"How about we deal with it if it happens?"
From the Sunday Self-Care Chronicles | 7/26/26
Hey sweet friend.
It's funny, the memories that surface after such a long time.
This week I had a flashback to sitting on an examination table in my pink paper gown during a follow-up with my surgeon.
I was still relatively early in my recovery from a double mastectomy and sentinel lymph node biopsy, and I was determined to ask a question I already knew the answer to, hoping for her confirmation and support.
"I'd like to know about my lymphedema risk, and whether I could get a referral to a lymphedema therapist for a baseline appointment."
I watched her face as she gave a barely audible sigh and a subtle side-eye, and kept her attention on my incisions.
"I don't think you really need to worry about that. You only had a sentinel node biopsy, so how about we deal with it if it happens. Let's focus on your recovery and what needs to come next."
I wanted to argue, to put my professional hat on, to explain that I AM a lymphatic therapist, that I've seen what happens when we "deal with it if it happens," and to explain why this mattered so much to me.
But I felt vulnerable, sitting naked, wrapped only in paper, and so easily dismissed by the "professional" in the room.
So I nodded, and swallowed all of my thoughts and feelings to the contrary.
It was in that moment that I realized the survivorship gap often starts before we've even finished treatment.
I was lucky. I had the training to protect myself no matter what she said. But most women don't, and that dismissal is exactly what costs them: the early window when lymphedema is easiest to get ahead of, the baseline measurement that would make any future swelling diagnosable, the proactive care that quietly gets pushed off until later, or onto someone else.
And I see it all the time in my practice.
The surgeons who physically remove lymph nodes refuse requested referrals to lymphatic professionals, saying it shouldn't be a problem.
The radiation oncologists who blast lymph vessels and nodes with cell-destroying treatment, along with the remaining breast tissue, muscle, and fascia, barely recognize how it affects the lymphatic system of the person on the table.
The medical oncologists who deliver life-saving chemotherapy offer no acknowledgment that certain chemo cocktails can contribute to lymphedema, too.
Most of us go through diagnosis and treatment with a whole team assembled for the cancer, but no one focused on the body it's going to leave behind.
A few weeks ago I ran a survey, and half of you who answered told me you're not living with a lymphedema diagnosis, but it's something you think about and want to prevent. So let me give you a little of what the exam room didn't.
Here's the truth about lymphedema risk after breast cancer:
The risk is created by any damage to the lymphatic system, whether from sentinel node biopsy, full axillary dissection, or radiation.
It's lifelong. Once vessels or nodes are removed or damaged, they don't regrow or repair, so while most cases show up in the first two to three years, it can surface decades later.
It isn't only an arm-and-hand issue. It can appear in the breast, chest, back, and trunk.
And it's more common than most people are told: roughly 6–10% after a sentinel node biopsy, 20–25% after axillary dissection, and more than 30% when surgery is paired with radiation. Those numbers are likely conservative, since so many cases go unidentified or surface years later.
But most people never hear any of this. I've had person after person come to me with a swollen arm saying, "I'd never even heard of lymphedema until they told me I had it."
And the research bears out how wide the gap is.
In one survey of 141 breast cancer survivors, fewer than 25% could correctly answer more than half of the lymphedema risk-factor questions, even though 72% remembered receiving some kind of lymphedema education.
Survivors are so often left to advocate for their own education and referrals (sound familiar?).
So if I could be dismissed that easily, someone with actual training in the very thing I was asking about, how does the average patient stand a chance when they don't even know what they don't know?
Being informed didn't spare me from the survivorship gap. But it did mean I wasn't ignorant of my own risk, even when my doctors were. And that made me the best self-advocate I could be, which is exactly what I want for you.
You may remember that last week I talked about the first Fundamental of Active Healing: Time and Space. Well, this is where I get to introduce you to the second: Context and Education.
Context and Education is what stops every ache or twinge from spiraling into fear, and lets you take a beat, assess clearly, and proceed with more confidence, whether that means a relevant self-care technique or an appropriate check-in with your team.
Because here's what's going on underneath so much survivorship fear: a sensation shows up, you don't know what's causing it, and your mind fills the silence with the worst possible answer. The ache in your arm that could be from getting back to the gym, or could be…? The tightness across your chest that could be from not stretching enough, or could be…? And when you finally work up the courage to type it into a search bar, the answer never quite reassures you, but where else do you turn?
Fear and confusion thrive in the absence of understanding.
Context and Education give you a foundation to stand on when it comes to the changes you've lived through in your body.
When you understand what a sensation actually is and why it's happening, it stops being a threat and becomes information.
And it isn't just about lymphedema. It applies across everything you've been through: scars and scar tissue, tightness and restricted range of motion, aches and pains that seem to come from nowhere but have a very logical cause, and real conditions like cording and neuropathy.
The question becomes: how do you something about any of it if you don't understand it? You need to know what it is, why it happens, what to look for, how to take real steps to protect yourself, and who to call when you have a legitimate concern, not just a 2am freak-out.
This is why I build real, evidence-based education into everything I create. When you know your normal, you can tell the difference between a sensation and an emergency. That knowledge is a kind of safety you carry with you everywhere.
Tell me: what's one sensation or symptom you've been afraid to look up? You can reply just to me.
Sometimes getting brave enough to ask is the first step to taking your power back.
I'll see you next Sunday, with the third Fundamental: Professional Care.
P.S. If this stirred something in you and you're ready for the full map, As You Are Now: A Breast Cancer Self-Care Program for Real Life is where all of it lives: self-MLD, body literacy, and the skills to feel at home in your body again. Founding pricing is open through August 31st, and the easiest way to get a feel for it is my next free Ask Me Anything call, Thursday, August 20th at 12:30pm ET. Come meet me and ask anything. Save your seat here.
P.P.S. My free self-care Starter Kit is always there to forward to someone who needs it. It's heavy on the context and education.
Research Resources:
Rockson SG, "Lymphedema after Breast Cancer Treatment," NEJM 2018
McDuff et al., "Timing of Lymphedema After Treatment for Breast Cancer," IJROBP 2019