Expert Dr. Sheri Prentiss Discusses Early Lymphedema Risk Assessment

After practicing medicine for 16 years, Dr. Sheri Prentiss faced a life-altering turning point. A diagnosis of breast cancer-related lymphedema (BCRL) not only ended her clinical career but also thrust her into the complex world of survivorship from a new perspective: that of the patient. This transition revealed the deep systemic gaps that often exist once active treatment concludes, highlighting a healthcare framework that is frequently ill-equipped to manage the chronic consequences of life-saving care.

In an interview with CURE, Prentiss discussed how her lived experience with BCRL shaped her advocacy for more robust survivorship protocols. She challenges the traditional "wait and see" approach to oncology, noting that symptoms of lymphedema can take years to manifest. By the time it is identified, the condition may have already significantly impacted a patient’s quality of life and financial stability.

Prentiss calls for a shift toward early risk assessment and shared decision-making, moving beyond the "authoritarian" model of medicine toward a more collaborative relationship. For Prentiss, the goal of oncology should not just be the absence of disease, but the long-term well-being of the survivor. Early recognition and intervention, she argues, can fundamentally change the trajectory of life after cancer.

CURE: Your own experience with BCRL ended your medical career. How did that transition from physician to patient shape your perspective on the current gaps in survivorship care?

Prentiss: When that happened, I was in an interesting place. I had been practicing for 16 years. I’d always wanted to be a doctor, ever since I was 2 years old, and to get that diagnosis was hard enough. But at the time, I had a boss who was not a physician, who told me, “A physician who is not clinically capable is of no value to me.” And so now, all of a sudden, after 16 years of practice, I'm only 42 years old, and after a very aggressive cancer, found out that I had a congenital heart defect and almost died from a sudden cardiac arrest while I was going through chemo, and then, having lost my mom after only three rounds of chemotherapy, to be told that I had no value, was crushing to me.

But what that experience gave me was my first real exposure to what happens when survivorship collides with systems that aren't designed to support the chronic consequences of cancer treatment, and the condition gave me a front row seat to survivorship, not just in theory, but in lived practice and lived experience. I saw the gaps. I saw the disparities, the unspoken struggles that follow successful treatment. So, it shaped my perspective profoundly, because I came to understand firsthand that survivorship isn't always the end of the story.

Research shows that BCRL symptoms often don't appear until 12 to 30 months after surgery. Why is the wait and see approach so prevalent in oncology, and how can we shift towards earlier types of risk assessment?

Well, I think we need to take a step back and look at the broader scheme of medicine. We often speak in terms of the patient/physician relationship, right? However, for centuries, there has been a more authoritarian approach to medicine. The doctor says, the patient does. And in an oncology the goal is, and has been, to do what's necessary to prevent the patient from dying of cancer. Getting rid of cancer was the end game.

But survival is not the end of the story. Quality of life matters, and lymphedema is often under-recognized and under-treated in survivorship care. And the concern is that if we don't identify it early, it can progress, impacting function. We have increasing infection risk and significantly affecting quality of life. And there's also a real financial burden that's associated with long-term management. So, in order to move the needle, we need to have a shared decision-making approach which helps patients better understand their risk, and when they better understand their risk it improves their adherence to whatever plan you establish. So, the key to shifting towards earlier assessment is the understanding that early recognition and early intervention can change the entire trajectory of survivorship.

Beyond physical swelling, how does chronic lymphedema impact psychological and social well-being of survivors, and why is this often so overlooked in the clinical setting?

First, there's the whole physical appearance. As a patient with breast cancer, you're already aware of all of the additional scars that are now that have happened to your body as a course of treatment. You finally get your hair growing back, you finally get over the radiation burns, and you're ready to be normal again. But now, all of a sudden, you have this huge limb that you can't hide from people. And if you hide it, maybe you wear a long sleeve to hide your compression sleeve. But are you going to wear long sleeves when it's 96 degrees and 100% humidity? No. If you have lymphedema in your hand and fingers, such as I do, wearing long sleeves won't cover the hand, and so there's that physical appearance that you're different. There's a mobility issue. If you're diagnosed in stage 2 and 3, like I was, it affects your mobility. And imagine being a young survivor in your 30s, you've been an avid tennis player. This is your where you exercise and get to express yourself and meet other people, and now you no longer can do that. I literally can't wear compression garments when I'm doing interviews like this, because if there's a problem with internet or Wi-Fi, I need to be able to react quickly with my mouse and with my computer. I can't do that in compression garments, but when I get off the phone, I now have to do a little bit more massage just to make sure that the swelling stays in in check. But every time I put on my compression garments, I'm reminded of my cancer journey.

And then, if you express your disdain for the disease, you have to live with people saying, “Oh, but at least you've survived.” Well, yeah, but lymphedema is not a consolation prize, and you have to live with your real diminished quality of life. And as lymphedema progresses, both time and cost increase significantly. I mean, in subclinical stages, management may be less than an hour a day and remains relatively low cost. But in later stages, you may spend two to three hours a day or more on care, and then now you're dealing with custom garments, repeated therapy and higher risk of complications.

So, what this really means is this represents time taken away out of a patient's life, from work, from family, from daily living. And when you look at the cost of the time over the course of a year, you're looking at two weeks in subclinical stages. You're looking at four weeks in earlier stages, and you could be looking at six or more weeks a year, that's just devoted to self-care alone.

This past weekend, I was speaking to a group of individuals on lymphedema, and it was a mix. They were clinicians, survivors, advocates, navigators. But I told them, I said, “Now listen, if I had had something that I'm going to give you freely, just let you have, but you have to commit to spending six or more weeks of your life managing it so this stays exactly where it is, it doesn't get out of hand, and it doesn't get any worse, would you let me let you have it?” No one raised their hands. No one wanted what I was letting them have. And I had to remind the clinicians in the room, neither do your patients. So the earlier we intervene, the less of a patient's life is consumed by managing the disease. Appreciate that managing a disease for the rest of your life affects you psychologically and most certainly, it affects you socially and economically,

As a public health advocate, what barriers do you see regarding access to preventative lymphedema care, particularly for underserved communities, and how can we improve education nationwide?

Many people are not aware that Black race and Hispanic ethnicity are associated with higher risk, highlighting the role of disparities in outcomes. So, risk assessment is not just clinical but it's also about equity and access. As care teams, we need to ensure that baseline surveillance is in place, referral pathways are clear, and barriers to access are reduced. The goal is not just awareness, it's making early detection and intervention actually accessible in practice, because early detection really only works if patients can access what they need. The goal is to ensure that patient are not just informed, but actually connected to the care and the support they need, because availability and accessibility are not the same thing. Early education matters, but access is what changes outcomes.

Transcript has been edited for clarity and conciseness.

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