Susan G. Komen® https://www.komen.org One moment can change everything. Thu, 01 Sep 2022 14:12:37 +0000 en-US hourly 1 https://wordpress.org/?v=5.9.4 https://www.komen.org/wp-content/uploads/Logo@2x-141x150.png Susan G. Komen® https://www.komen.org 32 32 Fernando’s Story: Honoring & Remembering His Mother While Giving Back https://www.komen.org/blog/fernandos-story-honoring-his-mother-while-giving-back/ Tue, 06 Sep 2022 05:45:00 +0000 https://www.komen.org/?p=31872 Susan G. Komen’s 100 Mile Cycle Challenge gives people an opportunity to provide hope and help to families whose lives have been turned upside down because of breast cancer – families like Fernando’s. In August, Fernando clipped into his cycling shoes and pledged to ride 100 miles as a way to honor his mother, Patricia, while also raising funds for Komen. 

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Susan G. Komen’s 100 Mile Cycle Challenge gives people an opportunity to provide hope and help to families whose lives have been turned upside down because of breast cancer – families like Fernando’s. In August, Fernando clipped into his cycling shoes and pledged to ride 100 miles as a way to honor his mother, Patricia, while also raising funds for Komen. 

Fernando, the only boy in the family and the youngest, was especially close to his mother. “She was the kind of person everyone wanted as their mom. She was very loving, the glue to our family, very kindhearted and motherly,” he said. “We had a very strong bond between us. I could be sitting next to her and just know what she was feeling.”  

In 2011, Patricia went to the doctor because she was experiencing nipple discharge. When her doctor told her there was a possibility of breast cancer, Fernando made plans to come home from school. “It was a gut wrenching feeling, something I’ve never experienced before,” he said. His family was devastated when Patricia was diagnosed with stage 4 breast cancer, also known as metastatic breast cancer.  

“She was so strong throughout everything, her treatment, the difficult times,” Fernando said. When Patricia began losing her hair after chemotherapy, Fernando’s dad shaved her head. Then Fernando and Patricia’s mother shaved their heads, too. “It was a way for us to support her,” he said.  

After two years of treatment, Patricia passed away in 2013, when she was 48 years old.  

When Fernando signed up for the 100 Mile Cycle Challenge, he did it with his mother on his mind. “Sometimes we go about our days after a loved one has passed and you feel like maybe you’re forgetting the person, and this allowed me to focus on my mom,” he said. “It gave me a chance to remember her and honor her, and to express my love for her. And riding that much can be painful, so it helped me remember what she went through and despite the ugly truth and reality of cancer, she was strong, and she overcame a lot every day.” 

Joining the Challenge was like joining a community of like-minded people for Fernando. “There’s this platform and a group of people from all over doing something to remember their loved ones,” he said. “And you’re not alone. It’s the perfect opportunity within our busy lives to ride, whether it’s outside or in class, and remember the pain and the good times with our loved ones. Cycling is a good example of life. We’re constantly moving forward. There are hills we need to climb, there are downhills. Doing a challenge like this is a good way to remember what our loved ones went through.” 

Fernando pushed past his 100 miles and met his fundraising goal. “I’m blessed I had my mother with me physically for 25 years,” he said. “Even through some of her darkest days, she didn’t let cancer take her love, joy and laughter.”  

Follow Komen on Facebook to learn about our next Challenge. 

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Carlene’s Story: Breast Cancer Diagnosis Shaped a New Career Helping Others   https://www.komen.org/blog/carlenes-story-breast-cancer-diagnosis-shaped-a-new-career-helping-others/ Thu, 01 Sep 2022 18:47:00 +0000 https://www.komen.org/?p=31769 Carlene Thomas King was diagnosed with stage 2 breast cancer in 2007. A real estate broker by trade, her experiences with breast cancer led her to an additional career, helping people with breast cancer. 

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Carlene Thomas King was diagnosed with stage 2 breast cancer in 2007. A real estate broker by trade, her experiences with breast cancer led her to an additional career, helping people with breast cancer. 

When I was diagnosed with breast cancer, I was a real estate broker, but my experiences with breast cancer led me to a new career, and now I work in cancer care services. I’m in the community as a health worker, helping others walk through this, advocating and educating.

The older people in my family didn’t always share their medical history. My mother was diagnosed with breast cancer when she was 75. After her diagnosis, we found out two of her sisters were later diagnosed with breast cancer.

In 2007, I felt a lump in my breast and went to my doctor, who did a clinical breast exam. She didn’t really feel anything but sent me for a mammogram. There was something, but they said they’d watch it for six months, and I said no, I won’t wait six months because my mother had breast cancer. The radiologist did not want to do an MRI, so I had to argue a bit to get it. I pushed back. And when the MRI results came back, the radiologist said, oh, there’s a lump.

After my results, I went to another imaging center to have the actual biopsy done. They were really good, because they prepared me even before we got the official report that it was probably cancer, and sure enough, it was.

From there I found a breast surgeon. She gave me the options of a bilateral mastectomy, having one breast removed, or a lumpectomy. I chose to do a bilateral mastectomy, to limit the risk of the cancer coming back as much as possible.

I did four rounds of chemotherapy, then had immediate reconstruction right after surgery. I think it lessened the stress of breast cancer because I never really lost my breasts. I at least had an image of them being there. In all, my treatment lasted from February to August 2008.

I’m the kind of person who will talk to anybody who’ll listen. While I was in treatment, I met a lot of women who were just really struggling, who were having to sell vehicles, struggling to pay rent, all of that, and they didn’t always know where to turn. I didn’t have any financial issues, so I never thought to reach out to any social service organizations, but I learned that there were things I was eligible for to help me during treatment. There were organizations that could help you find a place to get a massage, help you with medications, help you with insurance, etc.

I realized I could help other people with breast cancer find these things, too. I could advocate and help educate about breast health. Really, it was just a matter of me wanting everybody to know about all the resources they could apply for.

I’m passionate about helping others find the resources they need. I find great meaning in assisting people who are struggling and don’t know where to turn, and I could not do what I’m doing today if it had not been for my own experiences with breast cancer.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.

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Shaun’s Story: I Shall Live https://www.komen.org/blog/shauns-story-i-shall-live/ Thu, 01 Sep 2022 05:44:00 +0000 https://www.komen.org/?p=31562 Shaun Adkins was diagnosed with stage 2 breast cancer when she was 44 years old. Before she was born, her grandmother passed away from the same disease.

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Shaun Adkins was used to body aches. She has lupus and during flareups, she’d be tired, have joint pain and muscle weakness. When her arm began to hurt, she assumed she was having a flareup. But then she found a lump in her breast. “I went to my primary doctor, who sent me to a breast cancer center, where they did a diagnostic mammogram and a biopsy,” Shaun said. Results showed Shaun had stage 2 breast cancer. 

Shaun knew how devastating a breast cancer diagnosis can be. Her grandmother passed away from the disease before Shaun was born. “My mom would tell me what my grandmother went through when she had breast cancer. My grandmother had actually bought a house, but never had a chance to live in it because she died,” Shaun said. “We caught my breast cancer early. I’ve always gone in for my regular mammograms because of my grandmother.” 

“I was already living with a chronic illness. I froze when I heard the words ‘breast cancer.’ I was only 44. I have 13-year-old twins. I’m active. And now I have breast cancer?” Shaun said. “I was numb.” 

The moment Shaun’s cancer diagnosis felt real was when she had her port for chemotherapy put in. “In my head I thought, okay, this is real now, and I told myself, it’s time to fight,” she said.  

“I was nervous about starting chemo. I worried how my body would react to it. I was already on so many medications because of the lupus,” said Shaun. “No one could go to my appointments with me because of the pandemic. I broke down during the first chemo, sitting in this little cubicle by myself. I went through two boxes of tissue crying, thinking, ‘what’s going to happen now?’” 

Shaun’s treatment included a lumpectomy, chemotherapy, radiation therapy and immunotherapy. She developed lymphedema and uses a lymphedema compression machine for an hour every day, something she will likely need to do for the rest of her life.  

“Breast cancer is mentally and physically draining. I’m thankful to God for my support system, but it was still so hard,” Shaun said. “When I was sitting alone while getting chemo, I was back and forth, up and down, not knowing if God had decided it was my time to die. But I’ve learned there is life after cancer, and I hope other people know that. I hope they know they’ll be okay.”  

Much of Shaun’s treatment fell during the COVID-19 pandemic, so there were things she missed. “Life was on hold,” she said. “My daughter graduated from college, and I couldn’t attend. I couldn’t go places. Things like that made me feel helpless. I was mad at the beginning, when I was first diagnosed, but I realized I needed to encourage myself, I needed to find a way to still enjoy life.”  

In the middle of her chemotherapy treatments, Shaun thought about her grandmother and the house her grandmother bought but never had a chance to live in. “I said okay, I’m buying a home,” Shaun said. “And I bought a home, while doing chemo. I said, ‘thank you, God.’ I was able to buy a home, even with cancer. And I was able to move into that home. And I have a sticky note on my bathroom window in that home that says, ‘I shall live.’”  

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment. 

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Domenica’s Story: As a Latina, I Know We Need To Talk About Breast Cancer More https://www.komen.org/blog/domenicas-story-as-a-latina-i-know-we-need-to-talk-about-breast-cancer-more/ Thu, 01 Sep 2022 05:09:00 +0000 https://www.komen.org/?p=31566 In 2020, Domenica Lagunas underwent treatment for stage 2 triple negative breast cancer. She works out and undergoes regular wellness appointments, including annual mammograms. When she learned she had breast cancer, it came as a shock.  

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In 2020, Domenica Lagunas underwent treatment for stage 2 triple negative breast cancer. Prior to her diagnosis, she was proactive in leading a healthy lifestyle. She worked out and attended regular wellness appointments, including annual mammograms. When she learned she had breast cancer, it came as a shock.

As one of six sisters who grew up in a Hispanic household, Domenica Lagunas acknowledges that her family never really spoke about breast health. There was a level of discomfort about this topic — about not wanting others to know about personal health concerns, which could ultimately lead to incorrect or false information about breast cancer.

This stigma around breast health would sometimes keep women Domenica knew from getting mammograms. “I think it was a lack of awareness, resources and education,” she said. “Now as a breast cancer survivor and a mother, it’s important for me to talk to my children about breast health. It is possible for Latinas to be diagnosed with an aggressive form of breast cancer. Discussing breast health should be important within the Hispanic community and part of routine wellness conversations.”

In 2020, Domenica developed pain in her breast that radiated out and felt warm to the touch. It was just months after her annual mammogram, which came back clear, so initially she wasn’t alarmed. “I thought it was due to working out and lifting weights,” she said. Nonetheless, the discomfort persisted. When Domenica found a small lump during a self-exam, she called her doctor for a follow-up.

“At the time, cancer didn’t cross my mind,” Domenica recalled. “When I went for my follow-up, I was still not expecting it to be cancer.” After her scan and ultrasound, she knew something was wrong when the nurse returned to the room with the radiologist, who told her there was something of concern on the images. Domenica needed to undergo a biopsy as soon as possible.

“Waiting for the biopsy results was difficult. I said to my husband, ‘What does this mean for us, for our family and our future?’” she said. “Days later while I was at work, I noticed missed calls from my doctor asking me to call back immediately for the results. I knew at that moment it was going to be cancer. I was going to hear the news no one can ever be prepared for. When I heard the words ‘you have breast cancer,’ I was in a state of shock.”

Domenica’s treatment for stage 2 triple negative breast cancer included chemotherapy, surgery and radiation therapy. She also received physical and occupational therapies to help with side effects from treatment. Domenica was too weak to run or workout like she did pre-diagnosis, so she took up nature walks. Finding a way to stay active was important for her, and walking brought her a sense of comfort and peace for her healing and emotional well-being

“Cancer was difficult enough before COVID, but as a cancer patient who was immunosuppressed, it was really difficult,” she said. “In-person interactions were very limited due to COVID restrictions to ensure my health wasn’t compromised. My immediate family and other individuals reached out to show their support in various ways. When I think of my cancer journey, it’s inevitable not to think of going through it during a pandemic.”

 Domenica’s main support came from her husband, daughters and son, who were her daily caretakers. They saw firsthand the changes brought on by cancer. “It affects the entire family living with someone going through this,” she said. “The strength I learned from my faith made me strong, along with the belief that God will carry me through this journey.”

When it came time to finding resources about breast cancer, Domenica turned to Susan G. Komen. “Cancer is such a scary word, and I knew I needed to find a trusted source of information,” she said. “I read survivor stories on Komen’s website and found questions I could ask my own care team.”

Domenica faced her journey head on. She empowered herself to be her own advocate in order to make the best decisions about her health and to be well informed throughout her treatments. “I didn’t choose to have cancer,” she said. “Cancer chose me.”

It’s important for Domenica to share her story with the Hispanic community to increase awareness about breast health and cancer. “There is a community for you,” she said. “We need hope, and research and donations can provide that. Whether someone is at the beginning, in the midst of it or are unfortunately no longer here to share their stories, we need hope.”

After Domenica was diagnosed, she didn’t see many people who looked like her when seeking out resources and information when undergoing treatment. She’s hopeful more representation will happen in studies and clinical trials.

“When I was first looking for information about breast cancer, I didn’t see enough studies for people like me. I didn’t see people like me participating in clinical trials,” she said. “As a Latina, it’s important for me to educate others about breast health — for our mothers, our daughters, our sisters, our aunts and anyone who possibly will walk through this journey.”

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.

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Now, More Than Ever, Breast Cancer Patients Need Your Help https://www.komen.org/blog/now-more-than-ever-breast-cancer-patients-need-your-help/ Thu, 01 Sep 2022 05:00:00 +0000 https://www.komen.org/?p=31569 During these difficult economic times, costs are rising for everyone, and we’ve seen an increase in people reaching out to Susan G. Komen for support. This year alone, more than half of the 25,835 people who have reached out to the Komen Patient Care Center for support did so because of economic concerns related to […]

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During these difficult economic times, costs are rising for everyone, and we’ve seen an increase in people reaching out to Susan G. Komen for support.

This year alone, more than half of the 25,835 people who have reached out to the Komen Patient Care Center for support did so because of economic concerns related to breast cancer care – whether it was being able to afford a mammogram or needing help with a bill.   Further, 9,200 people who are currently in treatment for breast cancer have already received financial help through the Komen Financial Assistance Program, and requests for financial support through this program have increased by 62% compared to last year.

A Kaiser Family Foundation report found that women delay or avoid care because of the cost, choosing to prioritize their families and children over their own health and instead using already limited financial resources for food, bills and/or transportation costs. No one should have to choose between paying for basic needs and getting treated for breast cancer.

When Shareka was diagnosed with breast cancer, she had a full-time job, good insurance and support from family. Yet she found she still needed help to pay her bills. “I turned to Komen and applied for financial assistance. Within hours, I had a response and was able to pay the bill,” she said. “Copays and doctors and medicines and surgeries – it adds up. It’s comforting to know Komen is there for people who need extra help.”

Receiving a breast cancer diagnosis creates a lot of questions for patients, including “How will I afford my treatment?” The mountain of bills and expenses that come with breast cancer – even for those with good insurance – can cause fear and anxiety. As the expenses pile up, breast cancer patients across the country often face difficult decisions. And many may wonder: “Can I take care of my family and pay for treatment at the same time?”  

According to the National Institutes of Health, medical expenses for breast cancer were an estimated $16.5 billion in 2010 and have risen in the past decade. Treatment alone is expensive. But the emotional, physical, mental and financial toll breast cancer inflicts on patients is what makes the disease especially toxic. Yet hundreds of thousands of people across the U.S. are facing the struggles every day that come with a breast cancer diagnosis.

People like Melissa, who, within the span of a week, learned she had breast cancer and was laid off from her job. “My insurance was through COBRA and I struggled,” she recalled. “I’m a single mother of two daughters. I worried what they’d do without me. I worried I was going to die.” Melissa found support through Komen, not just financial but emotional, too. “To have this type of support while going through breast cancer treatment is huge,” she said.

Breast cancer treatment has a lot of hidden costs that add up quickly. These could include the cost of childcare during medical appointments and gasoline for trips to the doctor. Yolande, who is undergoing treatment for stage 2 breast cancer, found her paycheck barely covering her day-to-day living and turned to Komen.

Komen works across all fronts to remove financial and other barriers to care. “Medical bills are overwhelming when you are on a breast cancer journey,” Yolande said, noting that she worried about how she’d pay her bills. “The financial assistance from Komen helped ease the mental stress of bills. I’m so thankful for what Komen does for patients with breast cancer.”

Komen provides crucial resources including the Breast Care Helpline, the Financial Assistance Program, patient navigation and evidence-based information on breast cancer, treatments, clinical trials and more.

But we can’t provide these resources without your help. Now, more than ever, we need your help to ensure people undergoing treatment for breast cancer have access to the resources they need.

[Support Komen Today]

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A UT Health San Antonio Researcher is Looking Holistically at Improving Quality of Life for Hispanic and Latina Breast Cancer Survivors  https://www.komen.org/blog/a-ut-health-san-antonio-researcher-is-looking-holistically-at-improving-quality-of-life-for-hispanic-and-latina-breast-cancer-survivors/ Sat, 27 Aug 2022 16:33:55 +0000 https://www.komen.org/?p=32274 Komen-funded researcher Dr. Amelie Ramirez is seeking to improve long-term outcomes for Hispanic and Latina breast cancer survivors through a holistic program.

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Susan G. Komen has been deeply invested in supporting researchers at Texas cancer institutions since its founding in 1982. Over the last forty years, Komen has awarded 319 grants to Texas-based researchers, totaling nearly $117 million. 

Amelie Ramirez, Dr.P.H., M.P.H., of the University of Texas Health Science Center at San Antonio (known as UT Health San Antonio), is the Director of the Institute for Health Promotion Research. She is also a Susan G. Komen grantee and serves as a Komen Scholar, where she is part of an advisory group of distinguished leaders in breast cancer research, clinical practice, public health, advocacy and other relevant fields.  

She recently spoke with Komen about a research project she’s leading to improve long-term outcomes for Hispanic and Latina breast cancer survivors through a holistic program that provides therapeutic yoga with meditation, optional tailored exercise and diet counseling, and real-time psycho-social support based on survivors’ motivational status.  

Dr. Amelie Ramirez

Komen: Breast cancer affects everyone differently. What are some of the trends you’ve noticed in Hispanic and Latina women that might be different from other ethnic groups? 
Ramirez: I’ve become even more passionate about working with the Hispanic population because breast cancer has become the leading cause of death in Hispanic women and Latinas. We don’t understand why the incidence rate of breast cancer is lower, compared to Black and white women. But when you look at mortality rate within Hispanic women, breast cancer is the leading cause of cancer death for them. And what we’re finding is that our population is really impacted by a number of the social determinants of health that make it difficult for our women to access care. 

For many women, we put off our care; we put our families first and it’s hard for us to come in to see a doctor. When you don’t have health insurance, or you tend to be of lower socioeconomic status or lower education, and you’ve never been told about breast cancer, your likelihood of coming in and being diagnosed with breast cancer at a later stage is higher. This is what we have seen in Hispanic women – late-stage diagnosis.  

Komen: Can you tell us more about your Komen-funded research project? 
Ramirez: With this new project, we’re taking a holistic approach to helping Hispanic and Latina breast cancer survivors. We’re trying to take what we’ve learned over the years about physical exercise, mental health and spiritual wellbeing and study them together. Usually, we study each one of these things individually, but we would like to see what kind of synergistic effect these three components will have in terms of totally looking at mind, body and spirit, and how we can optimize this to really improve the health-related quality of life for breast cancer survivors. 

So, with this new study, we’re integrating a yoga-based exercise program with meditation. We’ll also provide participants with some tailored exercise and diet counseling to increase their endurance and help them maintain their weight, because we know weight gain after diagnosis can increase one’s risk of recurrence. The whole idea is that we’re really providing them with the information that they need to keep their recurrence at a lower rate over a long period of time. All of these are lifetime skills that people can take with them and also share with other family members. 

Komen: The idea of involving family members seems important, especially since family is an important part of Latino culture and Latinas often prioritize caring for family members over themselves. Do you envision participants in your study becoming “health ambassadors” and talking to family members about breast health? 
Ramirez: Definitely. As they become more informed about their own health and about things like genetic risk that may have predisposed them to breast cancer, they’re now becoming more knowledgeable. And then just recognizing that external factors such as stress can be a precursor to health issues as well and how to better manage that stress over a long period of time will not only be beneficial for them, but it’s also a tool they can share with others and talk about health in different ways.  

Komen: Are you only recruiting people in the San Antonio area to participate in your study? 
Ramirez: We are hoping to have a telehealth component to the study. We feel obviously that in-person would be the optimal situation, so we will be recruiting locally. And then we also plan to take the study to Laredo as well. Laredo is a border setting, so we hope to compare the barriers to actual physical participation in that external setting. We’ll have some telehealth elements to the study in Laredo that we can incorporate into the program. 

Komen: How important is it to have Latino representation in the study, in terms of the team members who are leading it? 
Ramirez: It’s extremely important. We base a lot of our work on the social cultural, social cognitive theory by Albert Bandura and where he showed that if you can show an individual that represents or is similar to the person you’re trying to reach, you’re more likely to increase their efficacy to try it. So, this is why it’s really important to show the individual that the researchers understand where they’re coming from, we understand some of the issues they are dealing with, and that we are here to truly help bridge that cultural gap they may have experienced. 

Komen: Going through treatment can be a lot for a person, so how do you get them interested and excited about participating in your research? 
Ramirez: In addition to including the exercise, the meditation, the spirituality, we also do some tailored messaging to increase the motivation of the individual and really reinforce their self-efficacy. We want people to know that they can do all of this. The first thing we’re going to hear is, “I don’t have time to do all of this.” But it’s amazing – there’s always time to just say a positive message before you go to bed at night, in terms of incorporating your spirituality. You know, there’s always 30 minutes, 30 seconds, a minute where you can take the time and just really breathe and breathe deeply and kind of bring that stress level down. We’re going to provide them with these motivational messages as well, to reinforce what they’re learning. 

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This Memorial Sloan Kettering Researcher Is Trying to Identify Early Breast Cancer Metastasis To Save More Lives https://www.komen.org/blog/this-memorial-sloan-kettering-researcher-is-trying-to-identify-early-breast-cancer-metastasis-to-save-more-lives/ Sat, 27 Aug 2022 16:20:03 +0000 https://www.komen.org/?p=32270 Komen-funded researcher Dr. Pedram Ravazi is leading a three-part study to identify microscopic breast cancer metastases in patients so it can be treated before it becomes deadly.

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Susan G. Komen has been deeply invested in supporting researchers at New York cancer institutions since its founding in 1982. Over the last forty years, Komen has awarded 209 grants to New York-based researchers, totaling $58.4 million.

Pedram Ravazi, M.D., Ph.D., a medical oncologist at Memorial Sloan Kettering Cancer Center, is a Susan G. Komen grantee. He recently spoke with Komen about a three-part study he’s leading that analyzes circulating tumor cell DNA (ctDNA) from early-stage breast cancer patients to detect and monitor patients for microscopic breast cancer metastases. Metastatic breast cancer is when cancer spreads beyond the breast and becomes deadly.

Dr. Pedram Razavi

Komen: Could you explain the focus of your research?
Razavi: We’re working with patients who have stage 1 to 3 high-risk breast cancers to identify early microscopic breast cancer metastasis, when it can potentially be treated more effectively with the goal of eradicating the residual cancer and preventing its progression to deadly metastatic breast cancer. 

We know that neoadjuvant and adjuvant therapies work by eradiating microscopic metastatic tumors, and these therapies can almost double the chances for “curing” breast cancer. The problem is that we have no good way of knowing whether a patient’s tumor has already metastasized. Basically, we offer treatments almost blindly based on assessment of baseline risk of recurrence to all our high-risk patients.

This results in both over- and under-treatment of a certain population of patients.  For example, in high-risk patients with aggressive breast cancers, such as triple-negative breast cancer, recurrences occur frequently despite our best efforts as there are subpopulations of metastatic cancer cells that are resistant to treatment. These cells have survived our treatment and will eventually progress to overt metastatic disease.  So, there is a great potential to tailor our therapies if we have a robust method to identify these microscopic metastatic cells and monitor their responses to our therapies. Here the goal is to escalate care to eradicate these resistance residual tumor cells and prevent metastatic recurrence in the patients at highest risk for recurrence.

For estrogen receptor-positive (ER+) patients, the picture is more complex. We see a lot of recurrences in the first five years, especially in those with high-risk ER+ disease with microscopic metastatic tumors that may already be resistant to endocrine therapy. But some patients may be at risk for recurrence 10 or even 20 years after their diagnosis. We presume this happens because these patients have microscopic metastatic tumors that grow slowly during therapy or change to become resistant to treatment. The problem is that we really do not know which tumors are more prone to develop these resistant cells and have no good understanding of how tumors grow during therapy. So you can imagine that if we can identify the microscopic disease and monitor their growth and evolution, then we have an opportunity to intercept early and either prevent development of these resistance tumors or eradicate them with modifying our treatment approach.

In this study, we’re trying to tackle these very challenging problems and understand when and why these microscopic tumors become resistant to our best treatments and eventually grow to become overtly metastatic. Our ultimate goal is not achieving stable disease state, which is an acceptable outcome in the metastatic setting, but to devise approaches that can eradicate cancer. As a researcher and clinician, I want the tumors to be gone and that’s the focus of the first part of our three-part trial.

Komen: And how are you conducting your study to identify early metastasis?
Razavi: We know that tumor cells shed a small amount of their DNA into a person’s blood stream. We call this circulating tumor DNA (ctDNA). When a person’s breast cancer becomes metastatic, the amount of ctDNA is relatively high and we can use liquid biopsy (a blood test) to monitor the disease or identify alterations in the ctDNA that could contribute to treatment resistance.  

Very early or microscopic metastatic cancers also shed ctDNA into the bloodstream.  However, the amount of ctDNA coming from these microscopic tumors is often extremely small, and we don’t have sensitive methods to detect very low levels of ctDNA in the metastatic setting. In this study, we will develop and optimize an ultrasensitive method to detect low levels of ctDNA, and we will then use this method to detect and monitor ctDNA and metastatic residual disease (MRD) in patients with early-stage breast cancer.

We have been collecting blood samples before and after surgery and neoadjuvant or adjuvant chemotherapy from a large group of MSK patients with early-stage breast cancer who have admirably participated in our ctDNA monitoring study called MSK-LINC.  We will use these samples to understand the rate and pattens of MRD detection in patients with early-stage breast cancer.  All of this information will help inform the treatment strategies and design of new clinical trials that aim to identify metastasis early and eradicate MRD. 

Komen: What might those treatment strategies look like for MRD positive patients?
Razavi:
This is a fantastic opportunity to start bringing new treatment strategies and even new drugs in early stages of development into early-stage treatment. We have a lot of promising drugs such as antibody-drug conjugates, targeted therapies, and new endocrine therapies that are approved for or being developed in metastatic disease that I’d like to bring to early-stage patients. Some of these drugs are in Phase II clinical trials and show a lot of efficacy. Patients with early-stage breast cancer who are MRD positive are at very high risk of metastatic recurrence and, in my opinion, this justifies the use of such promising experimental therapies to give the patient the maximum possible chances of a cure. This could create a new model for drug development when new drugs can be developed and tested in such very high-risk patients, but with the goal of eradicating and curing breast cancer.

Komen: How does your research differ from other studies that focus on MRD in patients after a tumor is removed?
Razavi:
What the studies are not showing at this point are the dynamics.  How does MRD evolve, even in terms of detection, and what are the patterns? 

There have been multiple studies on this, but all of them are on a smaller scale of maybe 50 patients or 100 patients. In this study, we have a very large cohort of more than 1,300 patients who have provided serial blood samples allowing us to comprehensively characterize and study MRD before and after surgery and while people are on treatment.  

Our data is becoming mature – on average our patients have 5-6 years of follow up, which is a reasonable follow-up time for most of our high-risk patients, but not for some of the ER+ patients who are at risk of late recurrence. So now we’re looking for patients who are done with their recommended five years of hormone therapy, and my research team is asking if we can get baseline blood samples and follow them. We’d also like to get samples from patients who are 10 years out from treatment and might be at high risk for recurrence.

Komen: It sounds like the blood tests after treatment is complete are crucial in observing when and how microscopic disease evolves. How do you know when and how often to take a blood sample?
Razavi: We know some answers to that question, and the short answer is as soon as possible so that MRD does not become more advanced or more complex, which can negatively affect our chances of eradicating it. Having an extremely sensitive way to identify MRD very early is key here. It also depends on the aggressiveness and growth rate of the tumor, as well as the effectiveness of the therapies that we have available for that particular breast cancer. For example, triple-negative breast cancer is an aggressive tumor and if the MRD grows for two years, the patient might already have overt metastatic cancer that is not considered to be curable with our current treatments.  For ER+ and HER2+ patients however, if you find growth within one to two years, it could still be possible to eradicate the tumors as we have effective therapies for these types of breast cancers.  

Komen: What is the focus of Aim 2 and Aim 3, the second and third parts of your study
Razavi:
The idea in Aim 2 is to sequence both the metastatic recurrence and the primary tumor and then construct the evolutionary tree of the cancer. The goal is to identify the subpopulation of cancer cells (subclones) that have existed in the primary tumor and were already resistant to therapy. These cells were fit enough to grow and ultimately form a metastatic recurrence or developed new features during treatment that allowed them to become resistant and ultimately metastatic. We will then develop patient- and tumor-specific ctDNA assays and analyze the serial ctDNA samples that we have from the time of diagnosis to when metastatic recurrence occurs. This has never been done before and would allow us to learn about early evolution of microscopic metastatic disease, as well as and when and how these small resistant metastatic tumors started to grow. This could teach us who are the patients at higher risk of developing metastatic disease and how these tumors become resistant to our drugs and progress to metastatic disease. We will then use all of this information for Aim 3, which is to create models to predict these outcomes based on clinical, genomic, and early ctDNA changes in primary tumors during treatment.

Some patients will develop resistance – either acquired resistance or resistance that already resided in the tumor – to therapies. We want to try to predict resistance before it happens. If we know when and how a tumor becomes resistant, it can potentially place us one step ahead of the tumor when we can escalate or modify our treatment strategy to kill it. Or if we see a tumor has responded to treatment, we can stay the course or in some instances deescalate treatment, so we don’t overtreat a patient. Aim 3 will hopefully give us a lot of information to personalize treatment and improve outcomes in the future for all patients.

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Alisa Berndt Knows the Importance of Breast Cancer Screening https://www.komen.org/blog/alisa-berndt-knows-the-importance-of-breast-cancer-screening/ Mon, 22 Aug 2022 14:57:40 +0000 https://www.komen.org/?p=31635 Wisconsin native Alisa Berndt feels grateful her insurance covered part of her treatment expenses when she was diagnosed with stage 2 invasive lobular carcinoma in 2020.

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Wisconsin native Alisa Berndt feels grateful her insurance covered part of her treatment expenses when she was diagnosed with stage 2 invasive lobular carcinoma in 2020.

“I’m not the type of person that does mammograms all the time,” Alisa said. “I hadn’t had one in two years, and I was about to go see my primary care doctor for my annual physical. I thought I better get my mammogram so he wouldn’t be upset with me for skipping them, and that’s how we figured out that I had breast cancer. They saw a calcification on my mammogram.”

Alisa underwent a lumpectomy and radiation treatments, and her diagnostic mammogram the following year showed no signs of breast cancer. Her doctor recommended Alisa continue having annual diagnostic mammograms, which aren’t covered by her insurance company. High medical debt from her cancer treatments meant she couldn’t afford her annual diagnostic mammogram this year.

Alisa turned to Susan G. Komen for help. She called the Breast Care Helpline and applied for a voucher from Komen’s Screening & Diagnostics Program to cover the cost of her diagnostic mammogram. The Screening & Diagnostics program provides income-eligible people with no-cost screening and diagnostic services like the diagnostic mammogram Alisa needed. 

“I had to stop and think about what I was going to do. I called Susan G. Komen and was told that I could apply to see if they would pay for the diagnostic mammogram. I was very fortunate because, without  Susan G. Komen, I wouldn’t have had my mammogram this year. I can’t afford it. Just because somebody has insurance doesn’t mean they can pay out-of-pocket for mammograms.”

Regular screening tests, such as mammograms, reduce the chance of dying from breast cancer. A screening mammogram is the most effective screening test used today to find breast cancer in most women. A diagnostic mammogram is like a screening mammogram, but more images of the breast are taken to examine abnormal findings more closely.

If Alisa has normal results from her next diagnostic mammogram, she will return to having annual screening mammograms, which are covered under her insurance.

“I tried to explain to my doctors that I can’t keep paying to have diagnostic mammograms every year,” Alisa said. “If I had a second income coming in and I wasn’t paying off medical debt, things would be different for me. I don’t qualify for any type of Medicaid. I try my best and do my best. I am grateful Susan G. Komen was able to help me when I needed it.”

The Screening & Diagnostics Program is part of the suite of services offered through Komen’s Patient Care Center. Komen is focused on ensuring all people receive the care they need through the Patient Care Center, which seeks to remove barriers and serve as a dedicated breast care partner, helpful guide and support resource throughout the breast health care journey.

The Patient Care Center supported nearly 26,000 people last year through the Breast Care Helpline, Screening & Diagnostics Program, Financial Assistance Program and Patient Navigation. People can access the Patient Care Center by calling or emailing the Breast Care Helpline to receive breast health information and access to resources, like the Komen Screening & Diagnostics Program. 

“I would encourage people to keep up on their mammograms and know that you can get help through Susan G. Komen to pay for it if you can’t afford it,” Alisa said. “I’m very fortunate that I actually kept up on my mammograms.”

Komen’s Helpline specialists are available to breast cancer patients and their loved ones connect to needed services, resources and information about applying for a mammogram voucher through the Screening & Diagnostics program. Call 1-877-GO-KOMEN or email helpline@komen.org to connect with a specialist. The Susan G. Komen Screening & Diagnostic Program is available to provide financial support for breast cancer screening and diagnostic services for residents of the following metropolitan areas: Atlanta, Georgia; Chicago, Illinois; Fort Worth, Texas; Houston, Texas; Madison, Wisconsin; Philadelphia, Pennsylvania; Washington, D.C.; and Virginia Beach, Virginia. The Helpline can help people outside these areas identify other potential resources.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.

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Impact of the Signing of the Inflation Reduction Act on the Breast Cancer Community https://www.komen.org/blog/inflation-reduction-act-impact/ Tue, 16 Aug 2022 23:59:00 +0000 https://www.komen.org/?p=32096 The Inflation Reduction Act (IRA) singed into law by President Joe Biden includes provisions long supported by Susan G. Komen’s Center for Public Policy that will benefit the breast cancer community.

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After more than a year of debate and negotiations, sweeping legislation was signed into law today related to health care, climate and tax policy. Dubbed the Inflation Reduction Act (IRA), the measure includes provisions long supported by Susan G. Komen’s Center for Public Policy that will benefit the breast cancer community:

  • Millions of Americans, including breast cancer patients and survivors, will continue to receive financial support for private health insurance premiums. The IRA extends these enhanced subsidies for middle-income Americans, called advance premium tax credits, which were enacted in 2021 as part of the American Rescue Plan, a COVID-19- related relief package. These subsidies were set to expire by the end of the year, but now have been extended for 3 years.
  • The IRA also includes reforms to drug benefits under the Medicare program. Beginning in 2024, the IRA eliminates the current 5 percent patient coinsurance cost for Part D catastrophic coverage and expands eligibility for Part D low-income subsidies. In 2025, the law lowers Medicare patients’ out-of-pocket costs, capping them at $2,000 per year, with the critical new option to break that amount into affordable monthly payments.

Komen’s Center for Public Policy has long pushed policymakers to make health insurance more affordable and lower patients’ out-of-pocket costs. Komen was disappointed the legislation did not extend the provision to close the Medicaid gap to ensure continued coverage for Americans living in the 12 states that have not expanded the program. However, the health provisions in the IRA are welcomed changes that will benefit Americans and is an important step in the right direction.

Congress is paying for these essential patient support programs and protections using reforms to tax and drug reimbursement systems. Regarding prescription drug policy, the IRA requires manufacturers to pay a rebate back to the government if they raise prices higher than inflation starting in 2023. The IRA also will allow Medicare to negotiate prices for certain high-cost, single-source drugs with large expenditures, starting in 2026.

Komen will be monitoring implementation closely to ensure the breast cancer community is not negatively impacted by these reforms.

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Caring for Caregivers of Those Living with MBC https://www.komen.org/blog/caring-for-caregivers-of-those-living-with-mbc/ Wed, 10 Aug 2022 19:39:00 +0000 https://www.komen.org/?p=31830 cancer impacts many people beyond the individual who is diagnosed. Family and friends can be strong sources of support throughout diagnosis, treatment and beyond.

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Breast cancer impacts many people beyond the individual who is diagnosed. Family and friends can be strong sources of support throughout diagnosis, treatment and beyond. At the same time, caregivers may also need social support. Krista Park Berry, Susan G. Komen’s Breast Care Helpline Director, discusses the importance of caregiver support in our latest Wellness Wednesday Video.

“A caregiver can be someone caring for a spouse or a parent, an extended family member or even a friend or neighbor. Caregivers play a significant role in health care and are often a main source of valuable information about the patient for their medical team,” Krista said.

“Depending on the severity of a patient’s diagnosis, a caregiver’s duties can range from stopping by periodically to drop off groceries and to do light cleaning to providing live-in assistance with daily routines,” she said. “Part of caregiving can be providing informational support, really being there to gather the data about the diagnosis, the treatment and communicating with the medical team.”

Krista encourages caregivers to remember the importance of their health and to prioritize time for self-care.

“We always encourage caregivers to take care of their own health,” she said. “Please do find time for self-care so that you can be strong enough to take care of your loved one. Seek and take that support, accept those offers of help, even when it may be hard to.”

Caregivers can take advantage of the support resources listed on Komen’s website. Komen offers an online support community through our closed Komen MBC group. The Facebook group provides a place where those living with MBC, and those who love them, can find support, friendship and information. Visit Facebook, search for Komen Metastatic Breast Cancer (Stage IV) Group and request to join the closed group.

Krista also recommends caregivers explore the resources available through CaringBridge, Lotsa Helping Hands and Triage Cancer.

“Websites like CaringBridge and Lotsa Helping Hands can help you manage communications to family and friends, as well as set up meal trains or slots so people can help you with transportation and other activities,” Krista said.

“A lot of times, caregivers are also juggling a job or their own families on top of caregiving. When you’re a caregiver, know that there are resources you can access for taking time off work, managing finances, replacing lost wages and even estate planning.”

Komen’s Breast Care Helpline is available to help connect caregivers to support resources by calling 1-877 GO KOMEN or emailing helpline@komen.org.

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