Using my lymphedema for good: A NEW information paper for patients at-risk

I was diagnosed with stage III breast cancer when I was 21 years old. Because I was so young and the tumor was large and fast growing, I was treated very aggressively. I had eight rounds of rough chemo, bilateral mastectomies, reconstruction, and radiation. A PET scan showed early on that I had two infected lymph nodes, one in my axilla (armpit) and one under my clavicle, so I was told that I would need a full lymph node dissection and an extra radiation field to my axilla.

Because of these factors, my chances for lymphedema were high and I was sent for lymphedema screening after surgery. Both of my arms were measured for baselines and I was taught about lymphedema. I was read what seemed like a long list of things I would never be able to do again and it crushed me. I remember sitting on the sofa at my parents’ house crying to my father about how terrible lymphedema sounded and how I never wanted it. My plans to get through radiation and move on with a normal life seemed to get further and further away.

I have often thought about how upsetting my initial lymphedema education session was, but was never sure what to do about it. When I talk to patients, I try to explain the reasons behind many of the risk reduction practices, and attempt to make it less terrifying for them. However, it wasn’t until this past September at the NLN conference that the idea finally came to me. I was sitting in a session about Risk Reduction that my good friend, Sarah Stolker, MSPT, CLT-LANA, was teaching and heard her explain that many of her patients react the same way. I realized that I wasn’t alone in this knew I needed to work on the delivery method.

The information needed to be presented in a positive manner! In a way that would encourage safe behaviors and highlight the uses of education and a good working relationship with your medical team. It took me a few tries to figure out the best approach for presenting the info, but I finally figured it out. I am proud to say that it received the stamp of approval from the NLN’s Medical Advisory Committee last week!

This is one of the projects that makes me grateful that I have lymphedema. If the new paper can make the knowledge of lymphedema easier for even just one patient, I will know I accomplished my goal. (Keep in mind though, these healthy habits are good for those with lymphedema as well!)

You can download it here along with the NLN’s other position papers.

I hope that you like it as much as I do!

Best,

Robin

3 thoughts on “Using my lymphedema for good: A NEW information paper for patients at-risk

  1. patty says:

    ok I have this crap was told about amonth ago. hate this. I already had problems with my right leg and right hip area.. then I get this stuff. nobody can tell me how I got it, I have no cancer no surgery.i have it in both legs and feet..

    Like

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