East Marion husband and wife both struck with breast cancer

Terry and John Gorga, who have been married for more than 30 years, share two daughters, two dogs, a love of the outdoors and a zest for life.

For the past two years, though, the East Marion couple also have shared something else: a diagnosis of breast cancer.

“I couldn’t believe it. I was blown away,” said John, 62. He had just recovered from breast cancer surgery and treatment earlier this year, then Terry, 57, was diagnosed.

They both had cancer in their left breast.

“What are the odds — two people in the same house, on the same side?” he said.

The American Cancer Society said a man’s lifetime risk of getting breast cancer is 1 in 833, while a woman’s is 1 in 8.

A husband and wife diagnosis, while not unprecedented, also appears to be extremely rare.

“I've been practicing breast oncology for 15 years,” said Dr. Arif Kamal, chief patient officer for the American Cancer Society. “I've never heard of that.”

The Gorgas said they want to share their story to spread awareness that breast cancer can impact both women and men.

“Maybe I can help somebody else,” John said. “Men don’t like going to doctors, but you’ve gotta go.”

'A little piece of paradise,' then 'the death talk'

Terry and John met on the East End of Long Island in the late 1980s. She grew up on a farm in Mattituck. He was a burly Local 30 stationary engineer from Queens.

As a child, he had fallen in love with the bucolic North Fork while spending summers and days off at a family house in East Marion.

They married in 1990 and settled in Manorville, where they raised their two daughters, Jacquie and Rachel.

About four years ago, they moved into an East Marion home that oversees a lake, is a short walk to the beach and not too far from her job as an office manager at Strong’s Water Club Marina in Mattituck.

“This is like a little piece of paradise,” John said.

The two were sitting poolside in 2020 when Terry noticed something strange on the left side of John’s chest. He felt a small lump under his nipple.

“It was bulging out and the nipple was inverted,” Terry recalled. She told her husband to get to the doctor and have it checked out immediately.

A mammogram and subsequent biopsy confirmed it was breast cancer.

“I wasn’t aware that men got breast cancer until I got it,” John said.

Terry said she and her daughters were in shock when they heard the news. “We had the death talk,” Terry admitted. “John is our rock.”

They both credited Dr. Susan Lee, chief of breast surgery at Northwell Health Peconic Bay Medical Center, and the staff at the Northwell Health Cancer Institute in Riverhead with easing their stress and anxiety.

Lee explained John’s condition in depth and his treatment options to the couple, including drawing pictures to explain the procedures.

“She made this whole crappy experience a whole lot better,” John said.

He was diagnosed with invasive ductal carcinoma, the most common form of breast cancer among men, Lee said. The cancer starts in the ducts of the breast, and in John’s case spread to the lymph nodes.

In December 2020, he underwent a mastectomy and axillary lymph node dissection to remove the tumor and 10 lymph nodes. Three were positive for cancer.

He was home in time for Christmas.

“Fortunately, the mortality rate for breast cancer is decreasing dramatically,” Lee said, “in large part due to breast cancer being found earlier due to screening. And the earlier the stage, the better the chance for cure and survival.”

After he healed from the surgery, John underwent 26 radiation treatments and remains on medicine to block the estrogen and progesterone that feed the cancer. He undergoes regular screenings to make sure the cancer hasn’t returned, and is back into his regular exercise routine.

“Exercise keeps my head focused and keeps me motivated,” John said.

'It was scary for me'

Earlier this year, Terry went for her annual mammogram screening. She wasn’t overly concerned, even after she was told there was something suspicious on the mammogram.

“I always had dense breasts, so I have had mammograms and sonograms,” she said. “I had a biopsy once before and it ended up being nothing.”

This time, it came back as cancer.

“It was estrogen-fed, the same cancer and the same side as John,” she said. “But it wasn’t as scary.”

“It was scary for me,” John interjected. “And I was worried about our kids.”

The couple underwent testing to determine if they had genetic mutations, including the BRCA gene, which could predispose them — and their children — to breast cancer. They both tested negative.

Terry also was found to have invasive ductal carcinoma in her left breast. Unlike John, the cancer had not spread to her lymph nodes.

“This is the first time I have ever treated a couple,” said Lee, adding she was “unpleasantly surprised” when she found out Terry had breast cancer as well. “But they are both really fantastic and always really positive.”

After reviewing her treatment options with Lee, Terry chose to have a lumpectomy with oncoplastic breast surgery, which allowed removal of the cancerous tissue and adequate margins around it. At the same time, she had reconstructive surgery.

After healing from surgery, Terry underwent 13 weeks of radiation therapy.

She is also on longtime medication to block production of estrogen, but is struggling with some side effects, such as joint pain.

“Radiation doesn’t hurt, it just messes with you,” she said. “I’m laying there thinking I have cancer, but I wasn’t sick and I didn’t feel bad.”

She named the radiation machine that loomed over her while she was on a table “Priscilla — the cancer killer.”

Worried about exposures 

Terry and John said they aren’t sure if some kind of environmental exposure led to their cancer diagnosis.

John’s job as a stationary engineer for decades involves working with equipment such as high-pressure boilers, chilling machines and incinerators, as well as locations with asbestos.

“I was on a farm and helicopters would spray the fields with pesticides," Terry said. “We were kids playing in the mud. You didn’t know. It’s crazy. In my head, I always thought something was going to happen to me.”

They also wonder whether the well water that served their Manorville home was contaminated. The Gorgas said they drank bottled water, but their home eventually was connected to the public water system in Suffolk County for free.

Yet connecting a cancer diagnosis with an environmental exposure such as groundwater contamination or pesticides can be difficult, experts said.

“Even though it’s rare, I wouldn’t jump to conclusions about a common exposure,” Kamal said.

“Unfortunately, I think it was just bad luck and a coincidence,” Lee said.

Kamal said both men and women can be proactive by discussing their family history of cancer with their doctors. Sometimes that means having delicate conversations with relatives to find out more information about illnesses in the family.

“It’s not just that grandma had cancer. We really need to know what kind,” he said. “You should share that with your clinician so they can understand your risk.”

Terry and John said they want to share their experience with others, hoping it will spark them to seek cancer screening.

“It helps so much to talk to people,” Terry said. “It helps your head, and I think it helps people.”

John said he doesn’t hide his mastectomy scar, and feels comfortable going shirtless — even in the summer when he visits the beach.

“I’m kind of proud,” he said. “I’m here and I’m thankful … maybe I can help another guy.”

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.