Despite not having any signs of lymphedema, yesterday I met with Dr. Atilla Soran, Director of the Comprehensive Lymphedema Program. I had heard he assesses risk and advises on prevention.

I made the appointment when I learned that it is possible to get lymphedema years after treatment. That scared me since that happened to a loved one. And I’m so reliant on my hands for work!

From the educational material I was given, lymphedema occurs when there is decreased lymph flow (lymphatic damage), which leads to increased protein concentration (interstitial fluid). The fluid is shifted into the tissue space due to oncotic pressure. With this fluid accumulation in the tissue space, swelling/edema develops.

You’ve probably seen women wearing compression sleeves on their swollen arms – it’s not a comfortable issue to deal with.

If not treated, the condition can lead to complications like an increased incidence of infection or skin lesions, just to name two.

Of the high-risk reasons for developing lymphedema, I don’t have a big one — which is sentinel lymph node biopsy of five or more lymph nodes as I only had one removed. However, I have a couple others, like having received radiation therapy, and “surgery and dominant hand site concordance.” 

I had two measurements to ascertain my risk. One was the L-Dex, which measures the amount of fluid in the body. It was super easy – I just stood on this scale-like machine with my bare feet and hands touching the right spots. 

The nurse also measured my limb circumference. I still have the pen markings!

And now for the results: Dr. Soran said I have less than a 3% risk of developing lymphedema!

I was told what symptoms to watch out for, like a feeling of heaviness, tightness, or swelling in the affected area. There are things I can do to reduce my risk. A large part of it is avoiding infection in that arm. I’m also to avoid prolonged pressure to the arm, which means not carrying heavy bags or purses on that side. Since it’s my dominant side, that won’t be easy! 

I go back in three months to get another L-Dex measurement, and will have another one six months from now, and then a follow up at a year. We’ll see if the numbers have changed at all and go from there.

Breast cancer, the gift that keeps on giving…