Electra Paskett, PhD, professor in the Department of Medicine and the Division of Cancer Prevention and Control at The Ohio State University, talks about a new leg lymphedema study.
Interview conducted by Ivanhoe Broadcast News in April, 2022.
How has surviving lymphedema and breast cancer impacted your body of research?
PASKETT: So, I’ve had three breast cancers. My first one was about 25 years ago. And at that time, I developed lymphedema in my hand. I knew nothing about it, even though I was a cancer researcher in a medical center and in a cancer center. So, I started researching. I started by asking women and providers what they knew, how they found out about it, if the providers talked to the women. I also found that there was a disconnect. The women were counting on their providers, and the providers didn’t see it as necessarily their responsibility to inform the women about it. Then, I did further studies. I looked at the prevalence and asked, “Who’s living with it?” Then I looked at the incidence and asked, “Who develops it? Who’s more likely to develop?” At that time, I was only focusing on arms and hands. And then we moved into figuring out a way to educate women and prevent it. We did the first lymphedema prevention study in the cooperative groups. It was a null result, mainly because it was hard for women to adhere to the practices that we suggested which included wearing a compression sleeve. We gave them a very light compression sleeve to wear since they didn’t have lymphedema. We also had them doing some exercises and breathing that would open up the lymph channels, and unfortunately, if you don’t have the disease, you’re less likely to be adherent. So, we didn’t have an effect, but we had an effect in the intervention arm on range of motion. We suggested women, if they got an axillary node dissection, would be referred to a physical therapist. And the physical therapists help the women to get back full range of motion. So, when you get an axillary node dissection – full or sentinel, it’s really hard to raise your arm. So, we wanted them to be able to have full range of motion. And we did find that the women who were in the intervention arm returned to full range of motion earlier than the women who weren’t in the intervention arm.
You mentioned that you focused just on the upper body. Has there been a lot of attention to women who are struggling with lymphedema in the lower body?
PASKETT: There has not been. So, the study that we published, we were the first to publish the prevalence of lower extremity lymphedema in colorectal cancer survivors, among older female cancer survivors. There wasn’t a lot of attention to upper extremity lymphedema until more of us started getting it. And the breast cancer survivor group are extremely vocal, which is phenomenal. So, it started getting a lot of attention. Lymphedema can also happen in people who are treated, for example, for head and neck cancer or have melanoma – anywhere on their body that involves damaging the lymphatic system. So, if you think of the lymph system as a highway in your body, on the freeway when there’s an accident, there’s a backup. That’s exactly the same thing for the lymph system.
Can you talk to me about the research on lymphedema and quality of life in patients who have had those cancers?
PASKETT: So, we did a study in the Women’s Health Initiative. The Women’s Health Initiative is the largest study ever done in pre- and post-menopausal women. They were all postmenopausal when they were recruited into the study in the last part of the 1990s. They had to be up to age 74 and we recruited a total of 160,000 women in this study. A few years ago, my colleagues and I wrote a grant to the National Cancer Institute, and we were funded to form a cohort of survivors from the Women’s Health Initiative. So, women who had had either of eight types of cancers and were still alive and still agreed to be followed, were asked to participate in our cohort. So, from those women, we sent out surveys and the surveys asked about lymphedema, and we were able to tailor the questions to the specific cancer that the woman had. So, if they had endometrial, ovarian, or colon cancer, we asked about lower extremity. And then for breast, we asked about upper extremity. From that study, we were able to determine who had lymphedema. Now again, these are survivors. So, it’s not newly diagnosed. And these are older women. We wanted to see the impact of lymphedema on their ability to do regular activities of daily living and to function. We found that those with lymphedema had reduction in their physical functioning and their ability to carry on activities of daily living, especially in the colorectal cancer patients and especially in our oldest women.
What other impacts can that have when you have someone who has survived cancer?
PASKETT: Well, lymphedema causes pain. It causes swelling, probably the most common side effect. So, in your lower extremities, sometimes, you could get peripheral neuropathy where you can’t feel your feet, so you might not be able to walk. You also might have to wear one size larger clothes to be able to fit over the swelling. Shoes might be problematic to find to wear. So, the other thing is, they can fall and it’s hard to walk around. It’s hard to go up and down steps. It’s hard to take care of yourself. It’s hard to do the things you normally do like go to the grocery store, drive your car. And research has shown time and again that, especially for older persons, if they are not able to get up and move around, then that severely impacts their health.
What do these findings suggest? What kind of a message do you and your colleagues want to get out there?
PASKETT: I would like to make the message similar to what we do for women who are at risk for upper extremity lymphedema, which is to first of all educate. Educate the patient that they are at risk for this. And this would be those who have the surgeries, the procedures that somehow involve the lymph system. Educate what to look for. It’s not always the swelling, sometimes, it’s the heaviness or the tingling. And educate that it’s important to get something done. I want to tell a little story in here. When I was diagnosed with my lymphedema and breast cancer, I was very vocal about that. I was asked by our local newspaper to talk about lymphedema. So, they put a picture of me with my blue glove and my sleeve on the front page of the second section in the local newspaper and a woman who I knew from my church came up to me and she said, “So, that’s what’s wrong with my arm.” She had lymphedema on her upper arm, and she didn’t know that that was not supposed to be there. And she would always wear sleeves to cover her upper arms. She had no idea that the swelling should not be there. A lot of people think that it’s just a side effect from surgery, that it’s normal. But if you educate that it’s not normal and you educate the providers, just like my provider said, watch for swelling in your hand, tell the patient that. And then when they report that to you, send them to physical therapy. Because if we can get a patient in when the swelling is just beginning and early stage, we can do something about it to reduce it, to control it. I work very hard to keep my hand functioning. And it is unfortunately, a lifelong process.
Once these women have some of the impacts from lymphedema, is it ever cured? Does it ever really go away? Or is it a chronic condition?
PASKETT: It’s a chronic condition and the risk for developing lymphedema is always there. There’s a high point from diagnosis to 18 and 24 months after diagnosis. But you’re always at risk.
What’s the percentage of women who have developed the different cancers?
PASKETT: So, for ovarian cancer, it was 36.5 percent, for endometrial cancer was 32 percent, and for colorectal cancer 31 percent. So, one in three survivors of these cancers reports swelling. The mean age of our women was 78 years old and the time since cancer diagnosis was 8.75 years on average.
If there were one message that you would want people to hear from the research that you and your colleagues did, what would that be?
PASKETT: I think it’s important for women to be aware of their body, to notice changes, to report them, to be an advocate for themselves and to seek help.
When was the first time that you were diagnosed with breast cancer? Do remember how old you were?
PASKETT: Oh yeah. I was 40.
Were you diagnosed after your first mammogram?
PASKETT: No. So, my mother and her mother were cancer survivors. So, they started me with a baseline mammogram at 35 then, I had my third child and two years later, I got another mammogram. That’s when it was found. So, my youngest was 2 years old when it was found on just a routine mammogram. It was about the size of the tip of my pinkie finger.
When were the other two diagnoses?
PASKETT: So, the next one was four years later. I was preparing for a job interview here at OSU, and I found it in the shower. It was like a frozen pea under my armpit. So, I went back to my radiation oncologist. And she’s like, “No, no, no. Your nodes were negative.” Then, she got the surgeon to come in the exam room and they did a needle biopsy right on the spot, went in the other room and came back and said, “We’re sorry.” So, I had to have more surgery, six rounds of chemotherapy, lost all my hair. That was the hardest part. And then had radiation again and then went on aromatase inhibitors. Oh, and from the chemo, I got cardiomyopathy. So, I became a cardiac patient. It’ll be 12 years ago in August when on a routine mammogram again they found a lump in my right breast again. And Dr. Farr was my surgeon. I said, “Take the other one too,” and we did the onco-DX. And so, my number was low enough, I didn’t need any more chemo, which everybody was so excited about because they were worried about my heart.
When did the lymphedema develop?
PASKETT: It developed during my radiation oncology for my first cancer.
Is there anything about lymphedema and lymphedema of the lower extremities that you would want to make sure people know?
PASKETT: Lymphedema of the lower extremities is extremely understudied, but it is important. And it’s so important that the National Cancer Institute convened a group of experts about three years ago to figure out what we can do about this problem. And there was a report written from the recommendations, and we are now looking at launching different studies to see what we can do about it.
END OF INTERVIEW
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