Here’s a story that ran in Sunday’s Life & Style section by reporter Heather Salerno. All photos are by Tania Savayan.
A mother’s choice: Allison Gilbert tests positive for breast cancer gene, makes life-altering decision
Irvington’s Allison Gilbert knows exactly what the human face of cancer looks like.
It’s the face of her grandmother, Henny, who died of breast cancer when Gilbert was a little girl. It’s the face of her mother, Lynn, who died of ovarian cancer in 1996. It’s also the face of her father, Sidney, who died of lung cancer five years later, leaving Gilbert an adult orphan at 31.
A few years after losing her dad, Gilbert discovered that this disease’s attack on her family wasn’t random: It’s a tragic birthright. Testing showed that she inherited a mutation in a gene called BRCA1, which drastically increases her chance of getting breast cancer, ovarian cancer or both. In fact, she was told that — without intervention — the odds of developing breast cancer in her lifetime were as much as 85 percent.
That revelation increased Gilbert’s fear that she might die young like her relatives, leaving her husband, Mark Weintraub, and their two children – Jake, now 12, and Lexi, 10 — behind. In 2007, with her family complete, she underwent surgery to remove her healthy ovaries — a decision The Journal News chronicled — and she continued to see doctors every three months for a breast exam, mammogram, sonogram or MRI, in order to catch breast cancer in an early stage. With each appointment, though, there was the potential for a dreadful diagnosis.
Gilbert had another option besides careful surveillance: another prophylactic, or preventive, surgery. Removing both still-healthy breasts would reduce her odds of getting breast cancer to about 1 percent, far lower than the average woman, whose lifetime risk is about 12 percent.
The Journal News caught up with the 42-year-old this year, after she made the decision to go forward with that operation, and followed her throughout the surgical process, in real time and on Facebook. The move, she hopes, will keep her around for Jake and Lexi for a very long time.
“I’m trying to make this a parenting decision,” she says. “It’s really about my kids. Even though it’s my body, I feel it’s really more about them than it’s about me.”
Given her family history, it’s a choice that Gilbert knew she’d have to make eventually. But for her, the turning point came in 2008, when her beloved aunt, Ronnie, her mother’s sister, told the family that she, too, had an aggressive form of breast cancer. She passed away barely three months later.
“It was a hard death,” says Gilbert. “Sometime shortly thereafter I went on the warpath.”
9:30 a.m., June 14, New York Sports Club, Dobbs Ferry.
Allison Gilbert is in the middle of the fitness center, sweating and swearing, as she works out with a series of TRX suspension bands. Grunting, she pulls herself up from a squat while resting her right foot on her left knee.
“I hate you, Beth,” she says with a breathy laugh to her personal trainer, Beth Blank.
“Come on, five more,” says Blank firmly. “Good. One more, one more, one more.”
This gym session isn’t about vanity: For months, Blank, who is also a physical therapist and post-rehabilitation specialist, has had Gilbert focus on exercises that will help her recover more swiftly from her upcoming surgery.
Gilbert has gone through a cancer-preventing procedure before: At 37, she had an operation to remove her ovaries and most of her reproductive organs, in order to reduce her chance of getting ovarian cancer by more than 90 percent. She left the hospital with a few tiny incisions in her belly, hip and pelvis, with no complications except symptoms of early menopause.
However, this surgery — a 11.5-hour process set for June 26 at Roosevelt Hospital in Manhattan — will be far more intense.
After a surgical oncologist removes her breast tissue, a team of plastic surgeons will proceed with a form of reconstruction known as a DIEP flap technique. Rather than inserting implants, the most common method, doctors will take excess fat and skin from the abdomen to create new breasts.
So Gilbert is concentrating on strengthening her lower back, pelvis and stomach: Doctors won’t be cutting any abdominal muscles, so a strong core will “enable Allison to get out of bed quicker,” says Blank.
As her surgery date nears, Gilbert has been squeezing in as much time with Blank as possible, hitting the gym at least twice a week. This morning, she’s there before her children get out of school — it’s a half-day — and after a bus came to pick up Jake’s and Lexi’s bags to take them to the New Hampshire sleep-away camp they will attend during the summer. They’ll be away for seven weeks, leaving three days before Gilbert’s operation.
That neat bit of scheduling was planned: Gilbert picked this time so her kids could enjoy themselves at camp, worry-free, while she recuperates.
“I want to be upset if I want to be upset, and not have to disguise my feelings or feel I have to be stronger for them at that moment,” she says. “And to be honest, I don’t think they need to see me at my worst. If I can protect them from that, all the better.”
Her goal, she says, is to be well enough to visit them on a scheduled parents’ weekend in late July.
“That’s the one benefit” of being healthy, she continues. “Without having cancer, you actually get to plan.”
“10 Days And Counting: Today surgical instructions begin: No more Aspirin, Advil, Motrin, Alleve, or any other anti-inflammatory medications. I’m OK with this as far as surgery prep, but I’m having six 10-year-old girls sleepover tonight for my daughter’s birthday party….I guess a glass of wine will have to do??!!!” — Gilbert’s June 16 Facebook post
11:30 a.m., June 18, St. Luke’s-Roosevelt Hospital Center, New York
Gilbert walks out of the hospital’s Patient Services Center, adjusting the sleeve on her black cardigan. She’s just had blood drawn for her last pre-op tests, following a final appointment seven floors upstairs with Dr. Alison Estabrook, chief of the Comprehensive Breast Center, who will perform the double mastectomy part of her surgery in just eight days.
It was no easy task to assemble her medical squad: An author and Emmy Award-winning television news producer, Gilbert turned her skills to interviewing 10 doctors to learn about their surgical methods, patient outcomes and bedside manners — even looking into which hospitals had the highest operating-room mortality rates. It was a process that took about three years.
“I’m not saying everyone should do this,” she says, “but for me, being a reporter who’s done so many stories about bad doctors and bad hospitals, this is where my mind goes.”
Over an omelet at a nearby diner, she confesses that she’s started to get nervous: “Obviously, it’s getting real.”
Part of Gilbert feels “bold and brave and courageous, (that I’m) doing the right thing,” she says. “And the other part of me feels there’s a little bit of crazy. That I don’t have to do this.”
It’s true: Right now, she’s cancer-free and, despite being BRCA1-positive, not everyone with this gene mutation gets the disease. Even if she did, she knows that there are plenty of people who survive.
Still, her personal experience offers a different reality: “There are no survivors in my family. If you get cancer, you die.”
Plus, there was no guarantee that the alternative — regular cancer screenings — would pick up a tumor early, because Gilbert has very large, dense breasts.
“When you have that much breast tissue, it’s going to be very easy to miss something,” says Estabrook.
Besides, Gilbert was simply tired of worrying all the time.
“By taking these steps, most likely I am avoiding a bullet,” she says. Yet she’s careful to note that “nothing about” taking this drastic step “is easy.”
That includes having to make tough choices, like what type of surgery to have. Gilbert didn’t consider a nipple-sparing mastectomy, which would leave the nipple and areola intact. “Even in your nipple, you have breast tissue,” she says. “I wouldn’t go this far and then add back my risk.”
At first, she leaned toward reconstruction with implants, which has a shorter recovery time. But then she learned that implants are often inserted in a two- or three-step process, and they typically need to be replaced down the road.
“I don’t want to manage this,” says Gilbert. “I want to be done.”
So she began learning more about the DIEP flap process.
It’s more complicated: Not only would Gilbert be under anesthesia for nearly a half-day while surgeons did their work, two parts of her body would be affected. But she liked the fact that her new breasts wouldn’t be made from a foreign material; plus, they’d feel more natural, since abdominal tissue is similar to breast tissue. (Not to mention, she’d have a flat belly from the tummy tuck that comes with the procedure.)
That narrowed the list of plastic surgeons, particularly because she wanted a microsurgeon who specialized in this reconstruction; with the DIEP flap, many tiny blood vessels need to be clipped from the abdominal tissue and reconnected to the chest, similar to an organ transplant. Ultimately, Gilbert went with Dr. Mark Smith, director of Plastic and Reconstructive Surgery for Continuum Cancer Centers of New York, and Dr. Mark Sultan, chief of the Combined Division of Plastic Surgery at St. Luke’s-Roosevelt, a team that works closely with Estabrook.
Then came the really hard part — telling the kids.
Again, being protective, Gilbert hadn’t planned to tell Jake and Lexi about the surgery until a week or two before: “I didn’t want to tell them earlier, because I figured more time for nervousness, more time for questions.”
Lexi changed that plan, though, after flipping through her mother’s day planner and asking, “Mom, what’s ‘surgery’ on June 26th?”
So Gilbert explained to her children that because Grandma Henny, Grandma Lynn and Aunt Ronnie died of cancer, she was replacing her breasts so she could be with them for as long as possible.
“I love you more than my chest,” she told them.
They had some questions — Jake was concerned that she wouldn’t physically look the same – but the most upsetting one came from Lexi a few weeks later.
“I think she said something in the car, like, ‘Do you think I’ll have to do this when I’m older?’ ” says Gilbert, holding back a sob. “That was a really hard thing to hear her say.”
It’s hard, too, for Gilbert to think about losing another key part of her womanhood. But for now, she has to focus on the task at hand.
“I know it’s going to impact me greatly,” she says. “But then I have to come down to what’s the goal? The goal is to stay alive.”
“My husband may have given me poison ivy. I have a red blotch two inches below my bra line and another red blotch on the right side of my waist. I don’t think they’ll do surgery if I have poison ivy. Going to dermatologist today.” — June 22 Facebook post.
“Surgery is officially postponed because of poison ivy. Saw my plastic surgeon this morning and he says it’s not worth the risk. A total of four surgeons are now checking calendars to pick new date.” — June 25 Facebook post.
So on what was supposed to be the day before her surgery, rather than packing her suitcase, Gilbert is at a local supermarket with her husband, Mark. The refrigerator at home is nearly empty, since the kids are away and she expected to be in the hospital through the weekend.
At the moment, they have no idea when her surgery will take place. All of Gilbert’s careful planning is out the window.
“I’m so annoyed,” she says. “Totally awestruck.”
She explains that Smith felt there was no reason to risk an infection, because the operation is elective and Gilbert has a rash that’s still spreading. It’s the first time in his career that he’s had to cancel a surgery because of poison ivy.
“I’m so done,” says Gilbert, sighing. “I don’t want to worry about this anymore. I don’t want to reschedule anything anymore. I just want it to be done.”
“Thank you so much for your encouragement and support. The new date for the surgery will be Tuesday, August 7, 2012. Onward!” — July 9 Facebook post.
“7 Days And Counting: The hardest part of being a week away from surgery is living life in a bubble…I worry about the blister I just got on my pinky toe because I don’t want an open wound to be a source of surgical infection. I worry, I worry…” — July 31 Facebook post.
10 a.m., Aug. 6, Gilbert’s Irvington home.
Gilbert stands over a small black suitcase in her spotless living room, mentally going over a to-do list. The house is clean, her office is organized and the freezer is stocked with food. All she needs to do to prepare for the following day’s operation is finish packing.
Sippy cup and straws? Check. Raising her arms to drink from a regular glass will likely be painful post-surgery. A light robe? Check. That will make her more comfortable while walking in the chilly hospital hallways to regain her strength.
Reconstruction recovery camisole? She tosses that in there, too, though Gilbert makes a face at the white tank top, designed with special pockets to accommodate surgical drains that will be left in her chest for a few days to remove excess fluid.
“And I was told to bring ChapStick because I guess your lips get really chapped,” she adds.
Though a little anxious, Gilbert is having no second thoughts about the decision to remove her breasts. If she developed breast cancer in the future, she says she would regret not having had the operation.
“Knowing that I can do something about this, I think all of it — all of it — will be worth it for sure.”
Her husband, Mark, agrees, adding that he’s grateful the surgery is a preventive choice — not part of a cancer treatment.
“However hard this is to do now and clearly this is the hardest thing Allison has ever had to do … but it’s so much better than what it could be,” he says. “We’re making a decision without a gun to our heads.”
Gilbert kisses Mark as he heads out on an errand, and moves into the kitchen to review the detailed schedule that the two have drawn up for the rest of the month.
Postponing surgery required a different “battle plan” for her recovery, because their children will be home from camp in just a few days. Gilbert won’t be able to drive for a month, and Jake and Lexi don’t start school for another three-and-a-half weeks.
So Plan B includes Gilbert’s stepmother coming to stay for a week, followed by Mark’s mother. The kids also will spend time in New Jersey with their cousins, as well as in Pennsylvania with Gilbert’s brother and his family.
“It’s the head-on collision aspect that’s happening now,” says Gilbert. “That is exactly the dynamic I wanted to avoid. But it’ll have to be what it is.”
“Hi everyone. It’s Mark, Allison’s husband. The surgery went extremely well — the surgeons were very pleased. They went in with a plan and were able to do everything the way they had envisioned…Allison went in at about 8 a.m. and I saw her in recovery at about 8 p.m. Quite a day. Despite that, she looked and sounded great!! She’ll be in her room by 11 p.m. or so. Thanks to everyone for all your support throughout.” — Aug. 7 Facebook post.
11 a.m., Aug. 16, Irvington.
It’s nine days after her surgery, and Gilbert is shuffling slowly around her house. She’s pale and her shoulders are slightly hunched, since it hurts to stand up straight.
She can’t push or pull doors, sleep on her stomach,or even pour herself a cup of coffee — anything that would put undue pressure on her healing chest and stomach. Both areas are scarred, swollen and bruised, yet she has a bright smile on her face.
That’s because Gilbert is progressing far better than imagined: She was released from the hospital two days ahead of schedule, which, she says happily, allowed her to greet Jake and Lexi when they came home from camp.
Gilbert says that the hospital nurses were amazed by her ability to get out of bed right away, and she already has enough mobility in her shoulders and arms to wash her hair by herself. It’s something she attributes to her pre-op workouts with trainer Beth Blank.
“She recuperated very quickly,” agrees Smith, one of her plastic surgeons. “You never know how patients will respond, but I think she was very motivated, so she bounced back quickly and was up and around remarkably fast.”
Still, she says those first days in the hospital were rough. She’d burst into tears because of physical discomfort and the emotional toll of worrying that she might accidentally split the stitches across her chest and abdomen. She also had to breathe into a device every few hours to increase her lung capacity, since she was under anesthesia for so long.
“You feel like you’ve been hit by a truck,” she says. “I don’t want anyone to think I’m Superwoman, because believe me, I sure didn’t feel like Superwoman.”
As part of the reconstructive process, Smith says hours were spent carefully shaping Gilbert’s new breasts — even going so far as to tilt the operating table to properly position the tissue — so that “any secondary procedures are minimized.”
If she wants, Gilbert can go back later for nipple reconstruction or smoothing scars, but Smith says those can probably be done as outpatient procedures. And she’ll never have to have another mammogram, sonogram or MRI of her breasts again.
But the best piece of news came when Estabrook’s office called with the biopsy results of the breast tissue taken out during the mastectomy. All along, Gilbert had a secret fear that the doctors would find some microscopic cancer cells. It was a worry that had been hanging over her since her mother’s death 16 years ago.
“They called yesterday and everything’s fine,” she says, with a big grin. “It was the call of the century.”
A few weeks later, Gilbert sounds even more upbeat.
She’s lost 17 pounds, and the swelling in her chest has gone down, revealing an unexpected bonus: Her reconstructed breasts are close to her previous size, giving her a more proportionate figure than doctors had told her to expect. She’s also already returned to CNN as a freelance producer.
All that concern about shielding Jake and Lexi from this experience has disappeared, too. She and Mark were proud to see how the children rose to the occasion, leaping to help their mother. They’ve volunteered to do the dishes and set the table, and the two often tag along on the evening walks she now takes as part of her healing.
“I feel this is a jump-start to a healthier life,” says Gilbert.
“I feel unencumbered and unburdened and this cloud is gone. I look in the mirror and see scars that are raw and big — and I know they’ll fade — but I don’t care. Even if it were like this forever, it would be ok.”
Finally, she says, “I feel free.”