As a lifelong educator, James DeLong believes in the power of research. So when he turned 50, he decided to sign up for a prostate cancer research study enrolling healthy men. The study involved an initial rectal exam plus an annual blood draw and questionnaire.
DeLong, who served as director of one of the University of Washington’s Master of Social Work programs for nearly 25 years, went in for his first prostate exam shortly after his fiftieth birthday in 2000. A year later, after returning for his annual study visit, DeLong, now 70, was told that his PSA level—which measures the amount of prostate-specific antigen (PSA) in a person’s blood—was elevated. A rise in PSA can indicate cancer, and a biopsy confirmed that was the case for DeLong.
He sought treatment at Seattle Cancer Care Alliance (SCCA) under the care of Dr. Celestia Higano, who spent decades at SCCA. “I wouldn’t be alive without her,” DeLong says.
Some years ago, Dr. Higano told DeLong about her colleague, Dr. Heather Cheng, an oncologist who specializes in genetics. Dr. Cheng was running a study offering free genetic testing for people with prostate cancer that has spread to other parts of the body. The study is designed to detect inherited genetic mutations that might be implicated in a person’s prostate cancer diagnosis. As part of the GENTleMEN study (Genetic Testing for Men With Metastatic Prostate Cancer), DeLong, who has stage 4 cancer, received a kit containing a saliva swab that he used to collect a DNA sample. (A related study, PROMISE, offers genetic testing to anyone who has been diagnosed with prostate cancer, regardless of whether it has spread.)
DeLong sent in the sample for analysis, which revealed that he carried an inherited BRCA2 mutation. BRCA2 is most commonly known as a gene that increases risk for breast cancer, and DeLong started putting together the puzzle pieces. His mother had been diagnosed with breast cancer in her early fifties, and his father’s sister died of breast cancer after being diagnosed in her late forties. But breast cancer is not the only elevated cancer risk associated with BRCA2; the likelihood of developing prostate cancer, as well as melanoma (a kind of skin cancer) and pancreatic cancer, is also greater in those with this genetic change.
To help DeLong process the information, in 2018 he met with Dr. Cheng and a genetic counselor at SCCA, who urged him to contact his family members and let them know the news.
The week of Sept. 26-Oct. 2 is National Hereditary Cancer Week, an opportunity to raise awareness about hereditary cancers including prostate, breast, ovarian, colorectal, endometrial, melanoma and pancreatic cancers. Most people who carry a genetic mutation that increases their chance of developing cancer are unaware of their risk.
But being aware can aid with treatment. In DeLong’s case, Dr. Cheng laid out an array of current treatments, including PARP inhibitors, and a number of clinical trials that could be helpful for men with a BRCA2 mutation who also have metastatic prostate cancer.
“It was an incredibly hopeful meeting for me,” says DeLong, who is currently on hormone therapy to block production of testosterone, a male hormone that fuels prostate cancer.
Because DeLong knows he has a BRCA2 mutation, he can take advantage of treatment options that are available for people with this mutation, as well as research and clinical trials involving innovative drugs that are not yet approved by the FDA. “Prostate cancer is the most heritable of all the cancers,” says Dr. Cheng, "but people really haven’t been thinking this attentively about the role that genetics plays until the last five or six years."
That began to change in 2015, when scientists at Fred Hutchinson Cancer Center and the University of Washington—led by Drs. Colin Pritchard and Pete Nelson—published a paper in the New England Journal of Medicine showing that metastatic prostate cancer has a higher genetic component than was previously known. More than 10 percent of patients with advanced prostate cancer have an inherited gene mutation. That study prompted SCCA and Dr. Cheng to launch the Prostate Cancer Genetics Clinic (PCGC) in 2016, where patients can access genetic testing and information specific to hereditary cancer.
Patients who might be especially interested in this clinic are those with a family history of prostate and other cancers such as breast, ovarian or pancreatic. But, says Dr. Cheng, “not everyone with a mutation has a family history of cancer.” Anyone can make an appointment at the PCGC clinic; it is not just for SCCA patients.
“The field is changing so quickly in a really exciting way,” says Dr. Cheng. “We can sequence a person’s genes to understand their risk of cancer and we can sequence the genes of their cancer, which can also have important treatment implications. There are an increasing number of treatments for people with mutations, especially those with advanced disease. But even if the genetic mutation does not change treatment, it may be important for family members to know about."
Knowing that he carries a BRCA2 mutation has prompted DeLong to periodically check his breast tissue for lumps; his family physician does the same at annual check-ups. He also informed his dermatologist, who has scheduled him for skin checks every six months. “I would not be doing these things if I didn’t have this genetic information,” he says.
DeLong’s BRCA2 status has also led to several family members getting tested. One of his two daughters is positive and is now receiving personal health care and planning for her long-term health at a hereditary cancer clinic in the Bay Area, where she lives. "Her care has changed dramatically,” says DeLong of his daughter, who is in her thirties. “She is getting cancer screening twice a year. That would not be happening otherwise at her age.”
Both his older brothers have also tested positive, including one who also has aggressive prostate cancer. Those brothers have in turn shared their genetic testing results with their own children, some of whom have also decided to get tested.
As a social worker, DeLong notes that he is comfortable dealing with the range of feelings that he has experienced as a result of knowing about his BRCA2 status. “I am pretty emotionally aware of things in my own life,” he says. “For me, knowledge is power."