Stories of Survival

Breast cancer doesn’t discriminate by age or gender, class or race. Six county residents recount their personal experiences.

The Complicated Recovery

Caroline Walsh was 42 and it was only her third time having a mammogram. It wasn’t a good one. “I know that there has been a lot in the press lately about pushing the initial screening to the age of fifty, but I’m living proof that screening should remain at forty,” the Mount Vernon resident says. “I was diagnosed with a non-invasive form of breast cancer, and, in a matter of weeks, I’d gone from ‘perfectly healthy’ to planning a double mastectomy.”

She got the bad news while at work, where she is a vice president at a Manhattan-based advertising firm. “I was in a meeting when the call came in. When I heard the word ‘cancer,’ all the rest of the conversation was just noise.”

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The cancer was detected in only one breast, but her husband was the first to bring up the idea of a double mastectomy as a preventive measure against a recurrence in the other. “He told me that he fell in love with me, not my breasts, and that he wanted me to be around for the next forty years.” She had the double mastectomy last spring and woke up with brand-new perky breasts.

But complications soon developed. Instead of healing, skin near the incision site developed necrosis—the cells were dying. When the doctors removed the dead skin, there wasn’t enough healthy tissue left to cover the implants. They were removed and replaced with expanders. Saline was injected into these balloon-like devices until the skin had stretched enough. In August, the expanders were replaced with silicone implants. Walsh is today considered to be virtually 100-percent cured.

“My first question after surgery was, ‘How soon can I swing a golf club?’” she recalls. “They said two weeks, and I was at the club, first putting, then chipping. After about an hour, the club pro came out and asked, ‘Does your doctor know you are hitting balls?’ When I said yes, he asked, ‘Does he know how long you’ve been out there hitting balls? No? Then stop swinging that club!’”

At press time, Walsh was looking forward to playing in a husband-and-wife tournament at The Leewood Golf Club in Eastchester.

The Only Man in the Waiting Room

“When I told people I had breast cancer, they would look at me like I had three heads,” Mike Rosa of Thornwood says. “They believed that men don’t get breast cancer or that only overweight men who have ‘man boobs’ get it.” But nearly 2,000 men will get the disease this year (compared with more than 200,000 women), according to The National Cancer Institute.

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Two years ago, Rosa, a building engineer for Verizon, noticed a strange pimple on one of his nipples. He thought it would go away eventually, but it kept getting larger. Finally, his wife insisted he see his primary-care physician. “He took one look and sent me to see a breast-cancer specialist. It turned out to be Stage II cancer—I’ve blocked out what type—and I was in the OR a few days later.”

Rosa had a mastectomy (he says his scar, about an inch in diameter, looks like a bullet hole), followed by 16 weeks of chemo, one session every other week. “That whole year was a blur. A woman I met at chemo said that I’d look back on this as the year I lived through hell—she was right. But now I feel good and get checked every six months. Of course, I’m the only man in the waiting room, and I get some strange looks.”

To prevent a recurrence in his other breast, Rosa’s oncologist put him on Tamoxifen, which interferes with the activity of estrogen. Just 18 months into a recommended eight-year regimen, he is fed up with it. “I have severe leg pain and night cramps so bad that I scream, and the hot flashes are unreal,” Rosa says. “I keep a thermometer near me and keep checking it, but it is always 98.6 and still I’m burning up.”
To cope, Rosa works on vintage Volvos. “Whenever things get too bad, I go to my garage. It helps, but I think about this every day of my life, wondering what’s next.”

The Young Mom

At 34, Monique Johnson of Tuckahoe was on top of the world. Her husband, Dean, had just landed his dream job and she had given birth to Jack, a new brother for three-and-a-half-year-old Chloe. During a routine postnatal checkup, Monique commented that her right breast “felt weird.” Her OB-GYN guessed it was probably a blocked milk duct but sent her for an ultrasound and a needle biopsy to be on the safe side.

“I was having the first professional photos taken of my two children when I got the call that I had breast cancer,” Johnson recalls. In addition to the tumor, there were invasive cells throughout her breast. She had to have a mastectomy followed by chemotherapy and Herceptin treatment, a targeted therapy that latches on to cancer cells and keeps them from dividing and growing. “I was supposed to be home on maternity leave, enjoying my new baby and little girl,” she says. “Not this.”

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A social worker, Johnson knew she had to figure out some way to manage. She went to support groups but felt even more alone; most of the women were older, and had very different concerns. That changed when she met another young mother, Grace Ann Acocella–Pensiero. “We could talk about what it was like to be a mom, how to balance ballet classes and chemo. We felt there should be a group dedicated to young survivors, one that emphasized the emotional needs of women with young children and those just married, or still dating.”

So the two founded In the Pink Foundation (inthepinkfoundation.org) and hold support groups at Gilda’s Club (Johnson is currently working on forming a strategic alliance with the organization to expand its offerings). “We have monthly group sessions and girls’ nights in,” Johnson says. “Sometimes it’s like Cancer Girls Gone Wild.”

 

 

The Pre-vivor

When her husband discovered a lump in her breast, Debbi O’Shea panicked and called her best friend. “She told me to take a deep breath,” O’Shea recalls, “and that she would call her friend, a breast surgeon, to make sure I could get in the next morning. I was just thirty-seven and didn’t know anyone who had had breast cancer. I showed up alone for my appointment that morning and saw all these women sitting in the waiting room, grimly holding their films. A lot of them had their husbands with them—I was such a novice that it never occurred to me it would be a good idea to have someone with me.”

The doctor did a needle biopsy, found the cells benign, but nevertheless recommended surgical removal since the lump was a palpable mass. “When I woke up in recovery, I knew immediately there was bad news. None of the techs would look at me.”

The cancer was Stage I with no lymph-node involvement. After a lumpectomy and six weeks of radiation, O’Shea was in the clear. But she found the constant surveillance—the mammograms and ultrasounds—nerve-wracking. “I was always waiting for the other shoe to drop.”

And then it did. She learned that one of her paternal aunts had just been diagnosed with ovarian cancer and that she had had two previous bouts with breast cancer. “I asked my mom to get a full medical history of dad’s extended family and was shocked to find a laundry list of cancers that we never knew about.” O’Shea went in for genetic testing and discovered she carried the BRCA gene mutation. The genetic counselor figured she had a 65-percent chance for a recurrence of breast cancer, O’Shea says, and a 90-percent chance of developing ovarian cancer.

Although prophylactic bilateral mastectomies were rare in 2000, O’Shea found Mayo Clinic studies showing that women carrying either the BRCA 1 or BRCA 2 mutation could reduce their risk of cancer by 90 percent by having the procedure. “I knew my odds and I believed it was the best option. If I didn’t go through with it and then had a recurrence, I’d never be able to forgive myself. I decided to be a ‘pre-vivor’ and take defensive action against getting cancer again.” She had the nipple-sparing surgery pioneered by the Ashikari Breast Center in Dobbs Ferry on both breasts. Fourteen healthy years later, she says she knows she made the right decision.

The Optimist

Other than having Stage IV cancer, I’m perfectly healthy,” says Katonah resident Bonnie Depp.

It started with a routine mammogram in January 2007. Depp, now 66 and a freelance editor, had a small tumor—Stage I—but the tumor was triple negative, meaning it had no receptors for estrogen, progesterone, or HER2, and does not respond to standard hormonal treatments for breast cancer.

A lumpectomy was followed by eight sessions of chemo. “The chemo itself didn’t bother me much at all. It was much more traumatic to lose my hair.” But it grew back—curly—and stayed that way for a few months. Radiation treatment followed, and, for about a year, Depp felt fine.

Then she started experiencing dizziness and severe nausea. The original breast cancer had metastasized to her brain: an MRI found one large lesion in the cerebellum (the part of the brain that controls balance) and two smaller ones. “When I saw the scans of the first brain ‘met,’I thought that can’t be me.” The larger tumor was removed surgically; the smaller was treated with very focused radiation.

Six months later, while out horseback riding, Depp had a seizure. Some of the treated brain cells had died, causing swelling. More surgery, more radiation, more chemo. A few months later, Avastin, an adjunct treatment to chemotherapy that retards the growth of new blood cells, was added to her regimen. “The treatment was working,” she says. “I was fine for a year. My husband was always on the Internet researching new treatments for me and that helped keep my spirits up.”

And then, doctors discovered that a very small tumor had metastasized to her lung. She was put on different drugs and her tumor monitored with CAT scans and MRIs. “I had very few effects from the brain surgery and saw no change from lung ‘met.’ Of course, I’m tired from the radiation and all and need naps, but I have to wonder: is it the drugs or the age?”

Still, that doesn’t stop her from riding horses once, sometimes twice, a week at Echo Farm in South Salem, traveling to California to see her son and his wife, knitting for fun. The only concession she has made to cancer is to drop her freelance writing. “I can’t multitask anymore. Where I once would do six things at once, now I only do one.”

Last June, it became clear the combo of drugs wasn’t working any more—the tumor was still growing. “While only fifteen percent of breast cancers are triple negative, finding treatments for it is the new ‘hot’ research,” Depp says. “There are a number of chemo regimens to use—you do things in sequence and see what responds.” She is getting a second opinion at Massachusetts General and a third at Dana Farber. “I’m hoping for something that probably doesn’t exist: the answer. But I’ll settle for guidance to find the best options.”

The Unflappable Patient

One sunny Saturday in May 1994, Peekskill resident Concetta Nardone was bustling about her apartment wrapped in a towel, getting ready for a day of shopping. Her towel slipped and, inadvertently, she flashed her best friend. That errant towel probably saved her life. “I had seen my share of breast cancer patients,” says Laura Capicotto, now office manager for Anthony Cahan, MD, chief of breast surgery at Northern Westchester Hospital, “so when I saw the dimpling on her breast, I knew it was something that should be looked at.”

Nardone wasn’t too concerned. “I still wanted to go shopping, but Laurie insisted that I get a mammogram and sonogram right then and there.” Two days later, a needle biopsy confirmed lobular carcinoma in situ, Stage II. The following week, Nardone had a modified radical mastectomy and had 12 lymph nodes removed; two tested positive. She was looking at six long months of chemotherapy.

Her oncologist advised her to go home and take a nap after her first session; instead she mowed her lawn. After a while, going to chemo felt to her like going to the beauty parlor. “I’d see the same people week after week. I always thought that other people were sicker than I was.” During her treatment, Nardone never missed a day of work at the VA Hospital in Montrose where she has been a recreational therapist for the past 37 years.

Today, 16 years later, she is looking forward to attending her son’s upcoming wedding and has set up an appointment with a plastic surgeon—at The Breast Institute where her friend works—to look into reconstructive surgery.

Resources
For all: American Cancer Society, cancer.org
Gilda’s Club, gildasclubwestchester.org
Support Connection, supportconnection.org
For young survivors: inthepinkfoundation.org
For those with a family history of cancer: facingourrisk.org
For those with metastases: bcmets.com

Breast Centers:
Ashikari Breast Center Community Hospital at Dobbs Ferry
Dobbs Ferry (914) 693-5025

The Breast Institute at Northern Westchester Hospital
Mount Kisco (914) 242-7640

Greenwich Hospital: Breast Care Center
Greenwich, CT (203) 863-3711

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