Living with Lymphedema
As a breast cancer survivor, Mary-Ann Browne admits that beating the cancer was the easy part. The real challenge for her was learning to live with lymphedema, a side effect of the cancer treatment that ended up changing her life.
When Browne was diagnosed with breast cancer in January 2002, she was working as a nurse at the Montreal General Hospital. Over the following months, after a lumpectomy involving the removal of several lymph nodes, she then underwent dozens of radiation and chemotherapy sessions.
About five months later she experienced swelling in her arm that she brushed off as a side effect of the surgery, but which she later discovered was something much more serious – lymphedema.
Characterized by localized fluid retention and tissue swelling, lymphedema is brought on by a compromised lymphatic system, common in patients who have undergone surgical procedures, the removal of lymph nodes, or radiation therapy for the treatment of various cancers. Any part of the body can be affected: the arm and shoulder, legs, trunk or abdomen and genital area, depending on the part of the body that was treated. Breast cancer is most commonly associated with this condition because of the need to treat axillary nodes with surgery and/or radiotherapy. Other cancers that can cause lymphedema include gynecological cancers (uterus, cervix, ovary) and melanoma.
“At that point, you just go from day to day to day. Your body is so abused, you start to feel like a ping pong ball,” Browne said. “Being diagnosed with lymphedema was just one more thing you know you’ll have to deal with, but I never realized what a huge impact it would have on every aspect of my life. With the cancer, you can deal with it and try to move one. But with lymphedema, it’s a daily reminder and it’s there forever.”
The condition had such an impact on her life that she was forced to retire early at the age of 61. Unfortunately, Browne isn’t alone. Each year, up to 25 per cent of the 6,000 Quebec women diagnosed with breast cancer will develop lymphedema.
“Left untreated, lymphedema can swell body parts up to two or three times their normal size, causing pain and producing huge skin folds and elephantiasis,” says Dr. Anna Towers, director of the McGill University Health Centre’s Lymphedema Clinic located at the MUHC’s Vendome site.
“It can also cause permanent skin changes, hardening of the tissues and cellulitis, and in severe cases it can lead to lymphangiosarcoma, a rare and deadly form of cancer. And these afflictions do not even touch upon the devastating psycho-social effects of this disfiguring condition.”
What are the symptoms?
Lymphedema may develop within a few days or few years after cancer treatment. While diagnosis can be difficult, early detection is key. Some signs to watch for in the limb at risk (most commonly an arm or leg) include:
- Feeling of puffiness or heaviness
- Decreased flexibility of movement
- Swelling occurring gradually or suddenly
- Tightness, hardness or indenting of the skin when pressed
- Achiness, or bursting or shooting pain
- Difficulty fitting your arm into the sleeves of your shirt or your leg into your pants
- Increased swelling on hot, humid days or after exertion
- Tight-fitting jewellery (including watches) even though your weight hasn’t changed
While there is currently no cure for lymphedema, it can be effectively managed by a number of different treatments.
- Combined Decongestive Therapy (CDT) is currently considered the most effective treatment available and should be administered by certified CDT therapists. It is a four-part process that helps control the amount of swelling in the affected area and consists of manual lymph drainage (MLD), compression bandaging, decongestive exercises and skin care. Once the swelling is reduced, the person is prescribed a compression sleeve or stocking to maintain the limb in this improved state.
- Decongestive Exercises can be performed to alleviate and prevent the swelling. In consultation with a trained therapist, physical activity including stretching, aerobic exercise and strength training can be done to successfully manage lymphedema. It is highly recommended to consult with your physician or lymphedema therapist in order to determine the appropriate level, frequency and duration of activity for your needs.
- Compression Bandaging consists of wrapping layers of gauze, foam and low-stretch bandages applied for a period of 2-4 weeks to help the body’s muscles stimulate lymph flow and to reduce the swelling prior to being measured for a compression garment. At first, this technique is carried out by a trained therapist, but as with manual lymph drainage, it can be taught to patients and their family.
- Manual Lymph Drainage (MLD) is a specially tailored and gently pressured technique that differs from a traditional massage. This method helps to stimulate the lymph flow and redirect lymph fluid to areas of the body where the lymphatic system is properly functioning. Under the supervision of a trained therapist, MLD can be taught to patients and their family members.
- Compression sleeves or stockings are prescribed by a physician and obtained through special fitters.
In addition to the physical challenges, dealing with lymphedema can lead to a rollercoaster ride of emotional and psychological effects involving every aspect of one’s life, including family and friends.
For Browne, the new reality she faced of living with lymphedema hit her following her first return home from the hospital after being fitted with a compression bandage for her arm, which covers the entire length up to the armpit.
“While I was driving home I felt like there was a big neon sign over my car saying ‘look at me’,” she recalled. “I literally felt like I was wearing the stigma of a chronic condition on my arm.”
Browne said she struggled with the new reality of her diagnosis, including the unexpected challenges of trial and error in discovering the perfect fabric for her bandage, the most competent fitter and covering the $550 cost.
She has since grown accustomed to wearing her better-fitting garment daily, but admits there are some days when she feels angry and, out of spite, occasionally won’t wear the sleeve and glove. She refers to those days as her “holidays”.
“You just feel ugly. You can’t go out to eat finger foods at a restaurant without putting a rubber glove on to protect your garment,” she said, adding she tried a pair of fancy black gloves, but found they resulted in even more embarrassment and attention. “Now a standard beige colour is fine as I have accepted the reality of a chronic lifelong condition.”
But in learning to cope with lymphedema over the years, Browne was able to rely on the supportive services of the MUHC Lymphedema Clinic.
The MUHC Lymphedema Clinic – at the forefront of care
As the only specialized medical clinic for lymphedema in Quebec and the Atlantic provinces, the MUHC Lymphedema Clinic provides patients with assessments, consultations and referral services.
The clinic currently operates one day a week, receiving 10-12 patients during a regular business day. Under the careful and dedicated watch of Dr. Towers, the clinic follows as many as 950 patients, most of whom have complex issues It offers an interdisciplinary service, including a lymphedema-trained physiotherapist, an exercise trainer and a volunteer from the Lymphedema Association of Quebec.
Patients are assessed and provided with a rehabilitation plan. Those requiring intensive treatment are referred to community therapists for Combined Decongestive Therapy and have to go to private suppliers for compression garments – since these garments are not covered by Medicare. Patients are typically followed every three months until their lymphedema is controlled, and then are seen annually thereafter.
“For the hundreds of courageous people in our community who have survived or are still battling the ravages of melanoma, breast, uterine, prostate, vulvar, or ovarian cancer, lymphedema is a horrible consolation prize,” says Dr. Towers. “As one of the various clinics specializing in support for cancer patients and their families at the MUHC, the Lymphedema Clinic strives to provide information that will help improve rehabilitation services to those suffering from this condition.”
The work of Dr. Anna Towers and her team has been instrumental in keeping the MUHC at the forefront of research and treatment related to lymphedema, and translating that into improved patient care and enhanced quality of life for cancer patients and survivors.
Browne is living proof as she credits Dr. Towers and the clinic for helping her get back to a more normal version of her life. The clinic has helped with everything from proper bandage fittings to choosing proper exercise regimens as well as providing educational sessions and networking opportunities.
“I attended everything they offered and they offer a lot,” she says. “It’s a marvellous clinic – a leader in Quebec thanks to Dr. Towers – we’re so fortunate to have her and the clinic’s numerous dedicated volunteers.”