Patient tips Seven things I want others to know about lymphedema

Seven things I want others to know about lymphedema

Pako W. was diagnosed with breast cancer on her 48th birthday. At City of Hope Phoenix, she completed chemotherapy, a double mastectomy, immunotherapy, radiation, the newly released Kadcyla® treatment (an immunotherapy/chemotherapy combination) and reconstructive surgery. Here, Pako shares the things all patients should have in their toolkit when it comes to managing lymphedema.

  1. Lymphedema is different for everyone! There are different levels of severity to lymphedema (ranging from mild to extreme).
  2. Try not to compare your own symptoms with someone else’s. Immediately after surgery, follow the basic 10-step self-manual lymph drainage/massage (MLD) in the shower two to three (or more) times every day. The City of Hope rehab team gave me a laminated card to prevent any swelling or future flare-ups. I was able to hang it up in my shower for easy access and review. Some of the steps included:
    - Follow the 1-2-3 rhythm for pull/sweep movements.
    - Perform deep belly breathing with each step.
    - Repeat two to three times per day if swelling persists.
    Expect it to take about 10 to 15 minutes per session, per limb.
  3. Schedule a meeting with the PT/OT team prior to breast cancer surgery. Before undergoing surgery to remove the cancer and my lymph nodes, I met with the rehab team at City of Hope to talk about lymphedema and what to watch for post-op. They took initial measurements of my left arm, where my lymph nodes would be removed. After surgery, I saw the rehab team on a weekly basis to prevent and stay ahead of any lymphedema flare-ups.
  4. Be patient when dealing with lymphedema. Take your time in using the extremity/ies that have been affected. I was advised to start slow with two-pound weights for exercise and work up from there. Focus on your functional daily movements first.
  5. Small things may cause flare-ups. For me, this included carrying the groceries in, lifting a gallon of milk, lifting or moving boxes, etc. I jumped back into my “old” routine too fast, and my left arm swelled up, becoming tight and very uncomfortable.
  6. Listen to your body when you do have a flare-up. My go-to list included manual lymph drainage, acupuncture on other parts of my body (not the affected extremity or nearby areas) and watching for any signs of infection.
  7. Ask your care team about at-home equipment that may be right for you. My PT team recommended a machine called Tactile Medical, Flexitouch® Plus. The company nurse came to my home to measure me for compression sleeves and trained me on how to use the machine. I often used it while I sat and relaxed on my couch or bed. After consistently using the machine, my lymphedema swelling reduced to a status that was better than my initial measurement with the City of Hope rehab team prior to my surgery.

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