Posted with permission from Healthy Cells Magazine
Greater Peoria Metro Area, Illinois, 2017

What goal do two special daughters of Illinois have in common? They desire to find a cure for cancer in their lifetimes. When Peoria native Nancy Goodman Brinker promised her dying sister, Suzy Komen, that she would do her best to eradicate breast cancer, she founded the Susan G. Komen for the Cure in 1982.  For more than 30 years, she has valiantly worked to build her cause into an international movement against the disease. Brinker eventually survived breast cancer herself, and her tireless efforts have saved countless lives. Today, former Peorian Diane Redington is immersed in her quest to make a monumental difference in the lives of women battling cancer, as well. After all, Redington is fighting for her life — and the lives of the approximately 1,000 women annually diagnosed with a rare, aggressive, and terminal disease: Gynecological Carcinosarcoma (GCS), also referred to as MMMT. The fight is now Redington’s life’s work.

GCS/MMMT begins in the female reproductive tract and includes ovarian, uterine, or fallopian tubes as primary sites. A nurse practitioner who holds degrees from the University of Pittsburgh, Carnegie Mellon University and Duquesne University, Redington’s only symptom appeared to be an umbilical hernia — until the biopsy returned in April 2015 with the devastating diagnosis of stage IV GCS/ MMMT. Redington immediately researched her cancer prognosis on the Internet and found little information, help or hope. 

Believing she had six months to live, the Peoria High graduate sought medical opinions and options by visiting the country’s major cancer centers, speaking with the few experts in GCS/MMMT and with other women diagnosed with the deadly disease. The tenacious 63-year-old wife and mother decided to focus all her energy, knowledge and resources — along with her supportive husband Roy, son Matt, six siblings and friends — on finding a cure. 

“As I searched for information and resources to understand and manage this disease, I found very little that was helpful or hopeful,” Redington said. “Two years later, with treatment from Massachusetts General Hospital (MGH) that has stabilized my cancer, I have found much to be hopeful about and want to share this information with others. Each of us must advocate for her own care and find the best team. Our outcome is driven by the quality of the care team. In initiating research to treat and cure this rare gynecologic cancer, we may find the key to solving a variety of ovarian, uterine and fallopian tube cancers. We can’t stand still.”

Launching The GCS Project: A Place for Help and Hope

In 2016, Redington founded The GCS Project (gcsproject.org) at Mass General after garnering expert medical support from a dedicated, multidisciplinary team there including Dr. Michael Birrer, director of the Gynecologic Cancer Program at MGH and professor of medicine at Harvard Medical School who leads the Gynecologic Cancer Program at Dana Farber Harvard Cancer Center, gynecologist oncologist Dr. Marcela del Carmen, and gynecologist surgeon Dr. Whitfield Growdon. Redington personally interviewed these three specialists for The GCS Project website, and their videos continue to provide informative and insightful support.

The GCS Project is a ground-roots, web-based educational resource to give help and hope to others while funding research where it was desperately lacking. Charged with the lofty goal of raising $300,000 to initiate research, The GCS Project raised more than $285,000 within months. The GCS Project recently received a generous gift of more than $40,000 from a Nashville fundraiser and memorials honoring country singer/songwriter, Holly Dunn, who died eight months after her GCS/MMMT diagnosis. 

The website offers a platform for Redington to share her journey with cancer,  clearly explaining the disease with the realistic compassion of a survivor. “The GCS Project is a privately funded website, and the work is done by volunteers committed to finding a cure for this rotten cancer,’ Redington said. “Any donation made to Mass General is directed to a fund restricted for this specific GCS research. Not a penny of your donation goes to anything but research. The researchers are making progress, and we need to continue to give them financial support to find a cure.” 

According to Birrer, no research specifically targeted GCS/MMMT until Redington launched her project. For the first time, the Massachusetts General Cancer Center is focusing on finding a cure, and toward these results, Birrer has performed DNA and RNA sequencing on Redington’s tumor and approximately 60 other tumors. Birrer noted that within months his research team has had some initial results.

“There are many ways in which normal tissue becomes cancer,” Birrer explained. “The simplest way to understand it is if a gene gets mutated, it then hyper-functions, and normal tissue becomes cancer. Diane’s cancer is so rare that we are unable to determine its origin. What we do understand is that the return rate of this cancer is high. The GCS Project research team is doing what we call a molecular ‘deep dive,’ a highly sophisticated analysis on a fairly large set of tumors. We already have been able to characterize some of the mutational events that occur in carcinosarcomas coming from the ovary or from the uterus, and they are not necessarily the same.”

Birrer also noted that some of these mutations are going to be “targetable.” They may be molecular mutations that are treatable. “We have early data suggesting that the way the DNA in these tumors is packaged or wrapped in a series of proteins called chromatins is abnormal,” he said. “This is important because a new set of chromatin remodeling drugs is coming into the clinic and may be relevant in the treatment of this disease. This tumor, in many ways, is a tumor of chromatin remodeling.” 

While acknowledging that research timing is unpredictable, Birrer suggested that translating some of these findings into the design of clinical trials may soon be possible, adding, “We are positioned so well for trials here at Mass General, and the team is motivated to conduct them. Since it is now well-recognized that it is a unique disease, we may see a carcinosarcoma-specific trial this year. The GCS Project research will be far out front of anything being done worldwide.”

Meet the Brilliant Research Team

Research underway in Birrer’s laboratory at MGH involves his team of eight postdoctoral MDs and PhDs conducting molecular analysis and assisting with the challenging  procedures involved with obtaining tissue from patients in the clinic. Tissue removal must be done ethically with Institutional Review Board (IRB) approval in a safe and comfortable environment for the patients.

Outside of the Birrer Lab, the team also includes neuro-oncologist Dr. Priscilla Brastianos, who assists in the sequencing of the tumors. Brastianos has a collaborative arrangement with the Broad Institute in Cambridge, Massachusetts, one of the top sequencing institutes in the world. In addition, several GYN pathologists are helping identify the cases, dissect them, and obtain the nucleic acids for analysis. One of Birrer’s high-level advisors includes scientist Brad Bernstein, an expert in methylation and chromatin structure of tumors.

“Of course, this patient population is a highly motivated, wonderful group of women who are dedicated to providing the appropriate tissues for research,” Birrer said. “In order to be successful in the analysis of tumor lines, we need to reach way beyond our lab.”

 

Visit The GCS Project website at gcsproject.org and “like” The GCS Project on Facebook.

Karen Crowley Metzinger

The GCS Project