Understanding the genetic link to prostate cancer helps James DeLong finetune treatment and protect his family

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. 

Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose.
James DeLong
James DeLong

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 Research 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." 

Antigen A foreign substance, such as bacteria, that causes the body’s immune system to respond by making antibodies. Antibodies defend the body against antigens. Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Genetic counselor A health care professional with special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. A health professional who has special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. They help patients find out their chances of having a genetic condition or of having a child or other family member with a genetic condition. They also help patients understand their options for genetic testing, including its risks and benefits. After genetic testing is done, genetic counselors help patients understand their test results, including how the results can affect other family members. They also provide counseling and support. Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk. Hereditary In medicine, this describes the passing of genetic information from parent to child through the genes in sperm and egg cells. Also called inherited. Hormone therapy Hormones can cause some cancers to grow. To slow or stop growth, synthetic hormones or other drugs can be used to block the body’s natural hormones, or surgery is used to remove a hormone-producing gland. Treatment that adds, blocks or removes hormones. For certain conditions (such as diabetes or menopause), hormones are given to adjust low hormone levels. Hormones can also cause certain cancers (such as prostate and breast cancer) to grow. To slow or stop the growth of cancer, synthetic hormones or other drugs can be used to block the body’s natural hormones, or surgery is used to remove the gland that makes a certain hormone. Also called endocrine therapy, hormonal therapy and hormone treatment. Melanoma Cancer that begins in the melanocytes (cells that make the pigment melanin). It may begin in a mole (skin melanoma), but it can also begin in other pigmented tissues, such as the eye or the intestines. Metastatic A metastatic cancer is a cancer that has spread to other areas of the body by way of the lymph system or bloodstream. Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant. Screening Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease. Examples of cancer screening tests are the mammogram (for breast cancer), colonoscopy (for colon cancer) and Pap and HPV tests (for cervical cancer). Screening can also include a genetic test to check for a person’s risk of developing an inherited disease.
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