The Breast Cancer Treatment Side Effect Nobody Warns You About

By Catherine Brereton

Every night I bandage my wife’s arm from fingertip to shoulder. First, gauze bandages around her fingers in an elaborate, well-practiced pattern. Next, wider strips of flannel anchored around her thumb and wrapped from her wrist up to her armpit. Finally, the elastic bandaging, fastened like a gauntlet around her palm, up her arm to her shoulder, and back down in a double-layer of stiff fabric. We cut the right arms off all the t-shirts that she wears to bed to allow for the increased girth of the bandaging. After wrapping, her arm is essentially immobile; she can flex her fingers, but can’t bend her wrist or elbow. It’s an involved process; it used to take twenty minutes, but with practice now only takes five. Without this wrapping Susan’s arm will swell. Her fingers will puff until she can’t bend them, then her wrist will inflate. Finally, the swelling — which can easily increase the size of her arm, hand, and fingers by 35%, maybe more — will reach her underarm and shoulder, spreading round into her back and down to her ribcage. By this point, she’ll be in pain as her skin is stretched to capacity. She can live with the disfigurement, she says, but the pain is the worst part. There’s no relief. She has a condition called lymphedema, a side effect of her recent treatment for breast cancer.

Lymphedema is a chronic and progressive condition caused by a failure in the lymphatic system. Although it can be congenital, in most cases it happens because the lymphatic system has been compromised by cancer treatments: radiation therapy, lymph node removal, or both. When lymph nodes are removed or damaged, the body is less able to drain lymph fluid, which helps move infection-fighting white blood cells through the system. Lymph fluid pools in the affected limbs and extremities, and causes swelling, pain, and an increased risk of infection and cellulitis. Medical professionals agree about what lymphedema looks like and about its associated risks, but there is no consensus when it comes to determining the risk of developing lymphedema or what constitutes a consistent and effective standard of care. Women suffering with lymphedema must figure it out for themselves, piecing together an approach to lymphedema management often based only on trial and error. Far from empowering women to make informed decisions about their health, this lack of guidance places the burden of care — from knowledge acquisition to decision making to implementation — on the woman herself.

Susan’s breast cancer treatment was straightforward. Her bilateral mastectomy took place on June 12, 2014. After only 90 minutes in surgery, her surgeon informed me that it had been a complete success; preliminary pathology indicated that none of her lymph nodes were involved. It was the best news we could have hoped for. “Your lymph nodes are clear,” I told her, as she recovered in PACU. “The cancer is all gone.” But a week later our relief turned to panic. At her first follow-up appointment, her surgeon told us that detailed pathology had found tiny cancer cells — micro metastases — in her sentinel lymph node. He recommended an axillary lymph node dissection, during which he would remove all the lymph nodes on the affected side. Susan’s second surgery took place six days later.

The surgeon removed seventeen lymph nodes from Susan’s right armpit. All were found to be clear of cancer. Her medical oncologist decided that the micro-mets found earlier were clinically insignificant; Susan could be treated as though her lymph nodes were clear, he said, although he recommended six rounds of chemotherapy as a prophylactic measure because of her age. For the most part, Susan tolerated chemotherapy well. Still, she was often exhausted, and as the chemotherapy progressed, the side effects accumulated. When her right arm began to feel heavy and her hand looked swollen, we passed it off as another manifestation of chemo-fatigue and assumed she’d slept in an odd position to avoid lying on the power-port inserted in her chest. But the swelling continued. Susan mentioned it to her oncologist; almost instantly, he diagnosed lymphedema and referred her to a physical therapist.

At that point, we didn’t even really know that lymphedema existed. I’d taken comprehensive notes at all of Susan’s appointments — it was my way of coping — but I couldn’t find any notes about a doctor warning us of this possible treatment side effect. And other patients and families were being left in the dark, too; I’ve since lost count of the number of times we’ve had to explain what lymphedema is. This lack of awareness prevents proper, consistent care. If no one knows what it is, then no one knows to advocate for themselves or their loved ones, to ask questions, to push for answers.

Like Susan, actress Kathy Bates developed lymphedema after her mastectomy. In fact, Kathy is the public face of the Lymphedema Education and Research Network (LE&RN), and she’s spearheading a campaign to have March 6th recognized as World Lymphedema Day. She’s not the only celebrity to have developed the condition: Ingrid Bergman developed lymphedema after breast cancer treatment, and current Democratic presidential candidate Hillary Clinton is reported to have developed lymphedema after giving birth to her daughter, Chelsea. But you probably didn’t know any of this. According to William Repicci, the Executive Director of LE&RN, more people deal with lymphedema than deal with ALS, multiple sclerosis, muscular dystrophy, Parkinson’s disease, and AIDS combined. Yet no one is talking about it.

This is partly because the experts can’t agree on how big of a problem it is, or how to prevent it. Cancer Network, the online presence of the peer-reviewed journal Oncology, says the risk of developing lymphedema is somewhere between 6% and 70%; breast cancer.org says it’s between 10% and 90%. Such a vast range of risk, amounting to “somewhere between 6% and 90%,” is essentially meaningless, and indicates a troubling lack of agreement among health professionals. The fact that there’s no consensus on the risk may keep doctors from addressing the risk at all — a serious issue if it’s truly as high as 90%.

The same confusion reigns when it comes to predicting who is liable to get lymphedema, and under what circumstances. Mayo Clinic suggests that old age, obesity, and arthritis increase lymphedema risk. That may be true, but it’s not sufficient: Susan was 41, 105 pounds, and otherwise resoundingly healthy. Is the key, then, in the type of cancer treatment? The number of lymph nodes removed? Cancer Network says not. Although these are “commonly cited risk factors,” they say, “the relationship between the number of nodes removed and the risk of lymphedema is not clearly correlated.” However, breastcancer.org disagrees, stating: “having more underarm lymph nodes removed increases lymphedema risk.” So, who can women trust? The answer, it seems, is no one; when two of the major players in cancer awareness disagree about something this fundamental, the responsibility for assessing the ongoing risk of lymphedema falls squarely — and unfairly — on the shoulders of the patient.

On the subject of treatment, at least, there’s some consistency — though that’s mainly because so few treatment options exist. Susan’s physical therapist prescribed compression therapy, the only non-surgical intervention available. This involves wearing compression garments during the day; Susan dons a compression sleeve and a custom-made compression glove as part of her daily attire. At night, she is “wrapped” from fingertips to shoulder to maintain the compression levels. In addition, she practices nightly manual lymphatic drainage massage to encourage the pooled fluid to redirect to functioning lymph nodes. Surgical interventions are starting to become available — lymphatic bypass surgery or lymphatic transplant surgery — but these are costly and, mostly, still in the early stages of development.

When Susan’s lymphedema was diagnosed and considered “uncontrolled,” part of her treatment was covered by our health insurance. However, now that her condition is “controlled,” we pay the majority of costs out of pocket. This includes three kinds of specialty bandages, “off the shelf” compression sleeves, and custom-fitted gloves. Although our insurers would pay part of the cost of the gloves, the mark-up is such that it’s substantially cheaper to pay entirely out of pocket. Susan’s lymphedema care costs us around $1500 per year. The Lymphedema Advocacy Group is attempting to change insurance coverage through the introduction of the Lymphedema Treatment Act, which aims to amend a Medicare statute to include coverage for compression garments and supplies. For many, this act may well make the difference between no treatment and treatment.

For most sufferers, regardless of insurance, that treatment isn’t a cure. Unless caught at an extremely early stage — difficult because of the lack of awareness — lymphedema is permanent. It is staged and graded depending upon the severity of swelling and whether or not any cellular-level changes are present. Susan’ s lymphedema is irreversible, but with diligent attention — nightly self-massaging and near-constant compression — she’s has muscle definition, good tone, and almost the same degree of skin elasticity in her affected arm and hand as in the unaffected.

Those with lymphedema are given standard advice: don’t have blood pressure taken, blood drawn, or shots given in a limb affected by lymphedema, avoid injury or trauma to the affected limb, wear a compression garment while flying, and avoid repetitive motion. Many experts say to avoid exercise — it increases blood flow to the limb, which in turn increases lymph flow and swelling. But this, too, is unpredictable: while Susan can hold plank pose for three minutes at a time without any adverse effects, the small, fine movements involved in chopping vegetables will leave her arm heavy and sore. At the Dana-Farber Cancer Institute in Boston, Dr. Carolyn Kaelin is currently researching whether or not rowing — a highly repetitive upper-body motion that should, by all accounts, exacerbate lymphedema — might actually help instead. After her surgeries, Susan was diligent about carrying out exercises intended not to prevent lymphedema, but to preserve her range of movement. Johns Hopkins website states that “breast cancer patients who perform good skin care and exercise properly after mastectomy are less likely to develop lymphedema,” but does not indicate what constitutes good skin care and proper exercise.

So much contradictory information exists that researching lymphedema is barely helpful. The precautionary measures against lymphedema are at best vague, at worst conflicting. “Good skin care,” we came to realize, meant protecting the skin on the affected limb to such an extent that everyday living was almost impossible. How can anyone avoid the normal skin “traumas” like the occasional paper cut, hang nail, or patch of dry skin? With the benefit of hindsight, we wonder now if the patch of irritated skin that Susan developed as a side effect of her chemotherapy was the catalyst for her lymphedema. Whether it was or wasn’t, it would be easy for her to blame herself for not taking “proper” care of her skin, just as it is easy for any woman to blame herself for not taking preventative measures. The guidelines give those at risk of developing lymphedema a false hope that they can prevent it, even as they say that nine out of 10 breast cancer patients will go on to develop it anyway, no matter what they do. It’s a whole new slant on victim shaming, and one that leaves the woman bearing the cost, physically, emotionally, and financially.

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For more information about lymphedema:
The Lymphedema Guru on Facebook
The
lymphedema forums on breastcancer.org

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Lead image: Chris Conway and Hilleary Osheroff

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