Sue Belgrade: I Wish I Had Known About Lymphedema

When Sue Belgrade overcame breast cancer she was working as a teacher in New Jersey. She underwent a double mastectomy and had 14 lymph nodes removed. “I was stressed out, exhausted, and needed to change my life to find balance and relaxation,” recalls Sue, who had been teaching for 16 years.

She and her husband decided to move to coastal Delaware where they had spent time. “It was just the change I needed – much less stress and more relaxation,” Sue said.

Upon moving to Sussex County, Sue knew she would need to transfer her care here. She immediately reached out to the Breast Health Program at Beebe’s Tunnell Cancer Center. There she spoke with Breast Health Nurse Navigator Kathy Cook who recommended Sue have an evaluation by the Lymphedema Management team, part of Beebe’s Physical Rehabilitation Services.

“I figured I would come, do some physical therapy, and that would be that,” Sue said.

However, during the evaluation by Camilla T. Carter, PT, CLT, MSHCA, CCI, Physical Therapist, Certified Lymphedema Therapist, it was discovered that Sue had lymphedema.

Lymphedema affects more than 50,000 Americans. Many of those with lymphedema have also had breast cancer.

The National Lymphedema Network defines lymphedema as the abnormal accumulation of high-protein fluid just below the skin. This accumulation causes swelling or edema in arms or legs, but it may also occur in other parts of the body such as breast, trunk, head/neck or genitals. Lymphedema usually develops when lymph vessels are damaged either during surgery or from an accident, from infections, or when lymph nodes are removed.

Those with lymphedema in a limb or body part may experience a feeling of heaviness, thickening of the skin; cosmetic deformity, discomfort and repeated episodes of infection (cellulitis).

“I had never had any education or information given to me about the likelihood of developing lymphedema,” Sue said. “I didn’t even realize that I should have full movement – I thought it was just as good as it was going to get.”

Carter said this is common among patients from healthcare systems who do not have a dedicated lymphedema program. “Lymphedema is more common than people think, especially for breast cancer patients,” she said.

Beebe has developed a Breast Cancer Pathway that allows breast cancer patients to meet with lymphedema specialists prior to surgery and then again after surgery. It allows the team to get an understanding of the person’s mobility before and after, as well as allows the patient to understand how lymphedema could affect her.

“I am so grateful for all the information Camilla and the lymphedema team have given me. I really don’t know where I would be without them,” Sue said.

Sue is now a walking advertisement to listen to your body.  She has progressed to independent management of her condition and she will continue to be monitored by Camilla and the Lymphedema Management team to ensure her swelling is controlled.  Sue is now an advocate for lymphedema patients, planning to become certified as a mentor by the Breast Cancer Coalition.

Since starting treatments at Beebe, Sue has joined the Beebe team as a Guest Relations representative. “The more I talk about my experience, the more I hear from people that they weren’t aware of the effects of lymphedema,” Sue said. “I feel I am doing my part to remove the stigma of lymphedema. It’s just swelling – for all these years, we have been trying to hide it. I now embrace it.”

Sue often wears a LympheDIVA compression sleeve on her affected arm. This brand of compression sleeve looks more like body art than a medical compression daily wear garment and she loves that they help start the conversation.

“The more we talk about lymphedema, the more people we can help understand it and potentially even have it diagnosed,” Sue said. “None of this would have been possible without the fantastic team here at Beebe.”

The Lymphedema Management team offers a broad variety of compression garments, including Jobst, Juzo, Medi, ReadyWrap, and TruForm, among others.

March is Lymphedema Awareness Month, so it a great time to talk to your physician if you are concerned you may have lymphedema or issues with swelling.

All cancer treatment survivors, including those being treated for breast cancer, melanoma, prostate and ovarian cancer, have the potential to develop lymphedema. Breast cancer survivors can be at a higher risk for developing lymphedema and 100 percent of patients treated for neck and head cancer will develop the disease, according to the Lymphatic Network. Physical trauma can also result in lymphedema, a major cause of lymphatic disease among our wounded veterans.

For more information about Beebe’s Lymphedema Management program, call (302) 645-3010, Ext. 2424 or go to www.beebehealthcare.org/lymphedema.