Scientists cast doubt on Alzheimer's cancer drug study

Scientists cast doubt on Alzheimer's cancer drug study

(AFP) â€" 1 hour ago 

WASHINGTON â€" Four separate teams of scientists have said they were unable to replicate a highly publicized study that last year touted a cancer drug's success against Alzheimer's disease in mice.

"We wanted to repeat the study to see if we could build on it, and we couldn't," said David Borchelt, a professor of neuroscience at the University of Florida, noting that "it was important to publish the fact."

"Maybe there should be some caution going forward in regard to patients," he added.

The high profile 2012 study in the US journal Science found that mice treated with bexarotene became rapidly smarter and the plaque in their brains that was causing Alzheimer's started to disappear within hours.

The drug was believed to work by boosting levels of a protein, Apolipoprotein E (ApoE), that helps clear amyloid plaque buildup in the brain, a key hallmark of Alzheimer's disease.

"We were shocked and amazed," lead author Gary Landreth, a professor i n the Department of Neurosciences at Case Western Reserve University School of Medicine in Ohio, told AFP when the study was published in February 2012.

"Things like this had never, ever been seen before," he said.

But a key part of science is being able to replicate the findings of any research, and international researchers reported in four separate papers in Science's May 24 edition that they had failed to do so.

Other researchers who published their attempts were Bart De Strooper, director of the VIB Center for the Biology of Disease in Belgium, and Sangram Sisodia, director of the Center for Molecular Neurobiology at the University of Chicago.

The scientists said their studies showed no effect on the plaque levels in three different populations of lab mice treated with bexarotene.

A fourth group of researchers said they observed mental gains in the mice but could not confirm they were achieved by the mechanism initially reported, said co-au thor Iliya Lefterov, associate professor at the University of Pittsburgh Graduate School of Public Health.

"While we were able to verify that the mice quickly regained their lost cognitive skills and confirmed the decrease in amyloid beta peptides in the interstitial fluid that surrounds brain cells, we did not find any evidence that the drug cleared the plaques from their brains."

The findings should also serve as a warning for doctors not to prescribe bexarotene as an off-label treatment for Alzheimer's, researchers said.

The drug, also known as Targretin, was approved by the US Food and Drug Administration in 1999 for treating a type of skin cancer known as refractory cutaneous T-cell lymphoma.

"Anecdotally, we have all heard that physicians are treating their Alzheimer's patients with bexarotene, a cancer drug with severe side effects," said Robert Vassar, professor of cell and molecular biology at Northwestern University Feinberg School of Medici ne.

"This practice should be ended immediately, given the failure of three independent research groups to replicate the plaque-lowering effects of bexarotene."

Copyright © 2013 AFP. All rights reserved. More »

Alabama Mystery Illness Solved

Alabama Mystery Illness Solved

It turns out the mystery Alabama illness was a coincidental cluster of varying viruses, but that doesn't mean public health officials were wrong to raise the alarm, experts say.

Testing confirmed that the seven respiratory illnesses in the southeastern part of the state were the result of a mix of the common cold and a strain of flu, rather than the feared new H7N9 bird flu and the new SARS-like virus currently making headlines in other parts of the world, Alabama Department of Public Health announced Thursday.

"This is a great example of science sorting through the mystery of a 'pseudo-outbreak,'" said Dr. Richard Besser, chief health and medical editor for ABC News. "As expected, these were a variety of infections that just happened to occur close in time."

RELATED: Frenchman Infected With SARS-Like Virus

Health officials became aware of a possible mystery illness on May 16 when seven patients came down with a cough, a fever and shortness of breath, but there wasn't a known cause for these symptoms. Two patients eventually died after coming down with pneumonia, Dr. Mary McIntyre, who is leading the investigation, told ABCNews.com in an email.

RELATED: Bird Flu Crosses Strait to Taiwan

Since the patients had little in common â€" their ages ranged from mid-20s to late 80s, and their test results varied -- the health department couldn't find a link among them.

"You never want to assume that there isn't a connection, because as soon as you do that, you will be proved wrong," Besser said. "The first cases of the next SARS or the next flu pandemic could look very much like this. You treat every one of these clusters the same: You attack it with rapid public health science."

The five patients still alive seem to be getting better, McIntyre said Wednesday. One of them was released from the hospital Tuesday.

WHO urges information sharing over novel coronavirus

WHO urges information sharing over novel coronavirus

23 May 2013 Last updated at 19:11 ET The World Health Organisation says it is closely monitoring the virus

The World Health Organisation (WHO) has urged countries with possible cases of novel coronavirus to share information.

The move comes after Saudi Arabia said the development of diagnostic tests had been delayed by patent rights on the NCoV virus by commercial laboratories.

Twenty-two deaths and 44 cases have been reported worldwide since 2012, the WHO says.

NCoV is from the same family of viruses as the one that caused Severe Acute Respiratory Syndrome (Sars).

An outbreak of Sars in 2003 killed about 770 people. However, NCoV and Sars are distinct from each other, the WHO says.

The virus first emerged in Saudi Arabia, which is where most cases have since arisen.

Saudi Deputy Health Minister Ziad Memish raised his concerns at the World Health Assembly in Geneva.

"We are still struggling with diagnostics and the reason is that the virus was patented by scientists and is not allowed to be used for investigations by other scientists," he said.

"I think strongly that the delay in the development of ... diagnostic procedures is related to the patenting of the virus."

'Uncertainty'

WHO chief Margaret Chan expressed dismay at the information.

"Why would your scientists send specimens out to other laboratories on [sic] a bilateral manner and allow other people to take intellectual property rights on a new disease?" she asked.

"Any new disease is full of uncertainty."

She urging the WHO's 194 member states to only share "viruses and specimens with WHO collaborating centres... not in a bilateral manner."

She added: "I will follow it up. I will look at the legal implications together with the Kingdom of Saudi Arabia. No IP (intellectual property) should stand in the way of you, the countries of the world, to protect your people."

WHO's assistant director-general for health security, Dr Keiji Fukuda, said his agency had also been "struggling with diagnostics" because of property rights concerns and ill-defined international rules for sharing such materials, AP news agency reported.

Cases of novel coronavirus have been detected in Saudi Arabia, Jordan, Qatar, the United Arab Emirates, Germany, the UK and France.

Twenty-two of the 44 cases reported worldwide have been in Saudi Arabia, WHO says.

Out of the 22 deaths, 10 of them have been in the kingdom, it adds.

Feet home to more than 100 fungi

Feet home to more than 100 fungi

22 May 2013 Last updated at 13:00 ET By Helen Briggs BBC News The feet are home to a whole community of fungi

We all have nearly 200 different types of fungi colonising our feet, scientists have discovered.

Fungi live all over the human body, but their favourite spots are the heel, under toenails and between the toes, according to a US study.

A new map of the body's fungal diversity could help combat skin conditions such as athlete's foot, researchers report in Nature journal.

Harmless fungi live naturally on skin but cause infection if they multiply.

In the first study of its kind, a US team catalogued the different groups of fungi living on the body in healthy adults.

Continue reading the main story

Fungal skin infections

• Fungal infections are common and include athlete's foot, ringworm and yeast infections
• Athlete's foot, also called Tinea pedis, is a very common fungal infection of the foot, causing peeling, redness, itching, burning, and sometimes blisters and sores
• Fungal nail infections affect about three in every 100 people in the UK
• The most common symptom of a fungal nail infection is the nail becoming thickened and discoloured. it can turn white, black, yellow or green.

A team led by the National Human Genome Research Institute in Bethesda, Maryland, sequenced the DNA of fungi living on the skin at 14 different body areas in 10 healthy adults.

Samples were taken from the ear canal, between the eyebrows, the back of the head, behind the ear, the heel, toenails, between the toes, forearm, back, groin, nostrils, chest, palm, and the crook of the elbow.

The data reveal that fungal richness varies across the body. The most complex fungal habitat is the heel, home to about 80 types of fungi. The researchers found about 60 types in toenail clippings and 40 types in swabs between the toes.

Other favoured fungal hotspots include the palm, forearm and inside the elbow. These had moderate levels of fungi, with each location supporting 18 to 32 types.

Continue reading the main story

“Start Quote

The bottom line is your feet are teeming with fungal diversity, so wear your flip flops in locker rooms if you don't want to mix your foot fungi with someone else's fungi”

End Quote Dr Julia Segre National Institutes of Health, US

In contrast, the head and the trunk harboured fewer varieties of fungi - just two to 10 each.

"The data from our study gives us a baseline about normal individuals that we never had before," said lead researcher Dr Julia Segre.

"The bottom line is your feet are teeming with fungal diversity, so wear your flip flops in locker rooms if you don't want to mix your foot fungi with someone else's fungi."

Tremendous diversity

The study defines the normal populations of fungi across the skin, which provides a framework for investigating fungal skin conditions.

In 20% of volunteers, the researchers observed problems consistent with fungal infections.

An imbalance of microbes may provide an opportunity for harmful microbes to flourish and establish disease, they believe.

Commenting on the study, fungal expert Dr Paul Dyer of Nottingham University, said fungi could normally co-exist quite happily on the body without causing any harm, except in people with poor immune systems.

"It illustrates the tremendous diversity of fungi that grow on the human body," he told BBC News. "This is much higher than we previously knew."

Antibody Gets High Marks for Asthma Control

Antibody Gets High Marks for Asthma Control

Action Points

PHILADELPHIA -- Asthma exacerbations decreased by 87% in patients treated with an investigational agent that targets the interleukin-4 (IL-4) receptor, results of a placebo-controlled phase II trial showed.

Dupilumab was associated with an exacerbation rate of 6% compared with 44% in the placebo group.

Measures of lung function and asthma control also improved significantly in the dupilumab arm, and treatment with the monoclonal antibody was associated with a reduction in biomarkers of Th2-driven inflammation.

The drug was generally well tolerated; the most co mmon adverse events were injection-site reactions, nasopharyngitis, nausea, and headache, as reported online in the New England Journal of Medicine and simultaneously at the American Thoracic Society meeting.

"This study targeted those individuals who, on the basis of eosinophil levels in their blood, seemed to have evidence for Th2-type asthma," principal investigator Sally Wenzel, MD, of the University of Pittsburgh, told MedPage Today. "By using this drug that blocks this pathway, we observed a really robust response compared with placebo in patients with moderate to severe asthma."

"The drug improved exacerbations, improved lung function, improved symptoms, and improved asthma control."

About half of patients with asthma have inflammation associated with type 2 helper T-cell (Th2) activation. The Th2-related cytokines IL-4 and IL-13 have been implicated in asthma and atopic diseases. The cytokines signal through overlapping receptors t hat have an alpha subunit of IL-4 receptor, the authors noted in their introduction.

Antibodies that target the IL-4 receptor alpha subunit potentially could inhibit downstream pathways used by both IL-4 and IL-13. Dupilumab targets the alpha subunit and has been shown to inhibit signaling by IL-4 and IL-13.

Wenzel and colleagues reported findings from a randomized, placebo-controlled trial of dupilumab in adults with moderate to severe asthma and elevated eosinophil levels. Eligible patients had persistent, poorly controlled asthma of at least moderate intensity and elevated blood eosinophil count (≥300 cells/mL) or elevated sputum eosinophil level (≥3%).

Eligibility criteria also included an asthma diagnosis for at least 12 months, forced expiratory volume at 1 second (FEV₁) ≥50% of predicted, a score of 1.5 to 3.0 (of a possible 0 to 6) on the Asthma Control Questionnaire (ACQ5), and one or more asthma exacerbations in the 2 years before enrollment.

Investigators at 28 sites in the U.S. randomized 104 patients to once-weekly injections of dupilumab 300 mg or placebo. Randomized treatment continued for 12 weeks or until occurrence of an asthma exacerbation. Patients also received fluticasone and salmeterol twice a day for 4 weeks. Use of inhaled steroids was tapered and discontinued during weeks 6 through 9.

The primary endpoint was asthma exacerbation during the 12-week treatment period. Secondary endpoints included time to an asthma exacerbation and change from baseline to week 12 in FEV₁, morning and evening peak expiratory flow (PEF), morning and evening asthma symptom score, nocturnal awakenings, and number of daily inhalations of a short-acting beta-agonist.

The authors reported that 87% of patients in the dupilumab arm completed the study compared with 67% in the placebo group. The most common reason for discontinuation was lack of efficacy (11 with placebo versus one with dupilumab).

Overall, 26 patients had asthma exacerbations during the trial, three in the dupilumab group and 23 in the placebo group. The difference translated into an odds ratio of 0.08 in favor of dupilumab treatment (P0.001).

With respect to secondary endpoints, analysis of time to exacerbation showed a significant advantage in favor of dupilumab (HR 0.10, P0.001). Patients treated with dupilumab had significant improvement (P=0.05 to P0.001) in all but one secondary outcome, change in evening PEF (4.3 versus -18.4 L/min, P=0.06).

A similar proportion of patients in each group reported adverse events, which were generally nonspecific and mild or moderate in intensity. Three patients in each group discontinued because of adverse events.

The most common adverse events in the dupilumab group were injection-site reactions (in 15 patients), nasopharyngitis (seven), upper respiratory infection (seven), and he adache (six). The most common adverse events in the placebo group were upper respiratory infection (nine), sinusitis (five), and injection-site reactions (five).

The proof-of-principle trial produced compelling data but only for a limited group of patients with asthma, Michael E. Wechsler, MD, of National Jewish Health in Denver, said in an editorial. He noted that only 1 in 5 patients screened for the study met entry criteria.

"We do not know whether dupilumab will be effective in other patient populations, such as the much larger population of patients who use inhaled glucocorticoids and long-acting beta-agonists and do not have eosinophilia," Wechsler wrote.

"Furthermore, although this therapy appeared to be effective in reducing exacerbations as LABAs and inhaled glucocorticoids were withdrawn, in clinical practice, physicians do not withdraw therapy to induce exacerbations.

"Thus, the apparent reduction in deleterious asthma outcomes as therapies were withdrawn only serves to tell us that this biologic therapy appears to work ... but may not be advantageous in a 'real world' situation, and thus the finding offers little direction for clinical practitioners."

The study was supported by Sanofi and Regeneron Pharmaceuticals.

Wenzel disclosed relationships with Sanofi, Merck, Array BioPharma, Genentech, GlaxoSmithKline, Regeneron, Actelion, Gilead, and Teva. Co-authors disclosed relationships with Amgen, Array BioPharma, Boehringer Ingelheim, Cephalon, Cerecor, Circassia, Cytos Biotechnology, Forest Laboratories, Genentech, GlaxoSmithKline, Hoffmann-LaRoche, Johnson Johnson, Meda, Medimmune, Merck, Novartis, Pfizer, Rigel, Sanofi, Shionogi, Sunovion, Teva, Vectura, Sunovion, AstraZeneca, Hycor, KaloBios, Johnson Johnson, Mylan, Revalesio, Roxane Laboratories, Boston Scientific, and Merck. Investigators included current and former employees of Sanofi and Regeneron.

Wechsler disclosed relationships wit h GlaxoSmithKline, Novartis, Cephalon/Teva, Sepracor/Sunovion, NKT Therapeutics, Asthmatx/Boston Scientific, Genzyme, MapPharma, Genentech, Boehringer Ingelheim, Merck, Cytos, and Medimmune.

Primary source: New England Journal of Medicine
Source reference:
Wenzel S, et al "Dupilumab in persistent asthma with elevated eosinophil levels" N Engl J Med 2013;doi:10.1056/NEJM0a1304048.

Additional source: New England Journal of Medicine
Source reference:
Wechsler ME "Inhibiting interleukin-4 and interleukin-13 in difficult-to-control asthma" N Engl J Med 2013; DOI: 10.1056/NEJMe1305426.

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Charles Bankhead

Staff Writer

Working from Houston, home to one of the world's largest medical complexes, Charles Bankhead has more than 20 years of experience as a medical writer and editor. His career began as a science and medical writer at an academic medical center. He later spent almost a decade as a writer and editor for Medical World News, one of the leading medical trade magazines of its era. His byline has appeared in medical publications that have included Cardio, Cosmetic Surgery Times, Dermatology Times, Diagnostic Imaging, Family Practice, Journal of the Nati onal Cancer Institute, Medscape, Oncology News International, Oncology Times, Ophthalmology Times, Patient Care, Renal and Urology News, The Medical Post, Urology Times, and the International Medical News Group newspapers. He has a BA in journalism and MA in mass communications, both from Texas Tech University.

Aimee Copeland gets new hi-tech prosthetic hands

Aimee Copeland gets new hi-tech prosthetic hands

She lost both of her arms and a leg after contracting a rare flesh-eating bacteria, but now, she's been given not one â€" but two â€" helping hands.

Aimee Copeland, a 25-year-old graduate student from Georgia, tragically lost both arms at the elbow and her left leg, as well as her right foot, after contracting necrotizing fasciitis during a zip-line accident in May 2012.

TODAY

Copeland, who is studying psychology, uses the muscles in her upper arms to control the prosthetics, which pick up subtle chemical and electrical currants from her muscles.

The young woman has recently been fitted with state-of-the-art prosthetic hands, a promising new development that will allow Copeland to begin picking up the pieces of her former life.

RELATED: AIMEE COPELAND TELLS KATIE COURIC SHE ‘LOVES’ LIFE

TODAY

The brave young woman has said that she looks forward to being able to cook and clean with her new appendages.

Appearing Friday on the “Today” show, the determined young woman showed viewers how she's overcome her circumstances and has re-learned how to do the simplest of tasks â€" like slicing strawberries and chopping cucumbers.

Speaking with “Today,” she said that she sometimes forgets that all of this has happened. "Sometimes I wake up, and I'm just like, 'Oh my God, is this my life?'"

homephotobank.com

Aimee Copeland, surrounded by hospital personnel, posted to her website on July 7, 2012. The bacterial infection nearly cost Copeland her life.

She was fitted with two prosthetic hands, each costing $100,000, by Touch Bionics, an Ohio-based company. Because she agreed to serve as a spokesperson for the brand, she was given them at no cost.

RELATED: GA. ‘FLESH-EATING BACTERIA’ STUDENT SLOWLY IMPROVING 

Ida Mae Astute/AP

Copeland spoke with Katie Couric on a show in September of 2012 about her injuries and miraculous recovery.

The prosthetics respond to electric and chemical signals in her remaining muscles, her prosthetist, Robert Kistenberg, told “Today.”

"Our electrodes are sensitive enough to pick it up through the skin." While Copeland learns to control her new prosthetics, she admits there is a bit of a learning curve. But Kistenberg says that Copeland is a fast learner and will soon be able to adapt to her new limbs without having to actively think about moving them.

Copeland Family/AP

Copeland was 24 when she was zip-lining with friends on a home-made line. She contracted the flesh-eating bacteria through a gash in her leg and the infection quickly spread.

Copeland was wounded in May 2012 when she was zip-lining with friends. But the equipment failed and, as a result, she nearly lost her life.

RELATED: FLESH-EATING BACTERIA SURVIVOR LEAVES HOSPITAL

The fast-moving bacteria entered her body through a cut in her leg and quickly began to spread, causing five of her organs to fail. In an attempt to save her life, doctors were forced to amputate.

After a year without her hands, Copeland said that she's most looking forward to being able to cook and clean again.

"I'm sort of OCD," she told “Today,” "so it seems like a weird thing to want to do, but I really want to clean."

The brave young woman has also been chipping away at a master's degree in psychology, and hopes to begin a career in social work.

Flesh-eating disease victim gets prosthetic hands

Flesh-eating disease victim gets prosthetic hands

ATLANTA â€" A metro Atlanta woman who lost both hands, her left leg and right foot after contracting a flesh-eating disease was on her way back from Ohio today after being fitted with prosthetic hands.

Aimee Copeland, 25, is returning from Hilliard, Ohio, where she was fitted with a pair of bionic hands with 24 programmable functions that will improve her dexterity, her father, Andy, told the Associated Press.

Copeland of Snellville contracted a rare infection called necrotizing fasciitis in May 2012 after falling from a zip line and gashing her leg.

She spent part of the week at Touch Bionics being fitted for the prosthetic hands that her father says will be controlled by her muscle movements and arm positions.

“All four days she sent us videos of things she could do,” Copeland said. “The second day she was moving water between cups. On the third day she was cutting a cucumber. On the fourth day she was doing more typical things, like applying makeup to her face and more personal things.”

OHSU research team makes stem cell breakthrough

OHSU research team makes stem cell breakthrough

PORTLAND, OR (KPTV) -

Dan Baker still remembers the day he was diagnosed with Parkinson's disease more than a decade ago.

"It hit me real hard. I went into pretty deep depression," he said.

It's a disease where cells in the brain die and are not regenerated.

Symptoms are different for everyone.

For the former teacher, it means trouble with balance and walking.

"I have incredible stiffness if I'm not on top of my game. If I'm not exercising, at times I will freeze," Baker said.

But Wednesday, he received a big spark of hope.

What's considered incurable today may become a thing of the past.

The potential remedy comes from something as common as skin cells.

Scientists at Oregon Health Science University have figured out a way to reprogram them into becoming stem cells, which means they're now able to transform into any other cell in the entire body.

"To treat disease, the only way you could do it is to replace th ose neurons. Unfortunately, you can't take them from anywhere else because they are not available. But now we can make it in a petri dish," Dr. Shoukhrat Mitalipov from OHSU said.

What's exciting about this is that doctors say stem cell therapy holds the promise of replacing cells damaged through injury or illness.

And since the cell was taken from the patient's own skin cell, there's no concern of transplant rejection.

The possibilities are endless.

"We always dream. We always want something accomplished big, but you never think it could happen to you, so it's amazing that we've been able to accomplish it," Mitalipov said.

What's more, this process does not involve the use of fertilized embryos, a topic that has spurred much controversy in the past.

"I think it's an incredible scientific discovery. If they want a test subject, I'm willing to go tomorrow," Baker said

There is still a lot of work and tests that need to be done bef ore this can be used on patients.

Mitalipov estimates it'll take at least several years.

Copyright 2013 KPTV-KPDX Broadcasting. All rights reserved.

Jolie's Double Mastectomy May Be...

Jolie's Double Mastectomy May Be...

Rachel Joy Horn's breasts were ticking time bombs. She lost trust in her body and no longer felt comfortable in her own skin.

This is how she felt, she said, when her doctor broke the news to her that she'd tested positive for a gene mutation that put her in the high-risk category for developing breast cancer. So at the age of 21, Horn chose to undergo double-mastectomy surgery to remove both her breasts and, hopefully, the future threat of cancer.

"By the time I was tested, my mom had gone through breast cancer twice so I already had it in my mind that surgery was a possibility for me," the Los Angeles woman, now 23, said.

Horn is certainly not alone in her decision. Stars like actress Christina Applegate, talk-show host Sharon Osborne and, most recently, Oscar-winner Angelina Jolie have revealed that they, too, have chosen to preemptively removed their breasts because of a strong genetic predisposition for breast cancer.

Jolie's Double Mastectomy Decision for Kids

It sounds like an extreme choice but a woman who has inherited a harmful mutation of either the BRCA1 or BRCA2 gene is about five times more likely than average to develop breast cancer and up to 40 percent more likely to develop ovarian cancer, according to the National Cancer Institute. Experts increasingly believe that removing as much breast tissue as possible can be a lifesaving strategy.

As Dr. Mehra Golshan, director of Breast Surgical Services at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston explained it, "For women who know in advance there is a good chance they will develop breast cancer sooner or later, having prophylactic surgery can make sense. It lowers the risk of developing cancer by more than 90 percent."

In one recent study that followed nearly 2,500 women who carried one of the two dangerous gene variants, having a double mastectomy did appear to lower their risk of breast cancer. None of the women who opted to have their breasts or ovaries removed were diagnosed with breast cancer in the three decades they were followed, while 7 percent of those who chose not to have surgery were.

Horn said that removing her breasts gave her the sense that she had dodged a bullet.

"I remember waking up after surgery and feeling groggy but happy," she recalled. "I immediately felt relieved that I no longer had this cancer diagnosis hanging over my head."

Angelina Jolie's Mastectomy: What You Should Know

But even though the data show a preemptive strike against breast cancer can improve the chances of survival in women with inherited risk, some medical experts are concerned that instead of fighting to save their breasts as they did in the past, many women are choosing to remove them at the slightest whiff of cancer.

The Journal of Clinical Oncology reported a 188 percent jump in the surgery between 1998 and 2005 among women given a new diagnosis in one breast of ductal carcinoma in situ, or DCIS, the "stage zero" cancer. Among women with early-stage invasive disease, the rates soared more than 150 percent.

"Many women choose to have other breast removed to avoid the trauma of going through breast cancer again even though, in reality, the chances of reoccurrence are very low," said Dr. Julian Kim, chief, of oncologic surgery at the UH Seidman Cancer Center in Cleveland.

Doctors, patients praise Jolie's openness on surgery - USA Today

Doctors, patients praise Jolie's openness on surgery - USA Today

The choice actress Angelina Jolie made to have a double mastectomy is increasingly common, at least in the United States, says Lisa Sclafani, a breast cancer surgeon.

Angelina Jolie had a preventive double mastectomy after learning she carried a gene that made it likely she would get breast cancer.(Photo: Evan Agostini, AP)

Angelina Jolie's decision to have both breasts removed because of a high genetic risk of cancer might be hard for some fans to understand. But doctors, counselors and women who deal with such decisions eve ry day say they understand â€" and admire Jolie for her frankness.

"I'm very grateful to her," says Karen Kramer, 48, of Potomac, Md., vice president of marketing for FORCE, a group representing families affected by cancers linked to BRCA1 and BRCA2 genetic mutations.

She had Jolie's surgery four years ago, after learning she had inherited one of the mutations from her father's side of the family. Kramer, whose paternal grandmother had breast cancer twice before menopause, says the decision to have her own breasts removed "boiled down to what fear was greater. I had no fear of having a mastectomy. I had a greater fear of being diagnosed with cancer. That's how it is for many women."

But Kramer's own sister, Amy Kolodin, 45, of Gaithersburg, Md., got the same test results and made a different decision: She had her ovaries removed, but not her breasts "because it just didn't feel like the right time for me," she says. Instead, she goes for mammograms and MR Is every six months. But she says she thinks about breast-removal surgery "all the time."

She says she's also grateful to Jolie for raising awareness.

It is unclear how many women in Jolie's shoes choose preventative breast removal surgeries. A small study published in 2008, suggested it was just over a third of those in the United States, says Lisa Sclafani, a breast cancer surgeon at Memorial Sloan-Kettering Cancer Center, New York. But, she says, "I believe it is much higher now."

QA: Jolie's cancer risk shared by others with genetic flaw

One reason, she says, is that women are learning they can get better cosmetic results with reconstruction surgery than in the past. The nipple-saving procedure Jolie described in the New York Times "can produce very good results," she says. "It looks nice. For patients, that's a big emotional boon."

Patients who choose surgery often have thought about it long before they are even tested for the gene mutations, Sclafani says. "These women have grown up seeing people in their families stricken with cancer and going through treatment," she says. "They've been through tough times."

Women â€" and men â€" who think they are candidates for genetic testing should first discuss their family histories with their physicians, says Rebecca Nagy, a genetic counselor at Ohio State University and president of the National Society of Genetic Counselors. If testing might be appropriate, the next step is an appointment with a genetic counselor, she says.

Counselors typically ask patients to consider what steps they will take if results are positive, Nagy says. Some women who decide they would not have surgery also decide not to take the tests. They would rather live with uncertainty and frequent, possibly unneeded cancer screenings, she says. "Knowing you are at very high risk for these cancers can be scary," she says.

Jolie's openness may help others who face that news, Nagy says: "She's so well known for her beauty and sexuality. So for her to share that she's had an operation that can change your body and your body image could be very empowering for women."

Jolie's announcement will no doubt "keep genetics counselors busy" for the near future, Sclafani says.

But women should know that final choices, about whether to be tested and how to be treated, always are up to them, says Kara Milliron, a genetics counselor at the University of Michigan, Ann Arbor.

"One of the biggest barriers is that patients feel like we're going to tell them what to do," Milliron said. "We only give them the information. We're not here to sell them something or pressure them into something."

Contributing: Detroit Free Press

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