Three Sisters, BRCA1 Mutations, and a Cancer Diagnosis While Pregnant

A lot has happened in Carolyn Searles’ life over the past year. She celebrated her 36th birthday last September by trying out for “Wheel of Fortune.” She wasn’t selected and joked that she was “devastated,” as anyone would be who missed out on the chance to appear on one of their favorite gameshows. But she had a beautiful 2-year-old daughter, was 16 weeks pregnant with her second child, and took a weekend trip away with her husband, Andrew, for her birthday, which washed away any lingering disappointment.

That is, until her fortune took a spin she didn’t expect.

When they returned home, Carolyn discovered a golf ball-sized lump in her armpit. The threat of cancer was something Carolyn has lived with since she was 29 years old and tested positive for the BRCA1 mutation, which significantly increases the risk of developing breast, ovarian, and other cancers. That threat—and watching her close friend die of inflammatory breast cancer—led Carolyn to get a prophylactic double mastectomy at 31. Her doctors informed her this surgery would reduce her chances of getting breast cancer to around 1% to 5%.

But here she was with a lump near her breast and awaiting the results of a biopsy. The MyChart notification came through, she scrolled down, and saw the word “malignant.” Her world stopped. Only a few moments earlier, her OB/GYN had handed her a sonogram of a beautiful baby boy. But now, with a stage 2B triple-negative breast cancer diagnosis, she did not know what would happen to her or her baby.

Over the course of the next year, she would learn how it’s possible to undergo some cancer treatments while pregnant. She would give birth to a healthy baby boy, Blake. She would be told her treatment resulted in no signs of cancer. And she would decide that others should know all of this is possible.

“I had no idea until it happened to me that you can receive chemotherapy when you’re pregnant,” Carolyn said. “People need to know that there’s a chance for survival for you and your baby. Even if I reach one person who’s in the same situation, then I feel like I’ve made a difference.”

Carolyn is one of seven survivors who shared their stories for the 2026 edition of the Cancer Progress Report, which is published annually by the American Association for Cancer Research (AACR). This year’s report was unveiled during a congressional briefing on Capitol Hill on September 16, just short of a year from Carolyn’s diagnosis. She was in attendance with her husband, and the next day, they were joined by her two sisters and mother-in-law as they returned to the Capitol—along with more than 300 others—for the Rally For Medical Research. Together, they wanted to make sure their congressional representatives heard Carolyn’s story—and what medical research meant to their whole family.

Three Sisters With a BRCA1 Mutation

It’s impossible to tell Carolyn’s story without telling her family’s story. Not only because they have been with her every step of the way, but because both of her sisters also have a BRCA1 mutation.

The eldest of the three, Emily Smith, always had a feeling something in their family was leading to a higher risk of cancer. Their aunt is a three-time triple-negative breast cancer survivor (still living “her best life,” per the sisters), and their father is a prostate cancer survivor. So, when Emily’s work offered direct-to-consumer genetic testing, she took them up on it. Tests like this for the BRCA1 mutation were not available when their aunt was first diagnosed with cancer, Emily said.

“It was thanks to research led by Mary-Claire King—which was funded in part by the National Institutes of Health (NIH)—that the BRCA1 gene was discovered,” Emily explained. “It is tremendous to think about the progress that has been made in screening and treatment for triple-negative breast cancer since our aunt was first diagnosed in her early 30s.”

Emily, who is a nurse practitioner in radiation oncology at Penn Medicine, where Carolyn was treated, says the treatment regimen that Carolyn received is another example of that progress. Based on the phase III clinical trial KEYNOTE-522, the U.S. Food and Drug Administration (FDA) approved the immunotherapy pembrolizumab (Keytruda) in combination with chemotherapy in July 2011 for early-stage triple-negative breast cancer. Under this regimen, pembrolizumab is given with carboplatin and paclitaxel, followed by doxorubicin or epirubicin and cyclophosphamide before surgery and then as a monotherapy after surgery. Carolyn, however, received an adapted version of this regimen in which both surgery and pembrolizumab were delayed until after she gave birth to avoid harming the baby.

“The fatigue was next level, and I was not sure if it was because I was pregnant or if it was from the chemo,” Carolyn said. “But the way to battle fatigue is basically to keep on moving and so that’s what I did.”

Carolyn continued to work full-time throughout her pregnancy and treatment, while also taking care of daughter (now 3)—with a lot of help from family and friends. After giving birth, she had a completion mastectomy to remove residual breast cancer tissue—which Emily explained can remain after risk-reducing mastectomies and even increase during pregnancy—and finished her chemotherapy. Tests showed she had a pathological complete response, which indicates no signs of cancer.

Even before Carolyn’s cancer diagnosis, each one of the sisters has been willing to contribute to continued progress in cancer screening, prevention, and treatment. Emily has participated in clinical trials evaluating preventive methods for both breast and ovarian cancers. Meanwhile, Carolyn and her younger sister, Julia Straube, are participating in biobank studies where they are donating their breast tissue and blood samples for future research.

“I want to opt into anything that will further research,” Julia said. “Because it is not just about our future and our longevity. I like to think about there being better options for my kids and other patients in the future with this mutation.”

Measuring the Impact of Progress

One of the goals of the annual AACR Cancer Progress Report is to illustrate how much progress is being made—and how research fuels that progress. Between 1991 and 2024, the overall cancer mortality rate declined by 35%, resulting in more than 4.8 million cancer deaths averted. During the congressional briefing for the report, AACR CEO Margaret Foti, PhD, MD (hc), said the true measure of progress is in those lives saved.

“Behind every discovery are patients, their families, their loved ones, who want to spend more time with each other,” Foti said. “Cancer touches every family, and my family has not been immune to that. My sister and brother both had cancer and they’re in great shape today because of research and I am very, very grateful.”

Carolyn and her sisters said that between discovering they all have a BRCA1 gene mutation and Carolyn’s cancer diagnosis, this is the most time they have spent together since they were kids living in their parents’ house.

“No one wants to bond over any of this, but we trust each other, we support each other, and it really has brought us so much closer together,” Carolyn said.

A similar sentiment was shared by each of the congressional representatives who made an appearance during the briefing.

Senator Shelley Moore Capito (R-WV) said her brother was diagnosed with cancer last year, and he is now in full remission. “I’m certain if this had happened 20-30 years ago … he’d still be struggling, but he has had great care. So, thank you to all of the researchers and others who have brought about not just the hope of treating [cancer] but cures.”

Representative James R. Walkinshaw (D-VA) is carrying on the legacy of his “predecessor, mentor, and best friend” Gerry Connolly who passed away from esophageal cancer. While getting treatment, Connolly wrote a bill that required the government to study esophageal cancer among federal employees and retirees to help identify opportunities for early detection. Later renamed the “Gerald E. Connolly Esophageal Cancer Awareness Act” in his honor, Walkinshaw said he had the great privilege of getting the bill across the finish line.

Although Ben Sasse, former Senator of Nebraska, could not be there in person, he sent a prerecorded video sharing how he was recovering from surgery. Normally, he said, surgery is not associated with positive news, but in this case, it is a testament to how far cancer treatment has come. In December, Sasse was diagnosed with pancreatic cancer and given three months to live. His doctors said he was post-surgical or, in Sasse’s words, “too toasted” for surgery. But he joined a clinical trial for the now FDA-approved daraxonrasib (Rasonque) and is still alive nine months later.

“We measure progress with data, exact measurements, refined hypotheses, careful tests, oceans of spreadsheets. But why do we do it?” Sasse said in his video. “We do it because my family and I got to have dinner together a couple days ago and many other families get to do that—to measure the progress of time with particular hugs, particular breakings of bread, more conversation, more life, more gratitude.”

Daraxonrasib is also an example of how “we are in a remarkable era of scientific discovery like never before,” AACR President Keith T. Flaherty, MD, FAACR, said during the briefing. In fact, he explained that it wasn’t long ago that KRAS mutations—which daraxonrasib targets—were considered undruggable, and now we have a new treatment for one of the deadliest cancers.

Cutting-edge innovations like this are why Capito, who currently serves as the chairperson on the Labor, Health and Human Services, Education, and Related Agencies Appropriations Committee, assured those in attendance that the Senate remains “deeply committed to NIH research funding.”

Continuing to Fuel American Medical Innovation

Senator Sasse, daraxonrasib’s approval, and the impact of cancer on families were also popular topics of discussion among many others at the Capitol. At a participants’ reception held the night before the Rally For Medical Research, Reed Jobs, whose father died from pancreatic cancer, pondered about the promise of this breakthrough with daraxonrasib and what other innovations could be around the corner.

“This is giving hope to millions of families all over the world,” Jobs said, who founded the venture capital firm Yosemite to fund cancer research. “American innovation has an incredible, proud, and ongoing history. This is where cancer is going to be made nonlethal. I truly believe that. And I think that that’s going to happen in the course of most of our lifetimes.”

NIH Director Jay Bhattacharya, MD, PhD, reminded people at the reception that while daraxonrasib’s approval only recently made splashy news, the research behind it started decades ago with the discovery of the KRAS gene through NIH research. Recently, Bhattacharya said he has gained an even greater appreciation for such basic science discoveries after his mom passed away from congestive heart failure earlier this year. He explained his mother would have died at a much younger age if she had been diagnosed 20 years ago, before research led to new treatments for this disease.

“The real advances that have given hope to families everywhere, it’s so easy to take them for granted, but we must never do that,” Bhattacharya said. “They result because of sustained work by people who devote their lives to it. And at the NIH, we are absolutely committed to making sure that we train the next generation of scientists, make sure their ideas are supported, that we focus on things that unite all of us.”

Like Capito, Senator Dick Durbin (D-IL) ensured Rally participants that members of Congress would reject any administration effort to cut the budget for NIH on a bipartisan basis.

Rally Participants Tell Their Representatives What Science Makes Possible

Since 2013, hundreds of people have attended the Rally for Medical Research Hill Day each year to advocate for robust and sustained funding for NIH. While AACR serves as the founding organizer and lead sponsor, more than 400 organizations across every area of medical research unite to spread this message. This year, one of the key messages was an ask to increase the NIH base budget in fiscal year 2027 of at least $51.3 billion.

To deliver this message, Carolyn’s family joined a group of about 20 other Pennsylvania constituents, which included AACR President-Elect and Director of Penn Medicine’s Abramson Cancer Center Robert H. Vonderheide, MD, DPhil, FAACR, and Bloomberg Distinguished Professor of Cancer Biology at Johns Hopkins Bloomberg School of Public Health Ashani T. Weeraratna, PhD, who is a member of the AACR Board of Directors.

Over the course of the day, they met with various representatives across both parties, which included but was not limited to Senator Dave McCormick (R-PA), Representative Brian Fitzpatrick (R-PA), and staff members for Senator John Fetterman (D-PA) and Representative Mary Gay Scanlon (D-PA). Each of them expressed their continued support for NIH funding.

During the meetings, the Rally participants were also able to voice their concerns to the representatives.

Weeraratna said that her institution used to accept between 10 and 15 PhD students each year in her department, but in the last two years, they have only accepted three because of the delays in funding. Further, she said the United States is starting to experience a “brain drain” of talent to other countries.

“Young researchers always used to ask me about coming to the United States to continue their studies, but recently that has not been the case,” she said. “In order to ensure we continue to deliver the best care to patients in the U.S., we need to also ensure we are continuing to nurture a pipeline of early-career researchers.”

During one of the meetings, Vonderheide emphasized how big an impact NIH funding continues to have on cancer research.

“We want to cure cancer,” he said. “Not just make it a little better—cure it. We think science can make that possible—with support.”

Science is what made it possible for Carolyn to celebrate her 37th birthday the day following the Rally; to hold her healthy baby boy, who continues to show no effects from the cancer treatment his mother received; to get to go on hayrides with her children later this fall and train rides around Christmas time; to get to celebrate Blake’s first birthday; to spend more time with her sisters; and to continue to advocate for medical research.

To get to live her life—the true measure of progress.