Inspiring Stories | Breast Cancer Research Foundation https://www.bcrf.org/blog/inspiring-stories/ The mission of the Breast Cancer Research Foundation is to prevent and cure breast cancer by advancing the world's most promising breast cancer research. Thu, 14 Mar 2024 14:37:39 +0000 en-US hourly 1 https://www.bcrf.org/wp-content/uploads/2023/01/favicon.ico Inspiring Stories | Breast Cancer Research Foundation https://www.bcrf.org/blog/inspiring-stories/ 32 32 Research Is the Reason I Can Cross the Finish Line https://www.bcrf.org/research-is-the-reason-2023-triple-negative-breast-cancer-madeline/ Tue, 27 Feb 2024 15:32:21 +0000 https://www.bcrf.org/?p=26442 After being diagnosed with triple-negative breast cancer in her 20s, Madeline credits research for getting her back to health so she could complete her fifth marathon

In January 2020, while finishing graduate school in London, Madeline McCloughan found a lump in her left breast. Alarmed by this discovery, she visited her doctor, who told her to keep an eye on it. After a month, when it didn’t go away, she went in for an ultrasound and breast biopsy.

“That was over the course of three appointments, and then it was March 2020,” she remembered. “It looked like the U.S. was going to shut its borders, so I made the decision to come back and finish my degree remotely.”

On March 15, 2020, Madeline made it back to her hometown of St. Paul, Minnesota, and two days later, she received a phone call from her doctor back in London.

“He shared my test results that showed it was cancer,” she said. “I was alone when I found out, and it was like an out-of-body experience.”

Madeline soon found out she had stage 3, triple-negative breast cancer (TNBC), an aggressive form of the disease that disproportionately impacts younger women and lacks many targeted treatments—making it a major focus of BCRF’s annual research investment.

“There weren’t any women close to me that I knew that had breast cancer,” she said. “I never thought it was something that happened to people in their 20s, and I wasn’t aware of that subtype either.”

Right as she was about to start chemotherapy, Madeline developed a slight fever. Since she had traveled recently, her doctor tested her for COVID-19. The test came back positive, delaying treatment for nearly two weeks so she could quarantine.

“Having COVID at the beginning, when there were still a lot of unknowns, was tough,” she said. “The first few weeks after your diagnosis are probably when you need a hug the most.”

In the end, Madeline completed several months of chemotherapy, had a double mastectomy, and finished 28 rounds of radiation right before the end of 2020. Because of the pandemic, Madeline was forced to undergo most of these treatments alone.

Surgery, of all her treatments, was the hardest part of her cancer experience.

“I wasn’t mentally prepared for the impact of surgery. I didn’t have a reference point in the same way that I did for chemotherapy since people talk about it much more,” she said.

Now that treatment is behind her, Madeline is grateful to have had a complete response to treatment but still navigating the complex survivorship experience.

“Life post-treatment is like a roller coaster,” she said. “It’s an excellent lesson in giving yourself grace. Sometimes things go really well, and sometimes things are hard. But I think it’s gotten easier with time.”

Running has always been one of Madeline’s passions, and prior to her cancer diagnosis, she had completed four marathons and was training for her fifth. She was thrilled to be able to start training again.

“Running is central to my identity, and I told my oncologist at my first appointment that I’m going to run a marathon when all this is over,” she said.

To cross the finish line of that fifth marathon and celebrate putting breast cancer behind her, she invited friends and family to join her in running the 2021 Twin Cities Marathon on Team BCRF.

“It was so special to have all my loved ones get together and run to raise money for BCRF,” she said.

Madeline alone raised an incredible $21,791 for breast cancer research—more than she ever expected—and her friends and family’s support helped push the entire Twin Cities team to raise more than $52,000 total. It made crossing the finish line that much more gratifying.

Madeline’s experience with breast cancer also showed her the importance of research firsthand. She credits it for the fact that her chemotherapy regimen was shorter and that she was offered more treatment options. Because of its aggressiveness and fewer available therapies, TNBC especially needs more research, Madeline said.

“We need research to come up with treatment options,” she said. “I benefitted from the women before me who went through studies and trials, and so I want to do what I can to pay it forward.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research is the Reason I Can Be a Voice for Others https://www.bcrf.org/research-is-the-reason-i-can-be-a-voice-for-others/ Tue, 06 Feb 2024 21:39:08 +0000 https://www.bcrf.org/?p=26208 Reverend Dr. Tammie Denyse shares how research helped her survive breast cancer—and why it needs to do better for Black women

Reverend Dr. Tammie Denyse was driving with her kids, then 18, 11, and 10 years old, when she got a call from her physician that she had breast cancer. She was only 39 at the time. For several months prior, she’d been working with doctors to figure out why she had been experiencing excessive vaginal bleeding. Tammie had recently gotten a mammogram as part of the investigation.

She remembered her doctor laughing and saying, “I bet you weren’t expecting to hear that on this call.” The news—and her doctor’s insensitivity—shocked her. She thought to herself: Is this real?

Before her diagnosis, Tammie didn’t have much familiarity with the disease. No one in her family had had breast cancer—or so she thought. While her genetic tests were negative, she would eventually discover a hidden history of breast cancer on both sides of her family tree. 

Black people are very prideful,” Tammie said. “Because of our trauma and our history of not being seen as humans, Black people have been conditioned to present in a manner to not show weakness. And so, in my home growing up, we were taught ‘What goes on in this house stays in this house,'” she said.

After her diagnosis was official, Tammie’s next step was to find a surgeon, but her doctor offered no guidance. Fortunately, she was able to find an exceptional surgeon on her own who put her at ease. 

Tammie learned she had multiple fast-growing tumors that were estrogen receptor–positive, and her treatment course would involve surgery, chemotherapy, radiation, and five years of hormone therapy to reduce her risk of recurrence. She made it a point to never go to her appointments alone, not only so she could have support but also to help understand what was occurring.

“I didn’t want to ask the question, ‘Am I going to die?’ We’re all going to die. I knew the answer to that question,” she said. “But I wanted to know what treatment plan my doctor had to help me live.”

There were moments during treatment that Tammie, now 58, didn’t think she’d be able to continue. But the support from her family and community kept her going.

“The hope in my children’s eyes told me that I had to survive. My children gave me the push I needed to keep fighting even when treatments felt absolutely overwhelming,” she said. She praises God, her family, her community, and her medical team for saving her life. “No one survives cancer alone.”

When her oncologist found a clinical trial that she qualified for that was testing the efficacy of a 14-day chemotherapy regimen versus a 21-day regimen, she asked how Black women were responding to the trial. “He said, ‘I don’t know.’ I told him that was unacceptable,” Tammie said.

She was offended to be offered a treatment and trial opportunity without any knowledge about how it was impacting women who looked like her. By then, Tammie had learned the devastating fact that Black women are 40 percent more likely to die from breast cancer than white women and other racial groups.

“I chose to participate in the clinical trial because of the lack of Black women enrolled in it. If they didn’t have enough representation for whatever reason, I was going to be part of the solution to diversify clinical trials,” she said. “What became prevalent for me was that not only did we need to understand how to save Black women, but also to make sure Black and brown people are represented in clinical trials.” 

Tammie’s advocacy for Black women diagnosed with breast cancer didn’t stop after her successful treatment. She went on to co-found the nonprofit Carrie’s TOUCH with her former caregiver and late sister, Lynne Rankin-Cochran, to support Black women with breast cancer and understand how the disease affects them.

“At that time, if you Googled ‘Black women and breast cancer’ nothing came up that talked about us surviving this disease, she said. “The needle hasn’t moved. We still haven’t closed that forty percent gap in mortality between Black and white women. Carrie’s TOUCH fights every day to end it.”

Tammie wanted to research why, despite gains in breast cancer survivorship overall, this disparity still existed. So following a research project Tammie conducted for her master’s thesis, she took the data gathered from her research and invited Dr. Annette Stanton to partner with her on this endeavor.

“Oftentimes you get a white researcher or a non-Black researcher who’s curious about Black people. And they come up with research for Black people to answer their hypothesis. But what’s missing is having a Black person who understands the culture,” she said. 

Together, they co-created Project SOAR (Speaking Our African American Realities), which was partly funded by BCRF. The project looks at the unique experiences of Black women diagnosed with breast cancer—as told by the women themselves in focus groups called “Gatherings” with Tammie and Dr. Stanton. Their ongoing work has the potential to help create and test coping skills and interventions to support Black breast cancer survivors. 

“Dr. Stanton has been a phenomenal co-principal investigator,” she said. “We understand the task at hand, and we work well together.”

“Diversifying clinical trials and dedicating significant resources to studying breast cancer in Black women will save lives,” Tammie added. “Research is what fuels innovation. Therefore, it is imperative that we focus our attention on the people who are suffering and being impacted the most by this disease.”

Tammie’s deepest desire is for every woman diagnosed with breast cancer to have the same hope, resources, and opportunities to not only survive this disease—but to thrive.

“Activist Angela Davis inspires me to ‘no longer [accept] the things I cannot change’ and instead ‘to [change] the things I cannot accept.’ Therefore, I will continue to use my voice to advocate for patients who cannot, will not, or do not know how to advocate for themselves,” Tammie said. “Carrie’s TOUCH and Project SOAR are the vehicles through which we will fight for equity in research and drive change.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research is the Reason I’m Determined to Help Prevent Breast Cancer https://www.bcrf.org/research-is-the-reason-im-determined-to-help-prevent-breast-cancer/ Wed, 20 Dec 2023 00:20:02 +0000 https://www.bcrf.org/?p=26032 How a tragic loss inspired BCRF investigator Dr. Melinda Irwin’s focus on breast cancer risk reduction

As she was finishing her master’s degree in exercise physiology, Dr. Melinda Irwin came across a just-published study in the Journal of the National Cancer Institute by the late cancer epidemiologist Dr. Leslie Bernstein. In what would later be considered a landmark study, researchers showed that regular exercise before menopause could significantly reduce a woman’s breast cancer risk. Several things clicked as Dr. Irwin read the paper.

“At the time I was thinking, Do I want to try for med school? Do I want to get a PhD? I knew that research informs clinical practice, but we weren’t there yet with research,” she said. “Reading that paper in 1994, I realized I definitely wanted to get my PhD and focus on exercise and breast cancer risk.”

Exercise science and kinesiology were natural interests for Dr. Irwin. Growing up, she was a nationally ranked gymnast, spending her teenage years competing around the country and throwing herself into five-hour-a-day training sessions.

There was another layer to Dr. Irwin’s interest in that 1994 paper: She had lost her mother to breast cancer just a few years prior.

After finding a lump in her breast on the eve of her 45th birthday, Dr. Irwin’s mother was diagnosed with metastatic breast cancer. Dr. Irwin was 16. 

At the time of diagnosis, her mother’s cancer had spread to her liver and, eventually, it spread to her bones. Dr. Irwin remembered her mother receiving chemotherapy, and that, at the time (it was the 1980s), cancer was a very private disease that few people talked about. Other moments from that time, she said, still stand out. 

“Memories will pop up,” she said. “On a Friday that spring, we were supposed to go out for photos for the junior prom. My mom had had her hip replaced a month prior and wasn’t supposed to bend more than 90 degrees, but she bent a little too far and her hip dislocated. I remember calling 911 and riding with her in the ambulance that night.” 

Dr. Irwin’s mother lived with metastatic breast cancer for two and a half years, passing on her son’s birthday. Toward the end of her mother’s life, Dr. Irwin was a freshman in college, living far from home. That winter, her parents drove down to see her compete in a gymnastics meet at school—and it turned out to be the last time Dr. Irwin saw her mother before it was clear that her breast cancer had spread to her brain. 

“I remember she sat me down and was asking if I was happy and telling me she loved me,” Dr. Irwin said. “It was very touching—and in a way it was like a goodbye, because the next week she forgot her phone number, and then she was in the hospital. Somehow maybe she knew she was terminal.” 

Her mother’s experience with breast cancer radically shaped Dr. Irwin, who described herself as a tough kid who didn’t like to show emotion in front of other people. 

“I made a promise to myself that I was going to open up—I didn’t want to be closed off from people,” she said. “I didn’t want to hide things that were challenging to talk about. I said I wanted to be more open as a person.” 

Dr. Irwin’s mother’s death also inspired her to make cancer prevention the focus of her career—even though the field was still in its infancy. After reading Dr. Bernstein’s seminal study on exercise and breast cancer, Dr. Irwin got her PhD and went on to work under pioneers in the field including Dr. Bernstein, Dr. Barbara Ainsworth, and BCRF investigator Dr. Anne McTiernan

“With them, I published some of the very first and most highly cited papers showing how physical activity before and after diagnosis was associated with breast cancer mortality: the higher activity levels, the lower your mortality from breast cancer,” she said.

Today, Dr. Irwin is an endowed professor and the associate dean of research at Yale School of Public Health and deputy director overseeing population sciences research at Yale Cancer Center. A BCRF investigator since 2013, she is studying how diet and exercise interventions impact patients’ adherence to chemotherapy and endocrine therapy, along with patient-reported outcomes, biomarkers, and body composition parameters.

“Probably the most important, impactful, and rewarding gift I’ve ever received was to get BCRF funding, because it allows you to test out-of-the-box ideas and hypotheses that are very preliminary,” she said. “The research that is going to inform the next breakthrough is from these findings.”

When Dr. Irwin looks back at her career, she stresses that her research would not have been possible without BCRF funding and the leaders she worked with in the field. Today, she’s driven to mentor the next generation of researchers and help patients now and in the future. And, of course, in all things she is driven by her mom’s experience—and how far research has come since and still has yet to go. 

“On a daily basis, I’m inspired by my mom and how brave she was,” Dr. Irwin said. “I feel confident that if she was diagnosed today, she would have survived, because she would have been diagnosed earlier and there would have been targeted therapies for her.” 

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research is the Reason I Can Show Up for Myself and for My Family https://www.bcrf.org/research-is-the-reason-i-can-show-up-for-myself-and-for-my-family/ Tue, 12 Dec 2023 17:06:32 +0000 https://www.bcrf.org/?p=25979 After being treated for breast cancer twice, Marianne is grateful for the perspective she’s gained and for the role that research played

It was December 2020, as the pandemic raged on, and Marianne Santee was going in for her annual mammogram and ultrasound. This was her third time getting screened, but this time, something unusual was detected. Her doctor followed up to let her know that she had cancer in her right breast. 

She received the devastating news over the phone while at her son’s tennis lesson. 

“It sounds cliche to say, but it felt like this wasn’t happening to me. This was happening to someone else—someone not as healthy as me,” the 43-year-old wife and mom of two children said. “I was in such shock and disbelief that I couldn’t grasp anything the doctor was telling me.”

Marianne began her treatment the next month, starting with a lumpectomy in January 2021, followed by eight rounds of chemotherapy beginning in March, and finally, one month of daily radiation. After, she began tamoxifen, a daily hormone therapy, to reduce her risk of recurrence.

“Being a mom, it was extremely difficult for me to take time to rest, even as my body was demanding it. I was used to being active and going a million miles a minute,” she said. “I felt like if I was lying in bed, I was giving in to being sick.”

After eight months, Marianne was grateful and relieved to finally finish treatment, but, unfortunately, that relief didn’t last. As the end of the year approached, she had a nagging feeling that something was off. The following spring, she got an MRI that confirmed she had a recurrence.

“I was despondent. It felt like everything around me was unraveling,” she said. 

Undoubtably, the hardest part was telling her children again after she assured them that her treatment was complete and that their family could finally move forward.

“As a parent, my kids put so much trust in me and look to me to provide comfort and assurance. I gave them confidence that this would be something we’d quickly put behind us,” she said. “How could I tell them I was wrong and that this was happening again?”

A couple weeks after the MRI, Marianne underwent a double mastectomy at her doctor’s recommendation, followed by reconstruction five months later, and today she remains on tamoxifen.

Marianne’s diagnoses forced her to put herself first, which initially was challenging as a busy marketing professional, wife, and mother. Her family, she said, was incredibly supportive—giving her the strength and encouragement she needed to move through this difficult experience. Over the last two years and across the two diagnoses, she’s gained a clear perspective on the few things that are most important to her.

“As moms, we tend to put everyone’s needs before ours. But this experience forced me to put myself—my health—ahead of carpools, activities, and home-cooked meals,” she said.

And at a time when everything around her felt unstable, Marianne said research was a grounding force.

“A lot gets thrown at you when you learn you have cancer. You quickly try to get up to speed on new vocabulary and scientific terminology, while also dealing with big emotions and wondering how this is happening to you. But research is the one thing that is undisputedly clear,” she said. “When so much is uncertain and you’re looking for answers, I took a lot of comfort in the explanations my trusted team of doctors provided because it was grounded in research.” 

After she discovered BCRF during her diagnosis and treatment, Marianne became a proud supporter of the Foundation’s mission, starting a BCRF fundraiser at her workplace that raised more than $5,000 for lifesaving breast cancer research.

“BCRF is singularly focused on research—the one thing that will hopefully put an end to breast cancer,” she said. “For our future generation of women, for my daughter, there’s no other way we’re going to find a cure if not through research.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research is the Reason My Breast Cancer Was Treatable https://www.bcrf.org/research-is-the-reason-my-breast-cancer-was-treatable/ Tue, 21 Nov 2023 18:23:48 +0000 https://www.bcrf.org/?p=25936 Diagnosed with stage 3 breast cancer just five months after giving birth, Lauren Bygland says research and running helped give her the best outcome

Breast cancer never crossed Lauren Bygland’s mind in the weeks and months following the birth of her son, Max, in 2018. After all, she was 34 and healthy—busy adjusting to life with a newborn while trying to fit in a few runs and catch up on some precious sleep.

After she noticed a hard lump in her left breast while breastfeeding, her doctor diagnosed her with mastitis. For two weeks, Lauren tried the usual tips to alleviate a clogged milk duct, but nothing was working.

At that point, Lauren had a creeping sense that there was something different about this lump, which wasn’t painful (like mastitis often is) or changing in size. However, her doctor told her to take another two weeks to see if the size went down. Instead, Lauren wanted to get peace of mind and found a different OBGYN with an immediate opening.

“I was pretty convinced it was nothing, but then the second OB-GYN ordered a mammogram. Even then, that was a manageable anxiety,” she said. “But from the minute they did the mammogram onwards, I knew something was wrong. When I got the call that I had cancer, it was so world-altering. I remember calling my husband crying and thinking, What would happen to Max if I died?”

The day she’d gotten the mammogram, the doctor told Lauren immediately that there was something suspicious in her left breast and ordered a biopsy. She was officially diagnosed with breast cancer in mid-January 2019 and soon after learned it was stage 3 and HER2-positive. Early on, Lauren also underwent genetic testing because of her young age and got another shock: She carried the BRCA2 gene mutation.

That winter, she did six rounds of chemotherapy with Herceptin and Perjeta—two HER2-targeted therapies that she continued for a full year after she moved on from chemo to a double mastectomy and radiation.

One of the hardest parts of treatment, Lauren said, was navigating changes to her treatment plan—and there were several. 

Initially, she was going to have a single mastectomy, but then when she learned she carried the BRCA2 mutation, her doctors recommended a double mastectomy because of her high risk. Toward the end of treatment, her oncologist recommended she start taking hormone therapy preventively because of her BRCA2 status and the fact that her tumor had a very low amount of estrogen receptors.

“I think as a longtime runner, I’m able to look at a plan and say, ‘OK, this is what we’re doing and what’s going to happen.’ Any deviation was difficult,” she said. 

Since finishing active treatment for breast cancer in early 2020, Lauren has also had to undergo other unexpected changes of plan. Because BRCA2 mutations are also linked to a higher risk of ovarian cancer, she was being routinely screened with blood work and ultrasounds. In 2021, because of several cysts that turned out to benign, she had an ovary and two fallopian tubes removed.

Throughout breast cancer treatment and in the years since, Lauren found some control in the chaos by running—a sport she started as a teenager. Even though running “wasn’t particularly pretty” while she was getting chemo and other therapies, she said it helped her feel better both physically and mentally.

“It sounds corny, but I really do credit running with my grit and resolve. Running taught me to stay steady and put one foot in front of the other, and it made me feel like I could do this. I can do hard things,” she said. “Running always has been—and I hope for a long time always will be—part of my life.”
Research, too, gave Lauren confidence that she would come out on the other side of her diagnosis. 

Learning her BRCA2 status had a ripple effect in her family. Because Lauren learned her status, she was able to pass along that potentially lifesaving information to her paternal relatives. Her aunt underwent a preventative double mastectomy, and cousins and other relatives have gotten tested.

During treatment, Lauren also learned about the incredible progress that’s been made against HER2-positive disease specifically.

“Early on, turning to Dr. Google, it utterly terrified me to learn that HER2-positive breast cancer was the most aggressive. I saw it had worse survival rates, but I wasn’t paying attention to the dates of those articles,” she said. “Finding out that Herceptin had changed the game for HER2-positive breast cancer and then later Perjeta changed the game again, it really blew me away. Talking to my doctor and learning about those treatments, I felt significantly better.”

Lauren learned about BCRF on social media and was drawn to the Foundation’s focus on research—and specifically metastatic breast cancer research.

“It wasn’t lost on me that I was stage 3. Had I waited longer or not responded to treatment, this could have been a different story,” she said. “I had options but there are not enough options for people with stage 4. That’s something these women and men live with forever.”

In 2022, Lauren crossed the finish line of the TCS New York City Marathon on Team BCRF, raising more than $5,000 for research.

“Research can really change the game,” she said. “If there wasn’t a drive to research, I wouldn’t be here right now.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research Is the Reason I Can Change the Conversation About MBC https://www.bcrf.org/research-is-the-reason-i-can-change-the-conversation-about-mbc/ Wed, 25 Oct 2023 21:35:33 +0000 https://www.bcrf.org/?p=25815 After a metastatic breast cancer diagnosis at 29, Amanda Quick found new purpose

Amanda Quick felt a small lump under her left armpit one day in the shower. Having just gotten a COVID-19 vaccine—knowing the shot could cause temporarily swollen lymph nodes—and feeling run ragged by work at the time, she didn’t worry. Plus, at 29 years old, breast cancer wasn’t on her mind.

Still, as someone who is fastidious about getting preventive care and prioritizing her health, she checked with her doctor, who told her to wait a few weeks and call back if the lump was still there.

“Then the lump went from pea-sized to much larger and very hard,” she remembered. “I thought, ‘Yeah, something’s up,’ and called my mother.”

Amanda made appointments with her OBGYN, who ordered an ultrasound of the area, and with her primary care doctor for the annual physical and routine blood work she was due for anyway. After the radiological team performed the ultrasound of the spot under her armpit, Amanda tried to distract herself and keep her mind calm about the situation when she wasn’t at work. Later in the week, while off hanging out with a friend by a pool, Amanda received a call from her primary care doctor.

“She said, ‘Your bloodwork came back, and something is very odd,’” Amanda remembered. “I had extremely, extremely elevated blood levels in my liver. The doctor said it was so concerning because the levels were what you would see with someone who is a heavy drinker.”

Amanda’s doctor ordered an ultrasound of her liver, which detected some suspicious spots, so her doctor ordered a CT scan. At this point—after getting two ultrasounds and the CT scan—doctors suspected that the armpit lymph node lump and liver spots were connected.

“I’m still not thinking it could be cancer, but my confidence level definitely started to change, and I tried not to relent to thinking the worst,” she said.

After several more tests, including a mammogram, and biopsies of her breast and liver, her diagnosis was confirmed: Amanda had metastatic breast cancer (MBC).

“I remember walking down the street in New York City and just crying,” she said.

Amanda soon went into preparation mode while waiting to get in to see an oncologist. Figuring she’d have chemotherapy, she talked to her hairdresser about a wig. She researched surgery, sought out breast cancer organizations, spoke to other women with breast cancer, met with her pastor for spiritual guidance, and began to gather support from family and friends. After considering two oncology opinions, she put together her care team.

“I was preparing for all of this, not realizing that ‘metastatic’ is a different treatment plan. It’s not even about the stage of breast cancer, which is one of the first questions people ask,” she said. 

At first, Amanda was treated with a CDK4/6 inhibitor, approved just six years ago, along with aromatase inhibitors. She received monthly injections for her bone health and estrogen suppression, and she gets scans every six months.

“My doctor treats ‘it’ like it’s a chronic disease like diabetes or high blood pressure,” she said. “Technically, there’s no cure, and I’ll be on medicine for the rest of my life. But I can still live an amazingly full life because of research, and I am grateful.”

Her attitude remains unchanged even though Amanda, now 31, received a positive biopsy last month despite getting closer to NED (no evidence of disease). Her treatment regimen had run its course with evidence of the disease in her bone. But thanks to advances in the treatment of MBC, she has other options. 

“With MBC, cells eventually become resistant to treatment,” said Amanda, who recently switched to oral chemotherapy. “Having another line of treatment has given me an enormous amount of hope, but it also means that I get more time to live with a quality of life that I may not have otherwise. Because of additional treatments, I don’t have to live in fear that there are no other options for women living with MBC.” 

Still, the two-plus years Amanda has lived with MBC have not been easy. She has had to confront her mortality at an incredibly young age, face the reality that she may be unable to carry children, and cope with the additional complexities of dating. As a Black woman, she has had to learn to advocate for herself in the medical system and to help educate on the cancer stereotype. But health-wise, she feels she is able to live something of a “normal” life most days.

“Because of what we see in the media and online, when we think of cancer, we think of a person who has no hair and appears weak. It’s sometimes difficult to tell people about my diagnosis because I don’t look sick. People don’t understand this is a lifetime thing because I look physically good or don’t complain. But it does not mean me and my body are not fighting every day to thrive,” she said.

But Amanda has also been inspired to find purpose in her diagnosis and community with other young women impacted by breast cancer. Amanda joined the Board of Directors for The Pink Agenda (TPA), a nonprofit organization dedicated to raising awareness of breast cancer among younger women and raising funds for BCRF. Last October, Amanda began speaking out about her diagnosis very publicly—joining BCRF partners Ann Taylor and LOFT in their “Sisterhood of Strength” campaign and sharing her experience on Good Morning America and Suffering the Silence

“I was nervous to share my story so publicly, because when you google MBC, you see someone has a few years to live,” she said. “But when I go to the cancer center, I see people living with it for decades. I want to share my story and my experience because we need to continue to change the conversation around MBC. There’s urgency, but there’s also so much more hope.”

That hope, Amanda said, is because of research—and the incredible pace of progress in recent years. 

“Research is the reason we’re seeing extended life for women who have later-stage diagnoses. It’s the reason that we’re detecting breast cancer earlier. It’s the reason that there are a lot of women like me who are alive and thriving today,” she said. “Even five years ago the outlook for MBC was bleak, but people who have MBC now talk about how lifespan and quality of life is getting so much better. I have benefitted tremendously from research.” 

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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The Power of Pink (Lemonade) https://www.bcrf.org/the-power-of-pink-lemonade/ Thu, 12 Oct 2023 19:27:34 +0000 https://www.bcrf.org/?p=25626 The Black & Yellow for Pink Lemonade Stand event held at Acrisure Stadium last weekend raised over $53,000 for life-saving breast cancer research—and set a world record.

Lemonade may not be the most common tailgating beverage, but it was flowing before the Pittsburgh Steelers and Baltimore Ravens game on October 8—and for a good cause. Before kickoff, BCRF and the Pink Lemonade Stand Challenge held the Black & Yellow for Pink Lemonade Stand at Acrisure Stadium in Pittsburgh, PA, to raise funds for lifesaving breast cancer research.

Pro Football Hall of Famer Jerome Bettis and Cindy Citrone, who are both members of BCRF’s Board of Directors, were there to serve pink lemonade. Donations were made to fund the groundbreaking work of the foundation’s investigators. This year BCRF is funding seven researchers right in Pittsburgh.

For Bettis, the event was personal. After his mother was diagnosed with breast cancer, he was deeply motivated to join BCRF and advance its mission to end the devastating disease.  

“Here in Pittsburgh, we are passionate about all things sports, coming together for a great cause, and breaking records, of course,” said Bettis.

That passion was on full display at the event, which raised $53,122 setting a new Guinness World Record for the most money raised at a lemonade stand in 24 hours. The Black & Yellow for Pink Lemonade Stand was generously sponsored by members of the Pittsburgh community such as Citrone 33 Foundation, the Bus Stops Here Foundation, Giant Eagle, Kendra Scott, and many others.

Donations to BCRF support over 250 researchers globally—including the work of Drs. Wendie Berg, Olivera (Olja) J. Finn, Adrian Lee, Steffi Oesterreich, Priya Rastogi, Jonathan Silverstein, and Norman Wolmark at The University of Pittsburgh.

In an innovative collaboration, BCRF joined forces with the University of Pittsburgh to accelerate breast cancer research through the launch of the Global Data Hub, the first-ever centralized database to house information collected by scientists around the world. Dr. Silverstein and his team lead data coordination, ensuring top regulatory and privacy standards while simplifying data access.

To make a donation to the Black & Yellow for Pink Lemonade Stand’s efforts, click here

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Research Is the Reason I Live Each Day to the Fullest https://www.bcrf.org/research-is-the-reason-i-live-each-day-to-the-fullest/ Mon, 09 Oct 2023 16:36:15 +0000 https://www.bcrf.org/?p=25610 Ellen Jane Baker credits research for giving her time with her daughters and a mostly normal life with metastatic breast cancer

For Ellen Jane Baker, cancer, unfortunately, always felt like something she’d inevitably be diagnosed with. She had lost her grandmother and both of her parents to the disease (her mother at 52 years old from lung cancer and her father at 68 from pancreatic) and watched other family members be diagnosed.

“Everyone in my family had cancer,” she said. “I thought it was just a matter of time. It was a ‘when,’ not an ‘if.’”

For a long time, Ellen dealt with complications from fibrocystic disease in her breasts. At 38 years old with two young daughters at home, she had had a large, pre-cancerous mass removed, after which she started being screened more often. She estimates that she had about 25 biopsies over about 15 years.

By 2005, she was weighing whether to have a prophylactic double mastectomy and instead opted to have a breast reduction. For a year after, a persistent pain in her left breast nagged at her.

“The through line of my whole experience with cancer is I knew something was wrong and everybody was telling me there was nothing wrong,” she said. “The plastic surgeon kept telling me, cancer doesn’t hurt, but after a year, I insisted that they do a mammogram and a sonogram.”

In 2006, when she got the call that she did, in fact, have cancer in her breast, Ellen wasn’t terribly shocked in the moment.

“I hung up the phone, and I went to Home Depot to buy a new toilet for the bathroom,” she remembered. “I knew that with all the trouble I had had over the years that this was going to happen. I just didn’t realize it would happen so quickly after I had the reduction, because supposedly the biopsies they did on my tissues were clean.”

Ellen was diagnosed with hormone receptor–positive breast cancer and began treatment with chemotherapy, which was “just miserable—there is no other way to say it.”

At the time of her first diagnosis, her daughters Sara and Katie were 17 and 15, respectively. Even when she was sick from treatment, she made family time a priority, Sara remembers.

“She made us breakfast before school every day and took me prom dress shopping in a wheelchair,” Sara said.

After having a double mastectomy and reconstruction, she then spent years in and out of corrective surgeries because of ongoing issues with her implants. Doctors also monitored a suspicious lesion on her rib that they had detected in 2006, and she kept up with her regular check-ups. As she marked five years and then 10 years since her diagnosis, Ellen thought about how her risk of recurrence seemed further and further behind her.

Then, at the beginning of 2020, Ellen started experiencing a startling pain on her side that felt “like somebody was putting a sword through my rib.” A mammogram, ultrasound, and MRI were all clear for cancer. But after a year of physical therapy, the pain hadn’t gone away.

“I just kept thinking, ‘This is not right.’ I finally got someone to order a bone scan and a CT scan,” she said. “I was waiting in the lobby of the cancer center, and my email said I had new MyChart results. They said ‘metastatic disease.’ It was unbelievable.”

Both Katie and Sara said they knew something was wrong when the group FaceTime call came through.

“She said, ‘Are you sitting down? Because I need you to be strong with me,’” Katie said. “When she told us, I felt like I got wind knocked out of me. I went over to her house and didn’t leave for days.”

Over the last two years, Ellen has sought additional opinions from leaders in breast cancer research. She found an oncologist who not only an expert on breast cancer mutations and how they affect disease progression but was willing to think outside the box and involve Ellen in shared decision-making. 

“I now feel that I’m getting the benefit of all the great research that is happening,” she said.

Though her cancer has metastasized to her bones and lungs, the disease is under control and her first-line treatment has worked well to date. Like many people with metastatic breast cancer during the pandemic, she is vigilant about her health—masking in public, avoiding crowds, and eating outside at restaurants.

Confronting a recurrence 16 years after her first diagnosis was shocking, but Ellen tries to keep a positive outlook. She focuses on spending time doing things and being with people who bring her joy, and she continues to work as an executive coach—a career that gives her even more purpose now. But, Ellen said, just because she carries her diagnosis well, doesn’t mean it isn’t heavy or frightening.

“The first experience had an end date. This does not have an end date,” she said. “About 90 percent of the time I don’t think of myself as a cancer patient, but I do live in the perpetual unknown.”

A big reason Ellen has been able to feel “normal” so much of the time has been thanks to her daughters’ support.

“My mom is my best friend—and I feel super lucky for that,” Sara said. “I admire her because she’s a fighter. I love that she is fearless.”

Sara, who works in healthcare communications, was very familiar with metastatic cancer before her mom’s diagnosis, so she’s been able to help advocate for her mom and stay current on research.

“In my work, I hear about women and men living with metastatic disease for 10-plus years or longer,” Sara said. “The advancements we’ve made are inspiring, and they’ve made me feel a lot more hopeful.”

Ellen has always considered herself someone who lived life out loud because she had lost her parents at young ages. She’s deeply passionate about travel and experiencing other cultures.

“I’m determined to do all the things that they never did,” she said. “Cancer just made me more intent on doing what I wanted to do and seeing the places I wanted to see.”

Recently, Ellen and her daughter Sara checked a major bucket-list destination off her list: Bora Bora.

“After I got the call that I had breast cancer and got back from Home Depot, I remember spinning a globe we had in our living room. I thought, ‘What’s the furthest place in the world from where I am right this moment?’ It was Bora Bora,” she remembered. “I said to myself then: ‘That’s where I have to be in my head because I can’t be here.’ Now, 16 years later, I’ve finally visited.”

Ellen says research is the reason she can live a full life and have such meaningful time with her girls. Because they are also high risk for breast cancer, she hopes new breakthroughs can spare them the same experiences she had. 

Before her diagnosis what she knew about metastatic breast cancer was that it “equals death.” But in learning about the progress research has made, finding the right provider, and talking to other women who live with the disease, she is more optimistic—and feels she is on the cutting edge of future research.

“It’s very uplifting to think that this could be a long-term, chronic disease,” she said. “All this research is going to really help people survive a lot longer.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research Is the Reason I Can Keep Working to Support Science https://www.bcrf.org/research-is-the-reason-i-can-keep-working-to-support-research/ Tue, 26 Sep 2023 16:57:31 +0000 https://www.bcrf.org/?p=25038 BCRF staffer and mom Sadia Zapp knew she benefitted from research when she was diagnosed with breast cancer—and now she’s motivated to do even more to end the disease

Even though she was only about 10 years old, Sadia Zapp remembers when her then-25-year-old aunt was diagnosed with breast cancer. Her family didn’t talk about the disease openly, but Sadia knew her aunt was sick and can recall her aunt’s wig more than two decades later. 

Her aunt’s diagnosis—and the fact that it was at such a young age—stayed with Sadia from then on.

“It made me vigilant,” she said. “Breast cancer was a very explicit fear going back to my childhood, and it was always in the back of my mind. I knew the risk factors and what to be aware of when it came to my body.”

That personal connection to breast cancer also inspired Sadia to make health the focus of her career in nonprofit communications and public relations. When she saw a job opening at BCRF, she jumped at the chance to apply.

“One of the reasons I wanted to work at BCRF was because of my family history and the fact that I always feared I’d be diagnosed with breast cancer,” she said. “There were a couple of causes I really cared about, and breast cancer was one of them.” 

Last summer, seven years into working at BCRF, Sadia’s professional life and her personal life collided when that fear came true: At 36 years old, she was diagnosed with breast cancer.

For years, doctors dismissed Sadia’s request to start screening earlier. Providers said that she wasn’t high-risk because her aunt wasn’t a first-degree relative, and that other potential risk factors Sadia knew she had weren’t of major concern. In early 2022, after another conversation about her risk with a new doctor, Sadia underwent genetic testing, which found no known mutations like BRCA1 or BRCA2. It did however find “variances of unknown significance” of two other genes associated with breast cancer. But since the risk level of those genes was still unknown, her doctor didn’t take them into consideration. 

“I got the negative results, and I didn’t think about it again,” she said. “That July, we were also uprooting our lives. We bought a house and moved. And while we were unpacking boxes, I noticed a lump.”

Four weeks later, Sadia had the lump looked at with a mammogram and ultrasound. As she walked down what felt like an endless hallway to the radiologist’s office, all she could think was: Please, please, please let this be nothing.

“The radiologist sat me down, took my hands, and said, ‘There’s a lot going on in that right breast. I believe this is cancer,’” Sadia remembered. “Even though I had always been afraid this would happen to me, I still just couldn’t believe it. I sat crying in her office for quite some time and didn’t have a kernel of hope when I left.”

After countless phone calls, Sadia quickly assembled her care team and underwent several biopsies and tests to finalize her treatment plan and start as soon as possible. She was ultimately diagnosed with hormone-positive, HER2-negative breast cancer, the most common form of the disease, which had spread to her lymph nodes. Over four months, she got eight rounds of chemotherapy and then had a double mastectomy earlier this year followed by five weeks of radiation. After, she started hormone therapy along with a CDK4/6 inhibitor to reduce her risk of recurrence.

Knowing so much about breast cancer and the latest research was both a blessing and curse.

“When I was diagnosed, I didn’t have to Google anything,” she said. “But on the flip side, I knew all the stats. I knew the survival rates for regional breast cancer and that metastatic disease is on the rise in women aged 25 to 40. Those stats were what played on a loop in my head. I didn’t have an off switch.” 

The hardest part of her diagnosis was confronting her mortality as a wife and a mom to her son, Jake, who was four at the time. Sadia made a point—no matter what was going on or how she was feeling—to read bedtime stories to her son every night. 

“My son is all that matters,” she said. “This diagnosis brings all your fears to the forefront. Above all the treatment, the hardest thing was worrying that I might not be there for him.” 

After years of being immersed in breast cancer research working at BCRF, Sadia said she knows that decades of science led to breakthroughs and treatments she benefitted from. BCRF investigators have had a hand in advancing all the therapies she will be on for the next five years.

“The treatment that saved my life and the drugs I am taking every day now to ensure my future have been made possible, in some way, by BCRF researchers—people whose work I help support every day, people I know or have worked with at some point over nearly a decade. I’ve never felt more grateful to our scientists. 

“I’m here now and enjoying my son’s first year of kindergarten—thanks to research,” she said.  

But because her own risk was overlooked for years, Sadia also sees more clearly how much more research is needed to close gaps in screening and risk assessment, improve outcomes for young women, and end metastatic disease. And she’s more motivated than ever to play a role in changing the course of breast cancer.

“There are four million breast cancer thrivers in the U.S., and I promise every single one of them has lain awake at night worrying about this disease,” she said. “Only research can end their fear.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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Research Is the Reason I Have More Time with My Family  https://www.bcrf.org/research-is-the-reason-i-have-more-time-with-my-family/ https://www.bcrf.org/research-is-the-reason-i-have-more-time-with-my-family/#respond Wed, 13 Sep 2023 17:00:00 +0000 https://www.bcrf.org/?p=24772 Maria Rivas credits research for her health and for the chance to advocate for others 

Nutrition has always played a big role in Maria Rivas’ life, and she made a point to stay on top of her well-being. Even at age 70, she’d never had any health issues. When Maria was diagnosed with breast cancer, she was shocked. 

“I never expected to hear that news,” she remembered. “I didn’t have any discomfort or pain.” 

Last December, Maria went in for a routine mammogram. In the days following the appointment, she received a call from her doctor telling her that she would need a second mammogram and an ultrasound. This raised some questions in her head, but she didn’t know what to expect and wasn’t too worried.  

When she learned she had stage 2 breast cancer, the first thing she asked her doctor was, “How much time do I have?”  

Maria had a family history of cancer: Her sister had been diagnosed with breast cancer many years prior, and her dad had had prostate cancer. 

“Knowing that my sister had cancer, I was scared to even talk about it, or learn that I might get it too,” she said. 

Since Maria’s breast cancer was caught early and the lump was small, her doctors were hopeful.  

Earlier this year, Maria underwent a lumpectomy. While the tumor was biopsied, she met with her doctor, oncologist, and radiologist, who all remained optimistic that she would not need any further treatments. But, after the biopsy results came back three weeks later, they revealed she would have to undergo chemotherapy and radiation. 

“When I learned I had to have chemotherapy, I felt at peace. If there was anything left in my breast––be it large or microscopic––knowing it would be treated comforted me,” she said. 

While she held this mindset, nothing could fully prepare her for the side effects of treatment. About a week before her third chemotherapy session, she lost all her hair and her appetite. Her sense of taste shifted.  

“Every chemotherapy session meant I had to get better for the next one,” she said. “I was calm because I knew it was a big process—and this too would pass.” 

After chemotherapy, came radiation, which she finished this past summer. 

Through it all, she found her two daughters and six grandchildren to be her biggest support system.  

“One of the strongest medicines I’ve received throughout this process was their support,” she said. “My grandkids rub my bald head and say, ‘You look beautiful with no hair.’” 

Now with treatment over, Maria wants to advocate for others. As someone who benefitted from early detection, she is passionate about the importance of not ignoring your health and keeping up with annual mammograms. 

“One thing I learned is that we are not invincible. We must be prepared in life because it can change at any second,” she said. “I thought it’s never going to happen to me. But I’ve learned if diagnosed early we can get through this.” 

Maria also feels she has benefited from research—and that only through research will we continue to discover more ways to treat women with breast cancer, improve existing therapies, and save lives.  

“Research is the reason millions of women are alive—including me. The treatments that I have received are saving and extending my life,” she said.  

Read more stories from BCRF’s Research Is the Reason storytelling initiative here. 
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