While walking down a fluorescent-lit hallway at Mount Sinai Hospital's Dubin Breast Center in New York City, Sandra Lee came upon a room filled nearly floor-to-ceiling with discarded beds, tables, and chairs. This is a hot mess, she thought, immediately picturing ways to reorganize the space. Just 2 days after having a double mastectomy -- cancer surgery to remove both of her breasts -- she couldn't resist the urge to redesign. But just moments after leaving the room, Lee broke down in tears.
"I'm not good at disorganization and chaos," she says. "I think that somehow, subconsciously, I must have been feeling completely out of control. That is a challenge for me."
Lee has been firmly in control since her childhood in Sumner, WA. To feed herself and her four siblings on a limited budget, she came up with recipes using inexpensive packaged ingredients like canned soup and biscuit mix. She parlayed those "semi-homemade" meals into a best-selling book series and a string of Food Network shows.
In late March 2015, Lee, who was then 48, reigned over a multimillion-dollar food and lifestyle empire when People magazine honored her as one of its "Most Beautiful." Just minutes after she'd completed a photo shoot for the issue, her doctor called with test results from a recent mammogram: Lee had ductal carcinoma in situ (DCIS), an early form of breast cancer.
"That word will put the fear of God in you like you've never felt before."
That's how Lee narrates the start of her new HBO documentary, Rx: Early Detection -- A Cancer Journey With Sandra Lee, which premiered in early October.
The film offers a frank and unflinching look inside Lee's diagnosis and treatment. By giving producer/director Cathy Chermol Schrijver and her small handheld camera total access -- from diagnostic imaging to operating room to recovery -- Lee hopes to give other women with breast cancer the knowledge they need to choose the treatments right for them.
"When I was diagnosed, I went online, as everybody does, to get as much information as possible. And what I needed was not available," Lee says. "What I needed was to see the consequences my decision was going to have. What did it look like for me to make a decision to be as aggressive as possible?"
Actor and cancer survivor Kathy Bates, who was diagnosed with breast cancer and had a mastectomy in 2012, is the film’s co-executive producer. "Lee allowed access -- the cameras were everywhere, from the beginning of her diagnosis all the way through the surgery and the aftermath," Bates says. "It was very painful to watch, especially for somebody who's been through the surgery. When I saw it, I thought, I have to get on board."
Cancer hadn't been on Lee's radar until a routine mammogram picked up an anomaly. "What's interesting is that I normally go [for mammograms] in August, but for some reason this particular year was busy, and I thought I'd just get everything out of the way early. I went in in March. That's 5 months early. So I was very fortunate. It was divine intervention for sure," she says.
Her diagnosis -- DCIS -- is the earliest noninvasive stage of breast cancer. Cancer cells are confined to the milk ducts and haven't spread to other parts of the breast or to the rest of the body. Yet it's hard to forecast the future for women with this diagnosis. Some will get invasive breast cancer, and others won't. And doctors can't accurately predict which women are at risk.
For that reason, treating DCIS isn't one-size-fits-all. "Most women who can safely have a lumpectomy [removing the tumor and some healthy tissue around it] will choose to do that," says Lee's breast surgeon, Elisa Port, MD, who is the director of the Dubin Breast Center.
Usually, lumpectomy is followed by radiation therapy. Depending on the extent of the cancer, other options include a total mastectomy (removing one breast) or a double mastectomy (removing both breasts).
Often the decision hinges on three things: How much cancer is in the breast, whether there are multiple areas of cancer in one breast, or if a woman carries cancer susceptibility genes like BRCA 1 or BRCA 2, Port says. Lee's cancer was in three separate areas of her breast, and it had traveled throughout her duct system.
Personal preference plays into the decision, too. "You feel like you're a sitting duck," says Kristi Funk, MD, a breast cancer surgeon and medical director of the Pink Lotus Breast Center in Los Angeles. "That stress -- living with the anxiety and fear of recurrence or new cancer in the opposite breast, or dealing with the surveillance required -- can all push a woman toward choosing a double mastectomy."
The higher chance of getting DCIS or invasive cancer in the opposite breast is small -- about 1% each year -- but "it's a very personal decision," says Lori J. Goldstein, MD, a professor of medical oncology and deputy associate director of clinical research at Fox Chase Cancer Center in Philadelphia. "It just depends on what level of risk a woman is willing to live with."
Lee says she chose the more radical surgery because, "I wanted to be as aggressive as possible. I'd like to be on the planet for as long as possible."
Partners in Recovery
Cancer treatment can be a long and lonely road, but Lee had a strong support network. Her longtime partner, New York Gov. Andrew Cuomo, was by her side throughout her treatment and recovery. He walked her into the operating room (she refused to be wheeled in on a gurney), and whispered in her ear, "You're a beautiful lady from the inside out" before her surgery.
She says she never worried that removing her breasts might diminish his affection for her: "Our relationship is past that. And he's not shallow like that."
Cuomo, along with Lee's sister, Kimber, helped nurse her back to health. And Cuomo was there when her recovery hit a snag in August 2015 and she was hospitalized for an infection.
A few celebrity breast cancer survivors also guided her through the process. "Rita Wilson advised me when no one knew I had it. Melissa Etheridge was very open with me. Robin Roberts was my sister through the whole thing," Lee says. "These women -- these sisters who understood what it would mean if people found out -- were behind the scenes in that 6-week period of time. They were profoundly thoughtful and were my core group that I could ask things of."
In September 2015, almost exactly 4 months after her double mastectomy, Lee announced on the Emmy red carpet that she was cancer-free. She's since had surgery to reconstruct her breasts.
Paying It Forward
Lee has become a vocal advocate for early breast cancer detection. "It's one of the ways to ensure you will live as long as you can," she says.
Breast cancer screening guidelines differ by organization, but most groups recommend that women who are at average risk start having annual or biennial screenings between ages 40 and 50. When you start screening and how often you get mammograms "is very individual," says Goldstein, based on your family history and other things.
Yet many women don't have the luxury of getting routine mammograms. "One of the reasons why women don't get in to have their annual is because they may be deciding between paying rent, paying for heat, or buying food," Lee says. "Another reason is time. The clinics and hospitals are only open from 9 to 5 or 8 to 4. So we have taken those two challenges off the table in New York."
In 2016, she teamed up with Cuomo to introduce new legislation called No Excuses. The law extends screening hours at hospitals and clinics, requires insurance companies to pay all copays and deductibles, and offers paid leave to public employees for breast cancer screenings. She's now taking the proposal to governors and first ladies around the country in a grassroots effort to get the law passed in other states.
"People who need care who can't afford care will be able to get it, thanks to Sandra's bill," Bates says. "I just caught fire from her."
"I feel like through my messaging and my openness, we will be able to save lives and have women diagnosed early rather than later," Lee says. Her message has already resonated close to home. After her diagnosis, three women in Cuomo's office -- all in their 30s and 40s -- were encouraged to get mammograms. All three were diagnosed with breast cancer.
Since her cancer therapy, Lee has had to work to get back on track. Three years after her surgery, "I finally feel like I'm back to me," she says. "I'm getting my energy back, and I'm getting my focus back. My life is where it needs to be -- well-rounded and thoughtful -- and that's all I can ask for."
More About DCIS
Ductal carcinoma in situ, or DCIS, is the earliest stage of breast cancer. It forms in the milk ducts of the breast.
Where Does It Start?
If you were to peer inside each breast, you'd see what looks like an upside-down cluster of grapes. The grape-like structures are milk-producing glands called lobules. At the end of each cluster is a stem, or duct, that carries milk to the nipple. DCIS hasn't spread beyond the ducts. "In situ" means "in place." For years, experts have argued over how exactly to define and treat this cancer, given that some women with DCIS will never get invasive cancer.
‘A Spectrum of Diseases’
The challenge is that it doesn't behave the same way in every woman. "We know DCIS is a spectrum of diseases. Some are aggressive. If left alone, they will absolutely progress to invasive cancer and become life-threatening," says Port, the Dubin Breast Center director. "There's low-, intermediate-, and high-grade DCIS."
DCIS needs to be treated, but the choice of therapy can vary. "The question is which surgery is best for the patient, and some of that is based on the location and how many areas of disease there are. And some of it is based on a patient's choice," says Goldstein, the Fox Chase Cancer Center clinical research director. "The decision is made with the patient and the physician."
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