Knowing When Something Isn't Quite Right
- Suzette D'Agostino was 37 years old when her cancer journey began. Nobody in her family had ever had cancer. But she knew something wasn't right.
- D’Agostino, 62, has been diagnosed with breast cancer twice and chronic lymphocytic leukemia, the most common type of leukemia that affects older adults. The average age of most patients at diagnosis is about 70 years old
- When the big things like cancer happen, she says the first thing anyone should do "is breathe." Take a minute. Process. Find a specialist and find a support group.
She was 37 years old. Nobody in her family had ever had cancer. But she knew something wasn't right. "I had a feeling," she says, recalling that 1997 day with vivid clarity. "I called my OB-gyn and said, 'You need to see me now.'"
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The First Diagnosis
As the radiologist administered her mammogram, D'Agostino recalls she immediately "knew it wasn't good." On Tuesday, she had a needle biopsy. The doctor said to her, "You strike me as the kind of gal who wants this out." And that doctor was right. She did want it out. Without even knowing the results of the biopsy, they scheduled the surgery for Friday. "I didn't have time to think about it." Turned out D'Agostino was right: It was stage 1 breast cancer. The protocol then, D'Agostino says, was four rounds of chemo and a month of radiation. "And they took out 18 lymph nodes." She went through it all, including losing her hair, and not too much later, she was fine.Doctors treating breast cancer look for markers on your particular cancer to help decide what course of treatment is best for you. That's because cancer cells may have what are called receptors that help identify the unique features of the cancer, said Dr. Elizabeth Comen, who serves as a medical advisor to SurvivorNet and she is a medical oncologist at Memorial Sloan Kettering Cancer Center.
The three main receptors are the estrogen receptor, the progesterone receptor, and the HER2 receptor. The estrogen and progesterone receptors go together because they are fueled by hormones. Think of the cancer cell as having little hands on the outside of the cell which grab hold of proteins that help it grow. These proteins are sometimes called "ligands."
If you've been diagnosed with early-stage breast cancer, there are a handful of treatment options for you to consider. SurvivorNet has many resources to explain what those options are, and when something like a lumpectomy or a mastectomy is necessary.
"Every year, I would get a mammogram like normal." And every year it was clear. She happily celebrated her 20th anniversary of being cancer free by dying her hair pink and getting a breast cancer ribbon tattoo on her arm.
D'Agostino, who is married and has two daughters, a grandson, and two "big fat English bulldogs" (who bark in the background vying for her attention as she talks), loves being fit.
After that anniversary in 2017, D'Agostino was working out. She and her daughter were regularly going to Zumba classes. And once a week, D'Agostino took a kick-boxing class. She also was getting in a "minimum," she says, of 10,000 steps of walking every day.
Screening Through Lockdown
And then came the COVID-19 pandemic lockdown. D'Agostino was still keeping up with her regular health screenings (unlike many people in the country who put them off). During a regular mammogram appointment in April 2020, D'Agostino was told her lymph nodes were enlarged.
She was surprised. "It never occurred to me that something was wrong."
The doctor suggested they wait two weeks and re-check the lymph nodes. Maybe her body was fighting some kind of infection. And she thought, "Ok, I'm cool with that." Two weeks later, they had not gotten any smaller. She had a biopsy on a Wednesday. The doctor said the results wouldn't be back until the next week; she should enjoy her weekend. On Friday, the all came in; the doctor said, "You have CLL."
Her response: "I'm like, it's cancer? I'm, like, WHAT?!" It was chronic lymphocytic leukemia.
D'Agostino should have been tired. Fatigue is one of the big indicators of CLL. She remembered that she had been taking a nap every now and then, but chalked up to the workouts she was doing. "I just thought, 'hey, you're getting old, you know?'" Other than that and very much un-like when she had breast cancer all those years ago, she had no feeling, no clue, that anything was wrong.
Her doctor didn't know much about CLL, so D'Agostino was left hanging on a Friday afternoon with what she worried was a "devastating diagnosis" and nowhere to turn.
She did the one thing she now urges everyone NOT to do. "I consulted Dr. Google," she says, with a slight laugh. "And Dr. Google has me dying in five years." She laid down on the couch and remembers the TV was on. "I'm in a fetal position and this is so silly there was a Facebook ad for Facebook groups for people who play obscure instruments the kazoo." She remembered the ad touting, "There's a group for everybody on Facebook."
She starting looking for Facebook groups devoted to CLL and found a couple. In one, people urged her to stop looking at "Dr. Google" and told her go to the Leukemia Society for trustworthy information, and to get a specialist. Her oncologist steered her to the Cleveland Clinic about 45 minutes away from her home for blood work.
The next morning her doctor called and told her she had Stage 4 CLL. "I hear Stage 4 and I know I'm dying," she remembers thinking at the time. "I've got to get my affairs in order. I've got to get a will…"
But first she got a bone marrow biopsy.
"It hurt like hell," she says. CLL was found in 95% of her bone marrow. Her doctor told her she had every right to be tired, with those numbers, but D'Agostino also learned that Stage 4 CLL did not mean she was dying; it meant time for treatment.
Dr. Nicole Lamanna, a leukemia specialist and associate professor at Columbia University Medical Center explains that CLL is a type of cancer that starts in bone marrow, the spongy tissue in the center of your bones where new blood cells are made. CLL affects the immature blood cells that give rise to white blood cells called lymphocytes, which help your body fight infections.
Scientists don't know exactly what causes CLL. A genetic change in white blood cells causes them to become abnormal and to divide faster than usual. These abnormal cells crowd out healthy cells. Eventually, so many of the cancer cells are produced that they start to spread to other organs.
Dr. Lamanna says the exact cause of CLL is hard to know.
There is no known way to prevent it, and you can't catch it from someone else. In addition to the fatigue, enlarged lymph nodes and anemia that D'Agostino exprienced, people will CLL may experience shortness of breath during normal physical activity, low-grade fevers, weight loss, night sweats and an enlarged spleen or liver.
D'Agostino's doctor told her she had three treatment options. One: chemo. But she had "such a horrible experience" with that during her breast cancer battle that she knew that wasn't the one she'd choose. Two: A pill she would have to take for the rest of her life. And three: a new clinical trial that includes taking three drugs Bendamustine, Rituximab, and Venetoclax for 16-17 months.
"I asked my doctor if I were her sister, a sister who she likes A LOT, which option she would choose." The doctor's answer, along with D'Agostino's own thinking of "I've got nothing to lose, and if this does work, imagine all the people I'm helping," solidified the pick.
Three months into treatment, and after taking only the first two drugs, her bone marrow CLL was down to 2%. She was "exhausted," she remembers, and was anemic. After a blood transfusion, she felt much better. "I started working out every morning. Then I would try to go for a walk in the evening. Now I work out for an hour in the morning, and walk 3 miles in the evening."
On April 16, 2021, she reached MRD (minimum residual disease) negative in her blood, and on Sept. 8, 2021, she reached MRD negative in her bone marrow, she says.
"I was like, yes!" she says, fist pumping in the air. "I'm still technically in the trial. But my numbers are perfect."
But, wait. We're not at the end of D'Agostino's cancer story just yet.
Unwelcome News
In February of 2022, she went in for a breast exam, and she heard the unwelcome and all-too-familiar words from her doctor: "You have a lump. You know the drill." Mammogram, ultra sound, biopsy. "It was kind of the same," says D'Agostino, her unflinching spirit dimming just a bit as she recalls the moment of being told it was breast cancer, stage 1. "Of course it is," she said.
And like the first time she had it, D'Agostino dealt with it on her terms, as it fit her schedule.
Her husband, Peter, had surprised her on her birthday, which is in November, with tickets for a trip to Italy and Greece in 2020. "Then Covid hit and CLL hit." That trip was off. In 2021, he did it again and bought new tickets for them to travel in April 2022. "And I get the cancer diagnosis," she says. But she was determined to go on that trip.
She told the surgeon she's going on the trip. "You can schedule the surgery for March so I have three weeks to recover or we’re going to have to wait until I come back," she told the surgeon. "And he said, 'No one has ever talked to me like that'."
On the day of surgery, she wore a tiara and told the medical team, "I need this to be your best surgery today."
After the lumpectomy, the surgeon told her, "Your spirit makes all the difference in the world. It really helps in the healing."
With clean margins from the surgery and minus only three lymph nodes this time around, D'Agostino and her husband headed for Europe. The one thing D'Agostino didn't know was whether she'd need to start chemo when she returned. She was waiting for her Oncotype test number to be calculated by a lab in California. While walking around Rome one day she got a call from her doctor with the news. "Suzette," said the doctor, "I've got your test back," and the call dropped. After a frantic 10 minutes of trying to reconnect, she heard the good news: no chemo necessary.
When she returned home, she had a month of radiation, which she just finished the second week in June.
Ask D'Agostino how she has found the strength to get through this decades-long, rollercoaster cancer ride, and you know before she answers that it's her attitude and outlook on life that have propelled her through the pain, the despair, the fear, the anger.
"I remember walking into my oncologist's office 25 years ago and he had a sign that said, 'Attitude is half the battle' and I thought, 'You know what? That's a really good motto to live by." She wants to surround herself with positivity.
"I just want to uplift," she says, noting that sometimes one of her daughters has a tendency to fall into negativity. "She'll call me on the phone and start to complain about something. I'll tell her if she does it one more time, I'm going to hang up. She'll say, 'Ok, ok.' But then she would start again and I would hang on her." A few more times and her daughter stopped.
"It's important whether you have cancer or not," says D'Agostino, who says she finds happiness wherever she can. Like with the chipmunks in her back yard. She likes to feed them peanuts. And she likes to pay attention to the colors of leaves on her daily walk. "A lot of people miss those little things, you know."
And when the big things like cancer happen, she says the first thing anyone should do "is breathe." Take a minute. Process. Find a specialist and find a support group. She has made some "amazing friends" through the CLL support group world, and met up with one of them in July in Florida. They sat by the pool, she says, describing the moment as "one of the most joyous days of my life." She also started her own Facebook Group called CLL Sisters to help support others going through the illness.
Now she's about to turn 62. "I have so many things in my life that I'm so grateful for my girls," she says, "and my grandson who is 13. I want to watch him graduate from high school and college and get married. It's the good things that you want, and I have to be happy about life."
Maybe her husband will surprise her with tickets in November for another trip. It has, she says, become something of a ritual.
"Cancer has taken so much from me, in time. I just cannot let that happen again. I want to experience new things, see new things."
What is her feeling right now about the word "cancer"?
"I say, 'Alright God, we're done. Let me be healthy now. I'm done." She adds, "If it comes again, I'm ready to fight. I've kicked its ass to three times. I'll do it again."
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