Lymphedema, upper extremity following breast cancer

Posted by tullynut @tullynut, Apr 15 5:56pm

I was diagnosed with breast cancer (er/pr +, right breast only) in 2019. Mastectomy and removal of 19 lymph nodes, 4 of which were malignant soon followed. Within 6 months was diagnosed with RUE lymphedema and therapy and compression followed with little improvement over the next 15 months. Dye test showed total loss of lymph function in RUE and a VLNT was performed and succeeded by n restoring lymph action in arm. Over next 3 years progress was seen but not optimal. Different sleeves, techniques ensued. I was ableto lose another 15-20 pounds. The hand and forearm are now in good shape but elbow area shows tissue issues. For first time ever, I had 2 episodes of cellulitis (first time ever) in Dec 2023 and Feb 2024 - 62 days apart! So plan going forward is: one more episode of cellulitis will result in LVA surgery to address likely blockages around elbow (following a dye test to confirm blockages) happening sooner not later. If no cellulitis occurs going forward additional procedure at elbow will be up to me. I am 72. Good news is I NO longer need to wear my sleeve/glove. Surgeon that the compression might have contributed to my current issues. I was sleeveless for the first time in 4.5 years today! So far, no swelling. The garments were contributing to swelling in n hands and fingers. I will see how this goes over next few months and if the elbow area increases or starts to bother me I will schedule the dye test sooner than later. My arm is truly a million dollar arm!

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@tullynut thank you for sharing this important side effect of breast cancer treatment. Your generosity in sharing your story helps to remind us that there is no “one size fits all” in breast cancer. Protocols are good but there are always folks who need something different.
I am so happy for you to be sleeveless right now. How freeing that has to feel after years. I have been fortunate to only have had to wear for a few episodes of this. One of those happened because I let a nurse bully me into putting IV into my right arm for an MRI, because she couldn’t find a vein in the left.
I am sooooo excited for you! What are you doing to celebrate?

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