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Hackensack Meridian Health John Theurer Cancer Center at Hackensack University Medical Center Holds Every Year a Survivors Celebration at MetLife Stadium
Anne-Marie Caruso, North Jersey

Chiara D & # 39; Agostino, resident of Montclair and breast cancer activist(Photo courtesy of Kelly Clark)

As this is Breast Cancer Awareness Month, October is of special significance to all people living with or affected by this disease. But for the resident of Montclair Chiara D'Agostino, this time of year has a special resonance: it was four years ago, in October, that she began to feel a hard lump against the chest wall under her bosom left. On the eve of her 43 years, she dressed to go out and celebrate with her boyfriend of the time; just two months earlier, she was returning from a trip to Italy and undergoing a routine mammogram that revealed nothing.

"My first thought was" Why me? ", She says. "But my second thought was," Why not me? Why should I be special and not have cancer? "

Prior to his discovery, D'Agostino had taught at high school in New Jersey and had a master's degree in Italian culture from Middlebury College. She loved to travel. Since then, she has spent much of her time navigating a confused landscape of medical options and insurance barriers, blogging about her victories and failures at home. beautythroughthebeast.com, and advocacy for women diagnosed with the disease. She shared her experiences with Senator Cory Booker and delivered a speech at a conference entitled "The Affordable Care Act saved my life". She tells her story and describes what she has learned on the long road to well-being, with Montclair Magazine.

More: Overcoming Breast Cancer: 4 Survival Stories

More: 2018 Triple Breast Cancer Foundation Peace, Love and Remedy

Difficult diagnosis

D'Agostino was between jobs when she discovered a ball in her chest on a Friday night, but she had started receiving coverage through the state-funded New Jersey Family Care program. On Monday morning, she called her health insurer and found an oncologist at Mountainside Hospital who ordered a new mammogram. But since she had dense breast tissue, he did not get cancer either. Dr. Jan Huston (who was hit and killed by a vehicle near his home in Essex Fells last year) gave him an ultrasound that measured the 3-centimeter mass. A biopsy revealed that, despite an annual mammogram and no family history of breast cancer, she had stage 3 triple negative breast cancer, a variant notoriously difficult to treat.

Invisible tumor, but problems of implants

This was good news: Preoperative chemotherapy had shrunk D'Agostino's tumor to the point where it was no longer visible. "I wanted a double mastectomy for my breasts to match, but the St. Barnabas surgeon said that the unaffected breast takes longer to heal for some reason, and we should do them one at a time," says -she. In April 2015, only one mastectomy and one stent were inserted to gradually give way to the implant. In December, she underwent the same procedures for the right breast. Two months later, an "exchange" operation replaced the stents with implants.

She was now considered "cancer free," but in the next 18 months she would suffer from repeated implant infections requiring surgery. "The stitches would start to open and they should either stitch them up, or replace one or both of the implants," she says. In August 2016, she was sitting on the beach at Cape May when she found that the skin of her left breast was gray. She went directly to the St. Barnabas Hospital emergency room in Livingston.

"Three months ago, I had stopped taking my anti-anxiety meds, but now I was panicking," she says. "I was so scared that the cancer was coming back." A CT scanner showed nodules in his lungs and a biopsy of his sternum revealed that triple negative breast cancer cells were also spread in his bones. . Her doctors at St. Barnabas told her that in order to be able to treat her stage 4 breast cancer she had to participate in a clinical trial, and suggested she go to the Rutgers Cancer Institute in New York. Jersey (CINJ), designated by the National Cancer Institute. research center in New Brunswick. "I was in shock," she says. "Now I was alone."

The world of clinical trials

D'Agostino spoke with doctors in hospitals in New Jersey and New York and discovered that an ongoing immunotherapy trial at CINJ offered him the best hope. "There is no guarantee with immunotherapy [which harnesses the body’s immune system to attack cancer cells]but there are no guarantees with regular chemotherapy either, "she recalls when she thought about it at the time. And there was another development: his seventh infection related to his breast implants. This time, she told her new CINJ surgeon that she wanted to have an "explant" and "go flat. He said it was a good idea, given my story, "she says. "He also stated that if I had been under his care, he would have removed the implant and would have given me months to heal it before putting it back."

At CINJ, D'Agostino received infusions of the Keytruda immunotherapy drug every three weeks for eight months. "I had nausea – even though nothing was comparable to chemotherapy – a little rash and fatigue, and I did not lose my hair," she says. Once again, his cancer was reduced to the point where he could no longer be seen on CT and CT scans. "I never realized how much tension I had until I started a new treatment and got good news," she says. "Then I could lower my guard, exhale and sleep for a week. That's where I realized how exhausting the process was.

Chiara D & Agostino attended a conference of the Directors Forum of the American Cancer Association / Cancer Center in 2017. (Photo: Courtesy of Chiara D & # 39; Agostino)

But six weeks later, her cancer started to grow again and she had to leave the trial with no choice but to find a new one. Using genomic test results to determine the type of tumor mutation that she had had, she sought expert advice from Memorial Sloan Kettering in New York City and to online resources such as SmartBridge Health, Driver.xyz and Share Cancer Support have found another clinical trial underway at CINJ. He has been asked to do weekly chemotherapy infusions and to take a drug that is tested for the ability to prevent cancer cells from repairing themselves.

Once again, the combo was effective for about eight months, then the markers of cancer in his blood started to rise. A PET scan and a brain MRI showed two tumors in his brain and enlarged lymph nodes in his abdomen. "It's like a mole game," she says. "But it's metastatic breast cancer, and there is no cure for it."

Facing the surgery

D'Agostino started looking for a neuro-oncologist. On July 31, she underwent a gamma knife operation at CINJ, during which precision radiation was directed to her brain tumors. Her treatment options widened when, after two and a half years of living with Medicaid with a disability, she was allowed to switch to Medicare and was able to see doctors outside of New Jersey.

Today, she sees Dr. Kevin Kalinsky, a medical oncologist at the New York Presbyterian Hospital / Columbia University Medical Center, who uses tumor genomics to research new treatments. breast cancer on behalf of the National Cancer Institute. He is looking for a drug trial that treats one of his mutations in breast cancer and has prescribed a drug called Xeloda, which it takes a week, a week leave. By mid-September, its tumor markers were down.

"I'm going to stay indefinitely until I can not bear it anymore or the tumors begin to grow," she says. "Or I want to participate in another test." Reflecting on how she continues to succeed, she sets the example for her resilient parents and the experiences of others she has met in support groups. "And," she adds, "I am a Scorpio from southern Italy and a girl from Jersey. Maybe it has something to do with it?

The advice of D'Agostino to be a good self-representative

Connect during conferences. "I recommend Living Beyond Breast Cancer, which is hosting conferences in Philadelphia," she says. "They help you find clinical trials and put you in touch with other organizations."

Cultivate the community. "It's because of that that I finally made very close friends who loved me unconditionally and that's the best gift. The Summit Renaissance Church allowed me to continue. Some of their members have worn me when I have lost hope and the will to live. Moreover, being with children allows me to continue. I love the innocence of little people and I spend time with them every Sunday when I volunteer at the church nursery. "

Do not hesitate to ask for antidepressant and anti-anxiety prescriptions psychiatrist, as well as individual therapy sessions to treat post-traumatic stress disorder.

Do not go to appointments yourself. "I recommend having your own notebook, a pen and a second notebook that you give to the person who is driving you, so that person can take notes," she says. "So you keep this notebook. When you are at the doctor, things go over your head and you do not remember to write them. "

Keep copies of everything. "Especially if you go to see many doctors and places, keep all your medical records," advises D'Agostino. "Write down the dates when you did things. You think "I will not need to know that", but you do not know it. I have all the results of the disc, the scan and the blood. It makes it a lot easier. "

Keep your doctors informed. "Get a fax machine and pay $ 10 a month to get a fax number," she says. "Then scan and fax your results."

IIf you know that you are going to see other doctors, develop relationships with them. "So, if you need a second opinion or want to change it, they will already have your records," says D'Agostino. "Otherwise, it takes about a month to be on their books."

Clinical tests

Dr. Kevin Kalinsky, an oncologist with D'Agostino, is conducting clinical trials on potential breast cancer treatments for the National Cancer Institute. "Triple-negative breast cancer is a cancer for which there is an unmet need," he says. "Some interesting studies about to be reported will lead to new indications for drugs other than chemotherapy."

For example, he says, immunotherapy has been approved for other cancers, including melanoma and lung cancer, but not for breast cancer; a test will determine if this can change. Another interesting product is a smart drug that delivers high doses of chemotherapy directly to cancer cells. "This antibody, conjugated to a drug, has reached a critical stage and we hope that it will be approved in a few months," he said. "It's a paradigm shift."

Help in researching clinical trials

Clinicaltrials.gov: A database of clinical studies funded by private and public funds around the world

Driver.xyz: A platform that connects cancer patients to treatments and research around the world

SmartBridge Health: ($ 399) A highly qualified oncologist will study the clinical trials that are best for you and provide you with a summary of treatment options.

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