Wednesday, November 2, 2016


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“It’s a tremendous amount to put your body through, and it’s not like we’re going to get our breasts back,” said Rebecca Pine, 40, who decided against reconstruction surgery after a mastectomy.CreditBéatrice de Géa for The New York Times
Before Debbie Bowers had surgery for breast cancer, her doctor promised that insurance would pay for reconstruction, and said she could “even go up a cup size.” But Ms. Bowers did not want a silicone implant or bigger breasts.
“Having something foreign in my body after a cancer diagnosis is the last thing I wanted,” said Ms. Bowers, 45, of Bethlehem, Pa. “I just wanted to heal.”
While plastic surgeons and oncologists aggressively promote breast reconstruction as a way for women to “feel whole again,” some doctors say they are beginning to see resistance to the surgery. Patients like Ms. Bowers are choosing to defy medical advice and social convention and remain breastless after breast cancer. They even have a name for the decision to skip reconstruction: They call it “going flat.”
“Reconstruction is not a simple process,” said Dr. Deanna J. Attai, a breast surgeon in Burbank, Calif., and a past president of the American Society of Breast Surgeons, adding that more of her patients, especially those with smaller breasts before diagnosis, were opting out of reconstruction. “Some women just feel like it’s too much: It’s too involved, there are too many steps, it’s too long a process.”
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Debbie Bowers of Bethlehem, Pa., showed her scarred chest and shared her story in a recent video that was widely shared on Facebook. CreditBéatrice de Géa for The New York Times
Social media has allowed these women to become more open about their decision to live without breasts, as well as the challenges, both physical and emotional, that have followed. For a recent video created by wisdo.com, a social media platform, and widely shared on Facebook, Ms. Bowers and her friend Marianne DuQuette Cuozzo, 51, removed their shirts to show their scarred, flat chests. And Paulette Leaphart, 50, a New Orleans woman whose clotting disorder prevented her from having reconstruction after a double mastectomy, walked topless from Biloxi, Miss., to Washington this summer to raise awareness about the financial struggles of cancer patients.
“Breasts aren’t what make us a woman,” Ms. Leaphart said.
The nascent movement to “go flat” after mastectomies challenges long-held assumptions about femininity and what it means to recover after breast cancer. For years, medical professionals have embraced the idea that breast restoration is an integral part of cancer treatment. Women’s health advocates fought for and won approval of the Women’s Health and Cancer Rights Act of 1998, which requires health plans to cover prosthetics and reconstructive procedures.
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Since then, breast reconstruction has become standard care. More than 106,000 reconstructive procedures were done last year, a 35 percent increase since 2000, according to the American Society of Plastic Surgeons. While it is not known exactly what percentage of women opt for breast reconstruction after a mastectomy, one study found that in 2011, 63 percent of women who were candidates for the procedure chose to have it. In some parts of the United States, the number is closer to 80 percent today.
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Paulette Leaphart of New Orleans walked topless from Biloxi, Miss., to Washington, D.C., this summer to raise awareness about the financial struggles of cancer patients. CreditBéatrice de Géa for The New York Times
In promoting the surgery, doctors cite studies that suggest breast reconstruction improves a woman’s quality of life after cancer. But some women say that doctors focus too much on physical appearance, and not enough on the toll prolonged reconstructive procedures take on their bodies and their psyches. Up to one-third of women who undergo reconstruction experience complications. A systematic review of 28 studies found that women who went without reconstruction fared no worse, and sometimes did better, in terms of body image, quality of life and sexual outcomes.
“That’s the dirty little secret of breast reconstruction: The risk of a major complication is higher than for the average elective surgery,” said Dr. Clara Lee, an associate professor of plastic surgery at Ohio State University who performs the procedure.
Ms. Cuozzo, who appeared in the Facebook video with Ms. Bowers, spent a year having her breasts rebuilt after a double mastectomy, but after four infections in five months, she had the implants removed. The reconstruction, she said, “was getting worse than the cancer.”
While some states, including New York, now require physicians to tell women about the availability of breast reconstruction, women say they often are not informed of the option to remain flat. “I was never told there was a choice,” Ms. Cuozzo said. “I went from the breast surgeon to the plastic surgeon, and they said, ‘This is what you’re going to do.’”
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Marianne DuQuette Cuozzo, who appeared with Ms. Bowers in the Facebook video, had her breast implants removed after four infections in five months. CreditBéatrice de Géa for The New York Times
Dr. David H. Song, chief of plastic surgery at the University of Chicago and immediate past president of the American Society of Plastic Surgeons, said that the risk of complications was real, but that focusing on them was like focusing on plane crashes when “millions of flights land safely.”
Given advancements in surgical techniques, “the aesthetic result can be better than the native breast,” Dr. Song said. “Patients can come out the other end looking more youthful, with a better aesthetic in her breast than before.”
But it is that kind of talk — suggesting that a reconstructed breast is an improvement on a woman’s natural breast — that enrages many women who have undergone mastectomies. For starters, a reconstructed breast is often numb and can no longer play a role in sexual arousal. It often lacks a nipple, since the nipple is usually removed in a mastectomy.
After looking at photos of reconstructed breasts, “I was slightly horrified,” said Charlie Scheel, 48, of Brooklyn, who decided against implants after a double mastectomy. “You don’t have nipples and you have scars everywhere.”
Rebecca Pine, a cancer survivor from Long Island who co-founded a photography and writing project called “The Breast and the Sea,” said, “It’s a tremendous amount to put your body through, and it’s not like we’re going to get our breasts back.”
Ms. Pine, 40, had reconstruction after her first mastectomy, but had the implant removed later when she had a prophylactic mastectomy on her other breast. “They don’t look or feel, in most cases, like our breasts,” she said. “The nerves are cut, so they’re not receptive to feel or touch.”
Dr. Susan Love, author of a best-selling book about breast health, said that doctors aiming to expand access to reconstruction may have become overly enthusiastic about the surgery.
“Surgeons became so proud of what we were able to do that we may have forgotten that not everybody may want it,” Dr. Love said.
Dr. Marisa C. Weiss, founder of breastcancer.org, said doctors should not assume every patient wants reconstructed breasts. “I’ve had go-go dancers who do not want reconstruction and nuns who say, ‘I need reconstruction,’” she said.
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After undergoing a double mastectomy, Charlie Scheel, 48, of Brooklyn, was disturbed by images of reconstructed breasts and decided not to get them. CreditBéatrice de Géa for The New York Times
Some women say physicians pressured them to get implants. When Catherine Stapleton, of Florida, woke up after her mastectomy, she discovered that her breast surgeon, a woman, had left unsightly flaps of skin and tissue that could be used for breast reconstruction later, in case she changed her mind.
“When I woke up from anesthesia, I was in shock,” said Ms. Stapleton, 58, who is now facing additional major surgery to correct the first procedure.
Geri Barish, president of the Long Island advocacy group 1 in 9, said a doctor had chided her when she opted against reconstruction. “One doctor said to me: ‘How can you walk around like that? You look deformed,’” she recalled.
Support groups and social media have allowed women to share stories about the realities of reconstruction. “A lot of the women in my support group had infections, and they were surprised at how many surgeries were involved,” said Alicia Staley, 45, who stayed flat after a double mastectomy. “As I compared notes, I wondered, ‘Why are all these women doing this to themselves?’”
Coming to terms with a flat chest after breast cancer can be difficult. While some women wear a prosthesis in their bra, it is not uncommon for them to stop using it. “They’re heavy, they’re uncomfortable, and they’re in a sensitive area where you have scars,” Ms. Pine said.
Women say they take many of the clothes they wore before surgery to Goodwill and begin wearing scarves and long strands of beads to hide their flat chests. Others try to embrace their new form by having elaborate tattoos inked where they once had breasts. Ms. Pine has a lotus flower tattoo on one side and a dragonfly on the other.
Sara Bartosiewicz-Hamilton, 39, a technical writer in Kalamazoo, Mich., tried two types of implants but had a constant burning sensation and got rid of them. She then started a virtual support group called Flat and Fabulous. “We’re not anti-reconstruction,” she said. “But many women never feel it’s part of their body.”
For Kate Cloudsparks, 64, a farmer in southern Iowa who has been flat since a preventive mastectomy 21 years ago, discovering the Flat and Fabulous Facebook page this year led to her first communication ever with women who had made the same choice.
“I didn’t know anybody else like me. I was carrying it around for 20 years without having anywhere to share it,” she said. “Finally, I had an opportunity to talk about what it’s been like to live as a woman without breasts.”
http://www.nytimes.com/2016/11/01/well/live/going-flat-after-breast-cancer.html?smprod=nytcore-iphone&smid=nytcore-iphone-share&_r=0

Tuesday, October 25, 2016


New test IDs aggressive form of breast cancer


A University of Michigan researcher has invented a technology that can take some of the guesswork out of whether one form of early breast cancer is aggressive and likely to metastasize.
Dr. Howard Petty, a cancer survivor himself, came up with an imaging technology called Biomarker Ratio Imaging Microscopy — or BRIM — that highlights certain proteins in aggressive cancer cells.
His research could help the thousands of American women who are diagnosed every year with ductal carcinoma in situ, also known as DCIS, or stage 0 pre-invasive cancer. Doctors most often recommend removing the DCIS tissue either with lumpectomy or mastectomy because they can’t accurately determine whether it is aggressive or slow-growing and unlikely to metastasize. Radiation often follows to ensure all abnormal cells were destroyed.
But Petty, a professor of ophthalmology and visual sciences, microbiology and immunology, says many times, those are unnecessary treatments.

"With a stage 0 cancer, a lot of those women who  forgo all treatment are fine," he said. "Yet some of the women who  forgo treatment develop invasive breast cancer. We really need to be able to provide a way to assure patients that you really need the surgery or be able to say your cells have not differentiated into a dangerous state. There is no way to make that call. Physicians don’t want to get sued. Patients don’t want to get invasive disease, so we’re paying for 24,000 women a year who don’t need any treatment, but we’re paying for their mastectomies ... and radiation when they don’t need it at all."
Petty hopes his technology also will have implications for other cancers.
"What we have here is a way to determine whether or not any particular cells are dangerous. So I think that’s going to be useful. ... In the short-term, we can help with DCIS. In the longer term, maybe within 3-5 years, maybe we can start helping with other forms of invasive cancer" such as prostate, thyroid and lung cancers.
"What we’re talking about here is personalized medicine."
Petty is working now to launch a new company, called Breithmed Inc., with the help of the University of Michigan. The company would run the BRIM lab tests once the process gets certification.
Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus

http://www.freep.com/story/life/2016/10/25/aggressive-breast-cancer-test/92479272/

Doctors thought he just had jock itch. Then it spread.

  
Late Friday afternoon on Dec. 4, 2014, Stephen Schroeder was waiting to board his packed flight from Philadelphia to Las Vegas for a much anticipated long weekend with his son when his cellphone rang. On the line was an unexpected caller: his doctor, reporting test results sooner than Schroeder had expected.
Listening intently, Schroeder was flooded with disbelief as he struggled to comprehend what he was hearing. Using the lip of a trash can as a writing surface, he scribbled notes on the back of his boarding pass, making the doctor spell out each unfamiliar word. Then he sent a terse text to his wife, who was at their home in the Philadelphia suburbs, and got on the plane.
Onboard, Schroeder, then 55, fired up the balky in-flight Internet, desperate for information.
What he read over the next five hours left him alternately terrified, stunned and then, as denial took over, skeptical. “I kept thinking this must be some kind of really stupid mistake,” he recalled. “The diagnosis had to be wrong.”
Schroeder would discover that the pesky rash he and his doctors had dismissed as inconsequential would take over — and threaten — his life.
The experience would provide a crash course in the importance of finding experts who could provide appropriate treatment, in the necessity of learning as much as possible about a disease, and in the loneliness of coping with a diagnosis so rare it lacks a support group.
A case of jock itch
In the fall of 2013, Schroeder noticed a small, purplish pimple on his groin. “I was pretty sure it was an ingrown hair, so I ignored it for six months,” figuring it would go away on its own, he recalled. The pimple disappeared, replaced by a dime-size red, scaly rash on his scrotum. Schroeder said he assumed it was jock itch — vernacular for a common fungal infection of the groin — and did nothing for several more months.
“I’m a guy,” he said. “It didn’t faze me much.” The director of membership development for a purchasing cooperative, Schroeder had been successfully treated for melanoma, the deadliest form of skin cancer, in 1989. He had not had a recurrence and was always vigilant about annual checkups.
In the spring of 2014, as his primary-care doctor was on her way out the door after a routine appointment, Schroeder said he remembered the red patch “almost as an afterthought” and mentioned it.
She examined the spot, agreed it looked like jock itch and suggested he try the standard treatment: an over-the-counter antifungal cream. Several weeks later, when the problem remained, Schroeder returned. His physician and one of her partners took a look and prescribed a stronger antifungal medicine.
“They both agreed it was nothing to worry about,” Schroeder recalled. “It wasn’t painful, just annoying” and itchy.
The second medicine was no more effective than the first. Schroeder then consulted his dermatologist. He, too, initially agreed it was a stubborn fungal infection, which thrives in moist, dark areas of the body. Later, the dermatologist changed his mind and suspected eczema, a skin inflammation that causes redness and itching. Another possibility, he told Schroeder, was that he had developed contact dermatitis, a common allergic reaction to the shampoo, soap or fabric softener he used.
Schroeder thought that was odd, but he changed his shampoo and soap brands and stopped using fabric softener. “I think he was winging it as he went,” Schroeder said of his dermatologist. The rash didn’t improve.
Fifteen months after the first symptom and a few days before his Las Vegas weekend, Schroeder returned to the dermatologist and asked him to perform a biopsy to determine the cause of the red patch.
“Steve, this is kind of weird,” he remembers the dermatologist saying when he answered his phone at the airport.
Searching for experts
The doctor told Schroeder that his “jock itch” was actually an extremely rare, invasive cancer called extramammary Paget’s disease (EMPD), a malignancy that involves the apocrine glands that produce sweat; it often affects the vulva, scrotum or penis.
The cause of the cancer is unknown and doctors don’t know whether family history plays a role; some EMPD patients have close relatives with breast cancer, as does Schroeder, whose mother battled the disease.
EMPD is slow-growing; a two-year delay between the appearance of the first symptoms and a definitive diagnosis is not uncommon, studies have found. One reason is that it lacks few hallmarks and mimics eczema and other benign skin disorders. In some cases, EMPD reflects an underlying cancer elsewhere in the body, but in other cases, including Schroeder’s, no other cancer can be detected.
If left untreated, EMPD can spread and become lethal. Only a few hundred cases have been reported worldwide, most of them in women over 50.
As Schroeder tried to absorb the news, the dermatologist told him that he knew nothing about EMPD. He recommended that Schroeder consult a plastic surgeon.
Once in-flight and online, Schroeder was aghast at what he read. “It said things like, ‘This is a death sentence,’ ” he recalled. “I was just freaking out. I spent a lot of time praying and a lot of time crying” as surreptitiously as possible. None of his fellow passengers or the flight crew said anything.
The plastic surgeon Schroeder consulted was no help; he told Schroeder he had never heard of EMPD. “I didn’t know how I was going to find the right people. It was a really scary time. I quickly tried to research who is the expert in this,” he said, but found little that was helpful.
Schroeder said it did not occur to him to call specialized hospitals. “I’d never heard of Sloan Kettering,” he said, referring to Memorial Sloan Kettering Cancer Center in New York, a hospital that would later loom large in his life.
“I felt like I was fighting the cancer battle myself. I learned to be inquisitive and to ask questions.” Schroeder called his dermatologist for help finding a doctor and was referred to Bradley D. Figler, then the director of reconstructive urology at Thomas Jefferson University in Philadelphia. He felt reassured when he learned that Figler was treating another man recently diagnosed with EMPD. In fact, Schroeder was the fourth EMPD patient Figler had seen in his 10-year career.
“The cases were all pretty similar,” said Figler, who is now an assistant professor of urology at the University of North Carolina School of Medicine. “They’re all middle-aged white guys.”
In January 2015, Schroeder underwent about eight hours of surgery at Thomas Jefferson to remove the large cancer, which had grown to encompass an area two inches by three inches and to rebuild his scrotum, using skin grafted from his left leg.
Figler said that the operation, which he performed with other specialists, involved Mohs surgery, in which thin layers of skin are progressively removed and examined under a microscope by a pathologist until there is no detectable malignancy. The goal is to remove all cancer while minimizing damage to surrounding tissue. That is particularly tricky in EMPD cases, Figler said, because the cancerous cells often are not clumped together.
“He dealt with pretty radical surgery and a very significant recovery well and took it all in stride,” Figler said. “It’s really difficult to find expertise in this disease. He really sought it out.”
“I think this surgery is difficult on a lot of levels,” the surgeon continued. “Men get a lot of their self-image from this region.”
Figler said it is unclear whether Schroeder’s melanoma 25 years earlier played a role in the development of EMPD.
‘Like an octopus’
After Schroeder’s six-week recovery, the waiting began. Recurrence is the rule, not the exception. “This cancer is almost like an octopus,” he said.
Last year, Schroeder and his wife moved from Philadelphia to Spokane, Wash., to be closer to relatives. In October, he discovered another red patch, not far from the location of the first, and underwent a second surgery in Spokane, less extensive than the first.
One of his doctors pointed him to a study underway at Sloan Kettering involving a noninvasive imaging technique using confocal microscopy, which may be able to detect some cancers earlier than usual and with more precision.
Schroeder enrolled in the study. Earlier this year, doctors there found three suspicious areas near the site of his original surgery, including on his leg; biopsies revealed EMPD in those locations. Two months ago, Schroeder underwent a third operation at the University of Washington in Seattle. He has returned to work and periodically flies to New York for testing as part of the study.
“I’m going to use whatever tools I can find at my disposal to try and keep this thing at bay,” he said.
One of the hardest aspects of his disease is the lack of a peer group. He has never talked to another person with EMPD but hopes to do so and has told his doctors to feel free to give his contact information to other EMPD patients. Schroeder set up a Web page several months ago but so far has not heard from anyone. He says the love and support of his family, particularly his wife, has been essential in helping him recover.
Schroeder hopes his experience will serve as a cautionary tale. “Guys like to put stuff off,” he said. “If this convinces one guy to get something checked out, it’ll be worth it.”
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