by Susan Feinberg
People are often surprised when I say I feel lucky. About one in 500 Americans inherit a BRCA gene mutation, which greatly increases a person’s chances of developing breast and ovarian cancer – and I’m one of them. I made the discovery shortly after turning 50, when I was diagnosed with breast cancer, followed by fallopian tube cancer.
A decade later, I am now battling primary peritoneal cancer, despite having a preventative bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes) and a hysterectomy. A close relative of ovarian cancer, primary peritoneal cancer occurs in the lining of the abdominal organs and affects about 6 in 1 million people. The five-year survival rate has historically been lower than 50 percent.
Despite all this, I feel lucky because I was diagnosed in 2019. Thanks to recent discoveries made possible through clinical trials research, I was eligible to follow my initial treatment of six rounds of intravenous chemotherapy with a targeted oral maintenance therapy. This involves taking four pills a day and boosts my odds of beating cancer by 70 percent. The breakthrough treatment that greatly improves my prognosis – and the prognosis of countless others fighting hereditary cancer – is called a PARP inhibitor.
The way these new drugs work is complex, but the short story goes something like this: Poly (ADP-ribose) polymerase (PARP) is a family of proteins that helps cells repair their DNA. In 2005, scientists discovered that cells affected by a BRCA mutation were up to 1,000 times more sensitive to PARP. By that logic, researchers hypothesized that blocking PARP production could stop the growth of BRCA-related cancer by preventing tumor cells from repairing and replicating themselves.
To test their theory, they needed patients with diagnoses like mine to volunteer for clinical trials. Between 2012 and 2018, more than 2,000 women with BRCA-related ovarian cancer signed up to blindly receive a PARP inhibitor or a placebo. Thanks to those patients, a number of oral drugs have been approved for the treatment and maintenance of BRCA-related ovarian cancer, including primary peritoneal cancers like mine.
Further research has led to the approval of PARP inhibitors to treat other types of BRCA-related cancer, including breast, pancreatic and metastatic prostate cancer. Through clinical trials research, some 800,000 Americans with a BRCA mutation now have a powerful tool to fight cancer that didn’t exist five years ago.
Advocating for Cancer Research
If you doubt the ability of clinical trials to save lives, consider this: Every cancer treatment on the market was approved through a clinical trial. And, as the world races for a cure for COVID-19, we have all become aware of the importance of accelerating research.
While I have never participated in a trial myself, the patients who have are responsible for saving my life and the lives of countless others. To do my part, I volunteer and advocate for hereditary cancer research through Facing Our Risk of Cancer Empowered (FORCE). The organization promotes hereditary cancer research and supports those with inherited gene mutations, including BRCA and Lynch syndrome. In that role, I have spoken to ovarian cancer advocates about the benefits of PARP inhibitors and offered support to fellow patients combatting hereditary cancer. I also advocate for state laws that protect citizens against genetic discrimination.
Clinical Trials during the COVID-19 Pandemic
As of Friday May 15th, COVID-19 has killed more than 83,000 people in the United States. But that number only tells part of the story.
This spring, thousands of patients learned that the clinical trials they were hoping to participate in had suspended enrollment. An analysis by NPR found that more than 100 clinical trials for cancer treatments have been affected since March 1 due to the pandemic. Many patients who were seeking enrollment have stage IV cancer and hoped a clinical trial would work where traditional therapies have failed. For someone with advanced cancer, a three-month delay in treatment could mean the difference between life and death.
The country’s healthcare protocols are changing almost daily, as hospital systems and public health experts race to keep up with the evolving pandemic. In an effort to protect patients and healthcare workers, some providers have opted to change treatments, delay surgeries and postpone screenings out of an abundance of caution. While many of these decisions were unavoidable, they have put new burdens on patients.
Suspending trial enrollment has not only diminished hope for those currently battling advanced cancer, but the effects will delay therapies in the long-term as well. I am especially aware of how time-sensitive clinical trials can be, because I am one of the lucky ones. I am currently taking a life-saving drug that was approved for my condition shortly before I was diagnosed with cancer.
At this moment, the clock is ticking for thousands of Americans fighting cancer, as well as those yet to be diagnosed. As someone in a high-risk group due to my cancer treatments, I understand the importance of protecting people from COVID-19. However, while we work to save lives, we must ensure we aren’t threatening the lives of cancer patients in the process.
If you or someone you know is looking to enroll in a clinical trial, some trials are still open to enrollment during the pandemic. Many others are working on changing their enrollment processes to limit possible coronavirus exposure and may be opening soon. For the latest information, patients should contact their respective clinical trial site. For help finding a study, contact the National Cancer Institute at 1-800-4CANCER.
Susan Feinberg is a three-time cancer survivor, research advocate and FORCE volunteer. She lives in Cape Cod, Massachusetts.Tags: Clinical Trials Awareness Day, COVID19, FORCE, hereditary cancer, research