After she had breast cancer surgery in 1995, no one told Elaine Dohms she shouldn't have an injection in her arm where lymph nodes had been removed to detect whether the cancer had spread.
"They gave me an injection in that arm and all of the sudden, everything started swelling," she said.
"If someone had said never, never let them do an injection, blood pressure test or an IV in that arm, I would have been more vigilant."
Dohms developed lymphedema, a condition that causes blockages of lymph, a colorless fluid that circulates through the body as part of the immune system. When lymph nodes are removed or damaged, the normal flow of lymph can stop.
For breast cancer patients, it usually accumulates in the arm, causing painful swelling and a higher risk for infection. As untreated lymphedema progresses, the arm can become huge and severely disabling.
Eighty percent of lymphedema cases in women who develop the condition occur within three years after breast cancer treatment, according to the National Cancer Institute.
But too few women are counseled about the possibility of lymphedema after breast cancer treatment and how to be alert for warning signs, said Dohms, an oncology massage therapist.
"If you have any problems, you need to see a doctor right away and insist they get you treatment. I wouldn't settle with saying my arm is hurting and being told I just have to live with it," said Dohms.
Dohms works with lymphedema patients at the Lymphedema Healing Center, which is part of the Kinesia Rehabilitation Group in Sarasota.
"There is a lot that can be done, even for the worst cases," said Dohms. "It can be very empowering."
Dohms teaches women how to physically manipulate accumulated lymph to restore flow. Optimally, the technique, called manual lymphatic drainage, is done daily. It takes about 10 to 20 minutes, said Dohms.
Exercise is important, too. Doctors once believed that women with lymphedema shouldn't exercise or lift heavy objects. But exercise that progresses slowly is now considered to be helpful. It's recommended that women with lymphedema wear a compression sleeve when exercising and consult with a certified lymphedema specialist to learn what's safe and what isn't.
Regular use of compression sleeves can help keep lymphedema in check. The garments can be custom-fitted or purchased off the shelf. Wearing compression garments during air travel is recommended.
And meticulous skin and nail care of the affected arm is essential, said Dohms. Even a small infection can be trouble for anyone with lymphedema. She tried to discourage manicures at nail salons but if women insist she recommends taking their own nail instruments.
The rate of extreme cases may be less because of minimally invasive breast cancer surgery techniques that spare lymph nodes. However, despite higher use of less invasive surgery, the National Cancer Institutes predicts lymphedema will remain as a potential side effect far into the future.
"I used to see really bad complications but fortunately that's much rarer," said Lisa Merritt, a physician and rehabilitation specialist at Kinesia Rehabilitation Group.
Merritt is the founder of the Multicultural Health Institute in Sarasota that is working with a grant from the National Lymphedema Network for educational outreach to minorities.
Most African-American women with breast cancer need to have lymph nodes removed because of progression of their cancer. This makes them susceptible to lymphedema.
"Some women don't even know they could be at risk," said Whitney Kitchens, co-owner of Uniquely You, a specialty boutique in Bradenton that offers post-mastectomy bras and other products.
Kitchens is learning more about lymphedema from Dohms and now brings up the subject with her clients.
"If you know the warning signs, you can do something about it," said Kitchens.
"For every woman who comes through our doors, we talk about it."
SIGNS OF LYMPHEDEMA
The American Cancer Society lists these signs of lymphedema:
Swelling in the breast, chest, shoulder, arm, or hand
Part of your body feels full or heavy
Skin changes texture, feels tight or hard, or looks red
New aching, tingling, or other discomfort in the area
Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
Trouble fitting your arm into jacket or shirt sleeves
Your bra doesn't fit the same
Your ring, watch, and/or bracelet feels tight, but you haven't gained weight
Early on, the skin usually stays soft and raising your affected arm might relieve the swelling. But over time, the swollen area may become hot and red and the skin hard and stiff.
Susan Hemmingway, Herald health correspondent, can be reached at email@example.com.