At the age of 29, Amy Lynn Safaty had both of her breasts surgically removed. "When I woke up completely flat before I had reconstruction, I thought, ‘Oh my God, what did I do?’"
What she did was outsmart breast cancer, choosing to say goodbye to her breasts before she even had one cancer cell. Her younger sister Danielle did the same surgery months later at age 25.
Both women learned they’d inherited the Breast Cancer Gene 2 mutation, BRCA2, that gave them an 87% chance of developing the cancer in their lifetimes. "The BRCA gene is normally one that suppresses tumor growth and actually helps to prevent cancers from developing," says Amy Lynn, now 34, and a pharmacist and district lead for CVS. "But when you have that mutation, that’s when you actually have that increased risk of developing cancer."
Both sisters chose to have prophylactic double mastectomies, also referred to as preventative or risk reducing mastectomies. The decision to remove their breasts reduces their odds of getting breast cancer to about 5%, says Dr. Susan Palleschi, director of breast surgery at Northwell Health Glen Cove Hospital. Palleschi says she encourages her patients who are positive for the BRCA mutation to have mastectomies while they are healthy, instead of waiting until they have a cancer diagnosis.
Sisters Amy Lynn, left, and Danielle Safaty, of Hauppauge and Manorville respectively, wear chemotherapy caps to support their mother, Nancy, right, in her breast cancer journey. Credit: Amy Lynn Safaty
The surgery involves removing 95% or more of the breast tissue while potentially sparing the nipple, Palleschi says. Sometimes a plastic surgeon can be present for immediate breast reconstruction, she says. Other times, the reconstruction entails follow-up surgeries.
"It’s the best operation we can offer," says Dr. Tommaso Addona, a plastic surgeon who does breast reconstruction with New York Plastic Surgical Group in Garden City and Manhattan.
Here is the Safaty sisters’ story, and the stories of three other women who said "Take that!" to breast cancer by choosing the most aggressive prevention option available: removing their breasts.
‘COULD HAVE BEEN A HORROR STORY’
Frances Coloprisco, 64, of Levittown, says she believes she got breast cancer so she could save her daughter’s life. "That’s the way I look at it," she says. "Nobody checks 24-year-olds."
Twelve years ago, Coloprisco was diagnosed with breast cancer after a routine mammogram. She had genetic testing and learned she was positive for a BRCA gene mutation. Her daughter, Lauren, was 24 at the time and dating Anthony LoMonaco, who would become her future husband.
Frances Coloprisco says her cancer diagnosis saved the life of her daughter, Lauren LoMonaco. Credit: Steve Pfost
Lauren tested positive for the mutation as well and had a baseline sonogram, expecting she would be followed periodically. But that testing shocked the Coloprisco women — it showed that Lauren already had early cancer cells in one breast that, left unchecked, would have advanced into tumors.
"Never in a hundred years would I think she could possibly have anything going on," says Frances, who had a double mastectomy herself and continues to be monitored with follow-up appointments.
Lauren could have continued to be monitored every three months. But that constant anxiety was too much for her, waiting for the shoe to drop. "I’m the type that worries about things. I didn’t want to live my life like that," she says.
I didn’t want to have to live my life in fear of cancer.
Lauren LoMonaco, of Commack
So, she had a double mastectomy and breast reconstruction, a plan to stop cancer cells in their tracks. She’s now 36, living in Commack with Anthony and their two children, ages 4 months old and 3 years old, and working in no-fault insurance litigation. By age 40, she’ll likely have her ovaries removed to reduce a higher risk of ovarian cancer that comes with her gene mutation, she says. When her children get older, they can be tested for the BRCA gene mutation.
"By the time my daughter was 30 there could have been no saving her," Frances says. "It could have been a horror story. I was devastated she wanted to take her breasts off, but I understood."
‘A PIECE OF YOUR WOMANHOOD’
Jeni Sacklow’s mother had breast cancer a dozen years ago, but it wasn’t until her mother’s sister also got breast cancer that the family tested for genetic mutations. It turns out they had a mutation of a less common gene, PALB2, which stands for Partner and Localizer of BRCA2.
"Had my aunt not gotten genetic testing, we would never have gotten genetic testing," says Sacklow, 26, of Bethpage, who is in her fourth year of medical school at New York Institute of Technology College of Osteopathic Medicine in Old Westbury. She was tested through a saliva sample in 2023.
Jeni Sacklow, a medical student from Bethpage, had a prophylactic double mastectomy in January. Credit: Jeni Sacklow
Finding out she had a mutation was "a huge stomach-falls-to-the-floor kind of thing. You know your risk is really high and you’re staring it right in the face," she says.
In January, she had her prophylactic double mastectomy.
Having breasts removed is like giving up a piece of your womanhood, she says. "You feel like you mutilated yourself for a little bit," she says. In April, she had reconstructive surgery and has since gotten used to her implants, which initially felt like she had something foreign in her chest. "I had drains coming out of my sides to prevent fluid collection for about three weeks following surgery both times. I couldn't lift my arms above my head for about a month, so I had to depend on other people to wash my hair. I also couldn't lift more than five pounds for about 6 months." She's had some scar tissue buildup that's causing her pain, so she'll have an additional surgery to address that in January of 2025, she says.
Her decision has made dating a little more complex. "I’m single, and it’s really difficult to talk about. If things do get intimate, you have to explain these two giant scars on your chest," she says.
One doctor told her she might not want to have a mastectomy because she wouldn’t be able to breastfeed any future children as her surgery included removing her milk ducts. "You have to be alive to breastfeed your child," she says she pointed out. "If I die from breast cancer, breastfeeding is not really an option."
‘I WANT THEM GONE’
Tanya Crawford, now 56, was 52 at the time she was diagnosed with triple-negative breast cancer, an aggressive form of breast cancer. Credit: J. Conrad Williams Jr.
When Tanya Crawford, of Wyandanch, found a lump in her left breast, she didn’t think much of it, because she’d previously had a benign lump in her right breast. She didn’t even go for a mammogram until her annual appointment four months later.
While she was in the radiology department, the technician right away said they’d like to do an ultrasound as well, and then asked her to go into an office to wait for the radiologist. "I’m thinking, ‘They’re benign. Why all the hoopla?’" Then the radiologist came in, Crawford says, and "things sort of spiraled out of control."
Crawford, now 56, was 52 at the time she was diagnosed with triple-negative breast cancer, an aggressive form of breast cancer. She had a good response to chemotherapy and doctors told her she could have a lumpectomy in the breast with the cancerous tumor. A lumpectomy surgically removes the tumor while leaving most of the breast intact.
Tanya Crawford, of Wyandanch, had her double mastectomy in March 2021, one month after she rang the bell on her last day of chemotherapy. Credit: Tanya Crawford
"I chose to have the most radical prophylactic approach and remove both breasts," Crawford says. She says she told the doctors: "Get them off. I want them gone."
A retired nurse, Crawford now volunteers with the Adelphi NY Statewide Breast Cancer Hotline & Support Program to help other women.
"You need to consult whatever higher authority you believe in, speak with your family, get good advice from your doctors and make a decision that you will be happy about," Crawford says. "Any opportunity to increase my life and be here for my children and grandchildren, I’m very happy. I don’t miss my breasts."
‘BOOB VOYAGE’
Amy Lynn and Danielle Safaty inherited their BRCA gene mutation in a way that surprised them — through their father.
Their mother, Nancy, 58, a court clerk from Hauppauge, was the catalyst for them to be tested, however. Nancy found out she had breast cancer after noticing that something looked strange on her left breast while on a cruise with her husband, David. When they got home, she made an appointment with her doctor; he told her she had cancer.
Nancy, Danielle, David and Amy Lynn Safaty pose together in Nancy and David's Hauppauge home. Credit: Elizabeth Sagarin
Nancy tested negative for the BRCA mutation. Her cancer, she says she was told, was just "bad luck." But her husband’s family has a history of breast cancer, and so Amy Lynn and Danielle, then both in their 20s, decided they should be tested for the mutation anyway. Their father was tested as well.
It turned out Dad was the source. "I kind of feel guilty about that but it’s nothing I can control," he says. "I wouldn’t have even thought about getting checked. That was like an eye-opener."
Removing the breasts was not an easy decision, Amy Lynn says.
"I didn’t want to have surgery. I didn’t want to lose my boobs," says Amy Lynn. For two years, she underwent monitoring ultrasounds and MRIs every six months. But she was tired of that regimen; the "scan-xiety," worrying each time that the doctors might find something, and the expense. She joined social media groups for women in her situation, such as The Breasties, BRCA Strong and Previvors. Previvors is a group for women who don’t yet have cancer but know they have a gene that predisposes them to it.
She decided to have the preventative double mastectomy and breast reconstruction in January of 2020.
I had some friends who said, ‘You get a free boob job.’ It’s not a boob job. It’s an amputation.
- Amy Lynn Safaty, of Hauppauge
In all, the process entailed five surgeries, her most recent one in May.
Danielle, now 29 and a pediatric physician assistant for Northwell Health, describes a mastectomy in lay terms as akin to carving out the inside of a pumpkin, removing the breast tissue and leaving the skin. She followed her older sister’s lead, having a preventative double mastectomy in September of 2020, not wanting to ever go through what she watched her mother endure. "With cancer, most of the time comes chemo and radiation. Losing your hair, being completely bald, chronic fatigue, nausea, no appetite ... you just kind of take a hit to the soul a little bit. I personally never want to be in a similar situation," she says.
Amy Lynn Safaty, of Hauppauge, froze her eggs hoping to prevent the breast cancer gene mutation from passing to the next generation. Credit: Amy Lynn Safaty
Before she had her breasts removed, Danielle hosted a "Boob Voyage" party in her parents’ Hauppauge backyard, with T-shirts and themed cupcakes. "To try to take the seriousness out of the situation," David says.
The sisters went one step further than removing their breasts — they’ve each made a move to protect future generations of their family. Both are engaged to be married and plan to have children. "We wanted to stop it with us," Danielle says. So, they each have frozen their eggs, and they plan to eventually go through in vitro fertilization to fertilize and then test the embryos for their mutation. They’ll only transfer embryos that don’t have the gene mutation, effectively eliminating the error entirely from future generations of their family tree.
Beth Whitehouse writes about families, parenting and great things to do with the kids on Long Island. She’s been a Newsday editor and shared a 1997 Newsday staff Pulitzer Prize for coverage of the crash of TWA Flight 800.