Jolie's Double Mastectomy May Be Overused, Experts Say

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.

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Data Addressing Patient And Physician Barriers To Clinical Trials To Be Presented By Experts

Main Category: Cancer / Oncology
Also Included In: Clinical Trials / Drug Trials
Article Date: 17 May 2013 - 1:00 PDT Current ratings for:
Data Addressing Patient And Physician Barriers To Clinical Trials To Be Presented By Experts

Researchers from University Hospitals Case Medical Center's (UHCMC) Seidman Cancer Center in Cleveland, OH, will present findings from two studies evaluating new technologies designed to address common barriers to patient enrollment in clinical trials. Results from a large-scale, randomized trial demonstrated that the use of tailored, web-based videos delivering educational information to patients before an oncologist visit can significantly improve knowledge and reduce attitudinal barriers that impact enrollment in clinical trials. A second, preliminary study showed that a new automated technology created by UHCMC researchers helped oncologists identify clinical trials for individual patients in a busy outpatient oncology clinic.

"Although clinical trials are the key to developing new, better cancer treatments, less than 10 percent of cancer patients participate in them," says Neal J. Meropol, MD, study author, Chief of the Division of Hematology and Oncology at UHCMC and Case Western Reserve University School of Medicine and member-elect of the ASCO Board of Directors. "We know there are multiple barriers to clinical trials for both patients and oncologists, and the new technologies being evaluated at University Hospitals Case Medical Center Seidman Cancer Center are designed to break down those obstacles by providing individualized education for patients and new technology to help oncologists efficiently identify appropriate trials for their patients."

Common barriers to patient enrollment in clinical trials include fear of side effects, receiving placebo instead of treatment, financial concerns and the misperception that clinical trials should only be considered as a "last resort" option. For oncologists, a common obstacle is the time needed to help identify appropriate clinical trials - thousands of which are currently in progress across the country - for their patients. At the UHCMC Seidman Cancer Center, there are currently more than 300 ongoing clinical trials focused on cancer.

About the Studies

Oral Abstract Session: Health Services Research
Randomized Trial of a Web-based Intervention to Address Barriers to Clinical Trials
Abstract #6500: June 3, 8:00 - 8:15 a.m.

Dr. Meropol will present findings from a trial examining the use of PRE-ACT - Preparatory Education About Clinical Trials - a tailored, interactive, web-based intervention to address patient barriers and improve preparation for consideration of clinical trials as a treatment option. The prospective, randomized, multicenter, Phase 3 clinical trial evaluated 1,255 patients and utilized baseline assessments to determine their top clinical trial barriers. Patients in the PRE-ACT group were presented with a video library of 30-90 second clips that addressed their individual barriers, as indicated by their assessment results. Patients in the control group received online, text-based information that wasn't tailored to their individual barriers. A follow-up survey was conducted to reassess patient knowledge and attitudes.

Results showed that PRE-ACT significantly improved patient understanding and attitudes towards clinical trials when viewed before a visit to an oncologist. The control group also had improved knowledge, reduced attitudinal barriers and improved preparation, but the PRE-ACT group was more satisfied with the amount and format of information presented to them and felt more prepared to consider enrollment in clinical trials when compared to patients who received written information.

Funding for this study was provided by a National Cancer Institute (NCI) grant (R01CA127655) to Case Western Reserve University School of Medicine.

General Poster Session: Health Services Research
Trial Prospector: An Automated Clinical Trials Eligibility Matching Program
Abstract #111482: June 3, 1:15 - 5:00 p.m.

Co-authors Andrew Parchman, MD, Hematology and Oncology Fellow at UHCMC, and Dr. Meropol will present findings examining the use of Trial Prospector - an automated, HIPAA-compliant program pioneered by UHCMC that matches patients to clinical trials based on information extracted from their electronic medical records. Its user-friendly interface allows for physician perusal of relevant clinical trials and eligibility checklists at the point of care without requiring manual data entry. For this study, pilot testing was performed in a GI oncology subspecialty clinic. Eleven oncologists completed surveys after each patient visit to assess the usability and impact of Trial Prospector.

Results showed that the Trial Prospector matching algorithm was 100 percent accurate and saved time identifying potential clinical trials. Physicians generally found it to be easy to use, and 90.9 percent said they would recommend its use for clinical trial eligibility screening. Based on these preliminary findings, Dr. Parchman and team intend to expand data elements to increase the precision of trial matching and expand to other disease specialties and practice locations.

Funding for this study was provided by the Clinical and Translational Science Collaborative of Cleveland, UL1TR000439 from the National Center for Advancing Translational Sciences (NCATS) component of the National Institutes of Health and NIH roadmap for Medical Research to Case Western Reserve University School of Medicine.

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
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