🦵🏽 The Side Effect No One Warned Me About — And Why I'm Done Hiding It
Sep 04, 2026
I almost didn't pack a bathing suit for my recent trip to Costa Rica 🇨🇷.
I was standing over my suitcase, holding up several swim suits that I had purchased for my prior trip to Gulf Shores, Alabama. I had been mortified to see how large my right leg was when a friend had taken photos of me cavorting on the beach there. And so I made a decision — I was never going to wear a swim suit ever again. But here I was invited by my dear family friend on an all-expense luxury vacation to Costa Rica. As I held the swim suits I mulled: who would see my right leg? What would they think of the swelling? Wouldn't it just be easier to stay covered up and out of the oceac?
The swelling I have is called lymphedema. Listen, I have lived with this for over 13 years now. But this past July and August was the first time I had been on a beach vacation and had to be in swim wear.
For a moment, standing there, the embarrassment won. Then I got honest with myself. I had been invited to Costa Rica. This destination has been on my bucket list for years. I have survived cancer three times. Who cares about a right swollen leg, I asked myself. I had earned that ocean.
📣 What lymphedema actually is
Your body has a drainage network called the lymphatic system. It moves fluid, filters waste, and supports your immune defenses. Cancer treatment — surgery that removes lymph nodes, radiation that scars them — can damage that network. When the fluid loses its normal path, it collects. Usually in an arm or a leg. That swelling is lymphedema.
Lymphedema can be the consequence of the very treatments that saved our lives. It is common. And it is nothing to be ashamed of.
❓Why it happens to so many of us — and gets missed so often
Most people are familiar with lymphedema as arm swelling after breast cancer. Research suggests roughly one in five breast cancer survivors develop it, and the risk can keep rising for a couple of years after treatment.
But it can also happen in the leg — and that version is where my story lives. Leg lymphedema is especially common after gynecologic cancers like ovarian, uterine, cervical, and vulvar. By some estimates, a third or more of survivors of certain gynecologic cancers are affected. And because leg swelling gets so easily blamed on age, weight, or "just being on your feet," it is frequently overlooked and under-diagnosed.
The known risk factors are fairly consistent: the number of lymph nodes removed, radiation to the area, slow wound healing or infection, and a higher body weight. Knowing your own risk is something worth raising directly with your care team.
And here's the part that catches people off guard: lymphedema doesn't always show up during treatment. It can appear months, even years, after you've been told you're "cancer-free."
🪧 The signs worth paying attention to
You need to pay close attention to your limb. Early attention is one of the biggest factors in how manageable this becomes. Here are some of the things you need to watch for:
- A feeling of heaviness, fullness, or tightness in a limb
- A ring, watch, waistband, or shoe that suddenly fits differently
- Swelling that doesn't fully settle overnight
- Skin that feels tighter or looks puffy in one arm or leg but not the other
If any of that sounds familiar, don't wait, and don't let it be dismissed.
🤔 What actually helps
Learn what you need in order to live with lymphedema.
Ask for a certified lymphedema therapist. These are specially trained clinicians — often physical or occupational therapists — who provide the gold-standard care sometimes called complete decongestive therapy: specialized manual lymphatic drainage, compression, guided movement, and skin care. You can ask your oncologist or primary care physician for a referral by name.
Protect your skin and keep moving. Because the immune drainage in that limb is compromised, careful skin care and infection prevention matter more than usual. And gentle, consistent movement genuinely helps fluid circulate — this is about circulation, not punishment.
Have the honest conversations. Weight, risk, symptoms, worries — none of it deserves shame, all of it deserves strategy. Bring it to your team, and if you're brushed off, ask again.
💡 The part that isn't about the leg at all
Here's what I've come to understand. Yes, lymphedema is disfiguring, and for me it's reminder of what cancer has left me with. And so I button up my emotions, put on the long pants even on a hot day in July and convince myself that there is still so much to be grateful for- all this is true.
For survivorship there is never a finish line. It's the rebuild. And you are allowed to do it in the light.
Not covered up, not shrinking, not apologizing for a body that carried you through something most people can't imagine.
That moment at the suitcase is why I'm launching the CLEAR™ Survivorship Institute.
The program is designed to shine a light on the parts of surviving that no one prepares you for — the physical, the emotional, the return to work, the slow rebuilding of a self — and to walk that road alongside the women living it.
I'm starting by telling my own story out loud. Lymphedema today. A great deal more to come...
Here's the truth the woman who ran the company, raised the family, and beat the diagnosis should not have to hide her leg due to lymphedema at the beach.
In the end I packed the suit and I had a blast in Costa Rica! If you are a woman living with lymphedema, I hope you pack yours.
Follow along this September as I introduce the CLEAR™ Survivorship Institute, one honest story at a time. And if this reached you, share it with a survivor who needs to read it today.
🎬 Ready to rebuild — with support built for survivors?
I'm currently accepting clients. Let's talk about where you are and where you want to be — or save your place for what's coming next.
This article is for education and information purposes only, and does not constitute individual medical advice. Please talk with your own care team about your health. To learn more about lymphedema, the National Cancer Institute (cancer.gov) is a reliable, place to start.
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