Thanks to research, there are a record four million breast cancer survivors in the U.S. today. That’s a statistic that encompasses a wide range of experiences with the disease and includes people who have a history of the disease and those who are currently in treatment and living with the disease.
But just because a person’s treatment has come to an end doesn’t mean that their experience with the disease is suddenly over. Breast cancer survivors and thrivers often navigate physical changes, the emotional toll of the disease, and many more common short- and long-term conditions. Because more people are living with this disease than ever before, BCRF invests in research on breast cancer survivorship to help them not only live, but live well.
In honor of National Cancer Survivors Day on June 4, BCRF spoke with BCRF investigator and three-time breast cancer survivor Dr. Electra D. Paskett of The Ohio State University about the survivorship experience and why research in this field is critical.
Watch the full video above or read an edited transcript of her interview below.
Dr. Electra Paskett: Our BCRF-supported research funded us to conduct some studies on diet and exercise and how survivors could improve their health by losing weight and exercising. And then we really fell into this great opportunity to be part of the Women’s Health Initiative Cancer Survivor Cohort. The Women’s Health Initiative is the largest study ever done on postmenopausal women. We enrolled 160,000 women 30 years ago; we just celebrated our 30th anniversary two weeks ago. And these women have been followed over time, and they have developed cancer. We [have been] funded by the National Cancer Institute now for 10 years. And we enrolled these women in the Survivor Cohort, and our largest group of cancer survivors are breast cancer survivors.
We’re looking at issues of survivorship and what issues they face as they age and as they go forward after cancer treatment. And now we’re looking at trajectories of aging, and how having different cancers and different treatments impact women’s physical functioning and cognitive functioning as they age over time. We’re also looking at sleep patterns, and how sleep impacts health—that’s very exciting. It will give us many answers for older women who are looking to live healthy, happy, long lives after cancer and also for their caregivers and for their providers and clinicians to help them make decisions.
EP: Breast cancer survivors really have a lot of issues that they have to deal with after treatment. One of the issues is a condition called lymphedema. I am a three-time breast cancer survivor. And when I was diagnosed with my first cancer at age 40, I develop lymphedema in my hand and went through treatment, and I didn’t know anything about lymphedema. I learned about lymphedema, and now I also study it. And lymphedema can occur anywhere that there’s been surgery in your body, and it results from damage that was done to the lymph system. In the Women’s Health Initiative, we actually published the first study looking at the occurrence of lower limb—so that’s in your legs—lymphedema in colon cancer survivors, as well as looking at the occurrence in ovarian endometrial cancer survivors. And in breast cancer survivors, and in older women, lymphedema is a problem, and it impacts physical functioning.
Other things are the effects of chemotherapy. And a lot of the effects of chemotherapy include the things we think about initially, like losing your hair, nausea, vomiting, and things like that. But long-term effects of chemotherapy can also include damage to the heart (or cardiotoxicity). That’s something that a lot of researchers are studying. We have published a paper looking at that, and we’re asking: Is there a marker that we can find that can tell us who is more likely to develop cardiotoxicity and experience then poor outcomes from cardiotoxicity?
Those are some of the outcomes that survivors deal with. And we are looking at ways that we can increase quality of life for survivors—like diet and exercise programs.
EP: Sometimes it’s hard to remember questions to ask your doctor or even think of questions to ask your doctor. It’s important to write questions down beforehand and bring those with you. Or you can even tape the conversation with your doctor so that you’ll remember what to ask. But you should ask your doctor things like: If I’m getting a new treatment, what can I expect with that? What are some of the side effects that I should look for?
When I was first treated for breast cancer. My radiation oncologist said, “I want you to let me know if you have any swelling in your hand or fingers.” So, when I developed swelling in my finger, I let her know and she sent me to physical therapy right away. Now I don’t have the side effects of lymphedema. It’s important to look for side effects and let your provider know.
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EP: I was diagnosed with breast cancer at age 40 the first time. My mother had breast cancer and my grandmother had breast cancer, so I thought I would develop breast cancer. But I was very surprised when I developed it again? at age 44. Years later, I had an axillary recurrence that was like a frozen pea that I found in my axilla [the underarm/armpit]. And at that time, I had to have chemotherapy. Both times I had surgery and radiation, and then the second time I had chemotherapy, and then I was put on aromatase inhibitors. I then had another recurrence in the same breast as the first cancer, nine years after that second axillary recurrence. And for that cancer, I had a double mastectomy—a mastectomy on my right breast and a prophylactic mastectomy on my left breast. Then I was also put on aromatase inhibitors. I’ve taken what I’ve learned from being a patient and brought it into my research, for example, on lymphedema and my research on quality of life and survivorship.
EP: We’ve learned so much about breast cancer. BCRF has really been at the forefront and funded the investigators around the world who are making these important discoveries. And if we don’t have research, we aren’t going to get a cure. I’m a three-time breast cancer survivor, and I’m alive because of research. We have women now who are living with metastatic breast cancer that we didn’t have many years ago, and that is all because of research.
EP: BCRF funding is so important to our research because we’re able to use those funds, first of all, to collect pilot data to be able to get funding for larger studies. Our Women’s Health Initiative Cancer Survivor Cohort was started as a pilot study with BCRF funding. And here we are now. We’ve gotten 10 years of funding from the National Cancer Institute and enrolled these women and are really finding answers for older women surviving breast cancer and what they can do to live a healthy life. We wouldn’t have been able to do that without funding from BCRF.
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