch watching movies or reading now,” she said. “I used to go roller skating. I used to walk three to five miles a day. Now, walking four to five blocks to the grocery store is about all I can do. And I’m much slower than I used to be. I’m getting lapped by grandmas with their walkers. I miss skinny jeans and cute shoes something terrible. Even things like yoga pants can be difficult. To get the big leg to fit, the skinny leg is swimming.”

Lymphedema infographic

Delayed diagnosis

While Alsobrook was warned about lymphedema both before and after surgery and radiation, experts say this isn’t always the case.

“There are definitely information gaps out there in the medical community,” said Sam Roth, patient and outreach coordinator with the National Lymphedema Network, based in San Francisco. “People come out of cancer therapy or surgery with very moderate lymphedema and if they’re not educated on basic risk reduction and practices, they can exacerbate it.”

Those at risk, for instance, may want to avoid the heat, wear a compression sleeve when flying and avoid putting extra weight, strain or constriction on their affected limbs, he said. (For more tips, click here.)

Cancer patients should also be aware that lymphedema is commonly misdiagnosed by general practitioners.

“I remember one patient who kept hearing the diagnosis that she was retaining water,” said Roth. “This happens to a lot of patients. Unfortunately, she was misdiagnosed for years. She was in tears when she finally talked to us. The swelling in her legs had gotten so bad that part of her skin was hanging down like an extra appendage.”

The earlier you catch it, the more manageable it is, Roth stressed, “but just getting a diagnosis and getting recognition of it is difficult.”

A new process at SCCA should make diagnosis easier.

“We’re going to start doing pre-surgical baseline arm measurements in breast cancer patients so we’ll know when we start to see signs of swelling earlier,” said Baltaxe.

Lymphedema and the law

But even if lymphedema is diagnosed early, treatment may not be covered by insurance.

Both Thomas and Alsobrook went without custom compression garments for years (and in Thomas’ case, decades) because they couldn’t afford the out-of-pocket costs. Thomas’ one custom-made sleeve and glove cost $1,000 (she wore it out years ago and never replaced it) and the single custom leg compression garment Alsobrook saved for months to buy ran $1,700 (most patients require a pair of compression garments every six months for each affected limb).

Without compression, the lymphedema flourished.

“I feel like the insurance could have saved a lot of trouble and money if they would have just given me custom compression garment from the beginning,” said Alsobrook, who is on Medicaid. “I feel like I would have been able to return to work if it hadn’t gotten to the stage it is now. I’ve got permanent tissue damage going on now and I can only get it to go down so far.”

Baltaxe, who often chases down resources for patients like Alsobrook, said the current lack of coverage for compression garments “doesn’t make any financial sense,” pointing to a 2009 study that showed women with breast cancer-related lymphedema (BCRL) incurred an average of $7,000 more in health care costs per year than those without BCRL.

“[Compression] is a minimal cost for an insurance company,” she said. “And it’s a lot cheaper to have a patient in a compression garment than to pay for the cost of IV antibiotics or hospitalization.”

A bill known as the Lymphedema Treatment Act, sponsored by Washington State Rep. Dave Reichert may help change that. The bill, a patient-driven grassroots effort, is under consideration by two House committees.  Its aim, according to the LTA website, is to “improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies.” Changing the Medicare law could set a precedent for Medicaid and private insurers to follow..

Lyman, co-director of Fred Hutch’s HICOR group, which helps to identify the best value in cancer care, said the proposed change in law is a “no-brainer.”

“There is absolutely no reason why the Centers for Medicare & Medicaid Services should not reimburse the cost of a sleeve for any patient with lymphedema,” he said. “It’s controlling the symptoms, it’s non-toxic and it’s not expensive.  I don’t understand any rationale for not reimbursing for compression. It only takes a few patients with a $100,000 hospital bill to more than offset what they view as cost savings by not preventing infections with a compression sleeve.”

Thomas, who knows others who’ve been diagnosed with breast cancer and lymphedema, said compression makes all the difference.

“It would have been a different story if I had not gotten the cellulitis,” she said. “[A family member] has breast cancer and she got a sleeve recently. I can hardly see the swelling, but I know they can tell when there’s lymphedema there. I’m really grateful she got it taken care of so soon. It’s not going to be as bad an issue for her.”

HOW TO TREAT IT:

  • Manual lymphatic drainage: This specialized type of skin massage mobilizes and moves built-up fluid to areas of the body where it can be absorbed.
  • Good skin care: Maintaining healthy skin through scar care, moisturizing and careful shaving is important for avoiding infections. Even a small cut or scrape can potentially lead to problems because of an inefficient lymphatic system.
  • Exercise: Some patients believe if they don’t move, they won’t swell, but the opposite is true. We move fluid by pumping our muscles, so being active is very, very important. Precautionary steps must be taken to not aggravate lymphedema, but the benefits outweigh the risks.
  • Compression: If limbs are swollen, they must be compressed. Special types of bandages are initially used in physical therapy to reduce swelling and then patients are fitted with a compression garment to maintain reductions. Compression is an important key for treating lymphedema.
  • Surgery: In recent years, new surgical procedures such as lymph node transfer have been developed that provide relief from swelling and discomfort and generally make lymphedema easier to manage.

We encourage all cancer survivors to be proactive in learning about this condition. With help, you can learn strategies to be able to manage it on your own.

From “Coping with lymphedema,“by Lexi Harlow and Sue Frohreich, Seattle Cancer Care Alliance Physical Therapy Clinic

Has lymphedema affected your life? Tell us about it on Facebook.

Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at dmapes@fredhutch.org.

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Autor: monica boersch

Vor ein paar Jahre bin ich an Krebs erkrankt, bedingt durch meine Wertheim OP, Bestrahlung und Afterloading habe ich Lymphödeme bekommen, für mich sehr überraschend da ein paar Jahre dazwischen lagen, ich wusste das etwas nicht stimmt aber leider konnten unzählige Ärzte nicht helfen. Hier ist es auch so, wie in viele viele andere Länder auch, dass Lymphatische Erkrankungen erstens nicht wirklich ernst genommen werden und zweitens das kaum ein Arzt darüber Bescheid weiß, wie den auch, wenn in den Lehrbüchern so gut wie NICHTS steht. Mein Bestreben ist alles zu tun was in meiner Macht steht um dafür zu sorgen das jeder der betroffen ist weiß was er/ sie tun kann um sein Leben wieder so gestalten zu können wie er/sie das möchte. . Ich suche und suche immer weiter nach alternativ Möglichkeiten um meinen Leben so normal wie möglich zu gestalten. Die Empfehlungen die ich gebe sind bei mir durchaus wirksam und ich erziele gute Erfolge und behalte meine Lebensqualität. Mein Blog ist kein Ersatz für eine Ärztliche Betreuung und ich empfehle jeden mit seinem Arzt über Therapie Möglichkeiten etc. zu sprechen. Ich kann nur anregen und durch meine eigene, persönliche Erfahrung eventuell einen weg aufzeigen. Seit 2009 beschäftige ich mich weit über das übliche hinaus mit Lymphödeme. Nicht nur die „Diagnose“ interessiert mich, sondern ebenso was für einen Effekt es hat auf unser Sozialleben und unser Selbstwertgefühl. Ich habe viel Zeit und Geld investiert in andere Länder zu reisen um alternativen kennenzulernen, ich war bei Internationale Firmen als Gast um zu sehen welche Lösungen geboten werden, habe fast jeden Lymphologischen Kongress besucht um mich weiter zu bilden und einige Projekte als Freelancer machen können. Wie ihr sieht ist das weitaus mehr als nur ein Blog, es müssen sich grundliegende Dinge verändern um uns alle das zu geben was wir verdienen, Respekt, Empathie und das Bewusstsein das wir nichts Vorübergehendes haben, sondern das dieses ein Teil unseres Lebens ist und auch bleibt. After being diagnosed with Cancer and going through treatments, Wertheim operation, radiation therapy and afterloading I was suddenly hit by Lymphedema. Totally surprising since nobody even gave me a hint that this could happen. Running from one doctor to the other trying to find out what is wrong with me and why my body was changing so quickly, once again being in the situation of not having control of anything. This made me so angry that I started studying like crazy, I wanted to find out why we are left alone, why doctors don’t have a clue (sorry, most doctors) about Lymphedema and the consequences in all aspects of our lives. Sadly, I had to realize that hardly anyone knows anything about it. I started my quest to find alternatives in treatments, I traveled around the world investing my time and money, fortunate enough to spend time in companies specialized in Lymphedema treatment to learn all that I could and can. I hardly miss any Lymphatic congress, listening to the internationally known doctors, discussing what is important for us as patients. I have done some freelance work for the companies that I believe in and had the chance to work with a wonderful company in New Jersey. I have tested alternatives and I am still searching and studying because it is my quest to change things for all affected by this, not only our physical wellbeing but most importantly the impact that it has on our daily life. It’s not something that’s going to go away, it’s with us until the end and the minimum that we can expect is being taken seriously, respect and empathy for our situation and the importance for all of us that have the possibilities to change things for the better. There is so much work to do, and I am not going to give up. As you can see this is more than a blog. If you find something interesting on Lymphfantastic but you are having problems with the German, then just send me a message and I will be happy to translate that for you, my native language is English so that is no problem. Have a great day and looking forward to hearing from you soon. Bless you all, Monica

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