Proactive > Reactive Lymphedema Care: Don’t Wait for the Swelling to Start
From the Sunday Self-Care Chronicles | 6/1/25
This week’s Sunday Self-Care Chronicles explores how proactive lymphedema care can make all the difference and why too many people are still left in the dark.
This week’s issue touches on:
✨ Three real client stories that show the contrast between reactive and proactive care.
✨ Why lymphedema is often misunderstood, dismissed, or not discussed early enough.
✨ How education, self-care, and advocacy can reduce risk and increase confidence.
Read the full email below - and if something speaks to you please feel free to comment, share, or reach out!
Hey gorgeous.
This week, I want to talk about one of the clearest examples I know of how proactive care can change someone’s experience of survivorship and one of the things I get most fired up about:
Lymphedema risk.
If you’ve had lymph nodes biopsied or removed or received radiation therapy as part of your breast cancer treatment, then you have a risk of developing lymphedema in your lifetime. While it can be managed well when caught early, it’s often overlooked until it’s progressed.
And despite knowing that these risk factors exist, breast cancer-related lymphedema is the perfect example of how proactive vs. reactive care can be the difference in empowered living or living with another chronic side effect.
There's a reason why I titled my e-book on lymphedema risk “Breast Cancer's Best Kept Secret”.
Most people aren't given the education they deserve when it comes to their breast cancer-related lymphedema risk.
As a practicing oncology massage therapist for the last 13 years and a Certified Manual Lymphatic Drainage Therapist for the last 8 years, I have seen and heard too many stories of people who didn't even know about lymphedema until they already had it.
Most people aren’t told what signs to watch for.
They don’t know what heaviness in the arm or fullness in the breast can mean.
They don’t realize that a little aching, tightness, or stiffness could be early signs of lymphatic congestion. They assume it will be obvious if something is wrong and they don't understand the full impacts of what it means once it happens.
By the time they end up in my office, they’re often angry, overwhelmed, and wondering why no one warned them.
So now I want to tell you about three different clients.
CLIENT ONE.
Leslie* came in during active treatment.
She hadn’t noticed any swelling but we talked about lymphedema and she wanted to be proactive.
At my suggestion she requested a baseline consultation with the lymphedema clinic at our local cancer center (I invite all of my clients to do this) so that she could have measurements taken and get some basic self-care education that would be covered by her insurance. It also put her in a position to have her team ready if she should start to have a problem.
In the meantime we focused on easing her chemotherapy side effects and the aftermath of surgery and scar tissue.
I didn't see her for a bit as she finished her radiation and tried to adjust to her promised new normal, but when she reached out to me recently she had a level of urgency that I knew was born out of frustration.
She shared that she had twice requested a referral to the lymphedema therapists and been twice denied. She was told she didn't need to see them unless she had a problem.
Can you guess why she was reaching out to me?
Yep, she now had visible swelling in her hand on her cancer sideand was trying to figure out how to manage it.
The clinic was finally able to get her in but only after we had begun doing manual lymphatic drainage, educating her about compression, self-care techniques like dry brushing, and what else to keep an eye out for.
In fairness this was not necessarily the clinic or lymphedema therapists fault. They were also frustrated by the fact that her doctors had failed to get her in before there was a problem.
And while she is now getting the professional care she needs, as well as focusing on self-care at home with my e-book and dry brush workshop, the fact that the problem has presented means she will likely have to live with this for a while, if not forever.
CLIENT TWO.
Betty* is a newer client who came in seeking relief from fullness and aching in her treated breast.
Even though she did not have lymph nodes removed she did have four weeks of radiation following her lumpectomy.
She was never told about lymphedema nor given any basic do's or don'ts about living at risk.
When her breast became uncomfortable she went to her primary doctor who dismissed her and told her that he didn't see the difference between her treated breast and non-cancerous side and that it was just the way they were.
At the advice of her sister, who lives with significant lymphedema in her arm following breast cancer treatment,she sought out a physical therapist who started the lymphedema conversation.
While her symptoms are comparatively mild, they are still understandably frustrating as it means bras don't fit correctly and she lives with the daily discomfort.
I think the thing that sticks with me the most is how unfair it feels that she wasn't given the opportunity to take proactive carethat might have reduced her chances of being in my office in the first place.
CLIENT THREE.
Julie* is now about a year out from her treatment ending.
When she first came to me looking for pain relief from scar tissue following her lumpectomy and radiation, she couldn't get through a session without crying (honestly, it happens a lot).
The weight of everything that had happened - being diagnosed young without a family history, chemotherapy, surgery, and radiation - was catching up to her and she was struggling to adapt to a body that had gone through so much and felt different now.
As I do with all of my clients I inquired about her knowledge of lymphedema and while she had heard of it she too wasn't well-educated but was eager to learn all she could.
We talked about the basics of what she needed to know:
why she was at risk based on her surgeries and treatments
why a baseline consultation with a CLT would be valuable (luckily she got one!)
and how proactive self-care such as wearing compression, self-massage or dry brushing, and a few simple do's and don'ts could help reduce her risk
She decided to go deeper and bought both my e-book and my dry brush workshop so that she could not only understand the basics, but begin to take proactive measures to manage and reduce her risk while increasing her comfort with day to day activities.
I continue to see her regularly, and while there are still ups and downs with her recovery (aren't there always?), she generally feels more confident, equipped, and calm, now entering and leaving my office with a smile instead of tears.
She’s continued care with me and her entire team as needed, and has stayed symptom-free.
While there is no shame in any of these stories, the ideal situation is clearly Julie's experience. It’s why I do what I do.
Because early education makes a difference.
Because when you know your risk, you can respond rather than react.
Because when it comes to lymphedema, waiting doesn’t make it go away but awareness can help you manage it well.
When reactive care is the default, the result is too often symptom management instead of risk reduction.
When proactive care is the chosen path you are taking charge of your wellbeing and, while there is no guaranteed prevention, you are in a much better position to navigate your life equipped, confident, and calm, just like Julie.
💭 Something to consider:
What would it feel like to be one step ahead in your survivorship instead of one step behind?
Cancer tries to steal so much more from us than just our breasts - it takes away our control, our safety, and our choice. But proactive care can allow you to take it back.
☕️ I’d love to hear from you:
Were you told about your lymphedema risk after breast cancer treatment? If not, how did you find out? Your story might help someone else speak up or seek support.
In support of your choices and your lymph, I'm always in this with you.
ps. If you want to get ahead of the what-ifs, my e-book breaks it all down in simple, accessible language: from how the lymphatic system works, to what puts you at risk, to what you can do right now to support your body. Learn more here.
pps. *names have been changed for client confidentiality.