Fertility takes center stage at SABCS

BY SUSAN MCCLURE | DECEMBER 8, 2011

In an educational session that kicked off this year's San Antonio Breast Cancer Symposium, Teresa Woodruff, PhD, noted that survivors experience depression and anxiety because of sterility. Adult survivors of childhood cancer are often afraid to begin dating because they don't want to have that conversation with someone at an early stage in the relationship but are uncertain as to when to initiate it. Young men and women have the same concerns, but these concerns are heightened among young breast cancer patients.

Fortunately for me, I was already married when I learned that I had cancer. I was also the mother of a wonderful two-year-old boy named Ryan, who remains the best and brightest light in my life. That said, at 35, I was devastated when my oncologist told me that I wasn't going to be able to have more children. I had always thought I would have two or three kids and the thought of Ryan being an only child, with no sibling to grow old with, made my heart ache. It still does.

Lance Armstrong announced publicly that he banked his sperm – that was one of the first public acknowledgements that cancer treatment can cause sterility and patients should do something to preserve their fertility before treatment.

In regards to the logistics of preserving one's fertility, men have an easier time, but not all men have been offered sperm banking. There needs to be better patient navigation in adequate time to ensure that men are able to father future generations. Options for women have been available for some time, but are not always used. Navigation is more difficult – Women have to go from cancer care to reproductive endocrinology and then back to cancer care again which is difficult, and quite honestly, scary and stressful.

Woodruff suggested that patients and doctors know that fertility conversations should happen, but she isn't convinced that all newly diagnosed patients are thinking about fertility, even if it is more widely known. What about you? Did your healthcare team bring it up? Were you given a chance to fully understand your options?

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Many women bury their heads in the sand when it comes to mammography screening

BY SUSAN MCCLURE | DECEMBER 9, 2010

Do you remember the public outcry over the recommendation that women over 50 should only have mammograms every two years? Last year, the U.S. Preventive Services Task Force, an independent panel of non-federal experts in prevention and evidence-based medicine, recommended that the age of first routine mammogram be lifted from 40 to 50 years of age, at which biennial mammography begins. This recommendation was counter to the annual standard for women over 40.

We women were upset! How dare the government take away our right to be vigilant with regard to our breast health! How dare they limit screenings for women over fifty, the age group most likely to develop the disease. Marches and rallies were organized, heated debates were broadcast on national TV, and to date, no major insurance company or other organization has acted on the Task Force's recommendation.

Well, guess what? Even with the backlash against the November '09 Task Force guidelines, many women (40 percent) are still not getting mammograms. "Women reacted strongly to that recommendation with protests about their right to have an annual mammogram that should not be taken away," said Milayna Subar, MD, vice president and national practice leader for oncology at Medco Health Solutions, Inc. in New Jersey. "Interestingly, though, we found that a large percentage of women do not get regular mammograms."

Subar and colleagues reviewed medical claims between January 2006 and December 2009 from a database of more than 12 million people. All participating women had either employer-provided insurance or Medicare. Among those who were 40 to 85 years of age, only 50 percent had a mammogram in any given year, and only 60 percent had two or more mammograms over four years. Average annual mammography rates were 47 percent for women aged 40 to 49 years, 54 percent for women aged 50 to 64 years and 45 percent for women aged 65 years and older.

The researchers didn't examine why the women weren't getting mammograms. The data presented were interesting, but to me, the reasons as to why so many insured women aren't being screened begs the larger question.

I decided to conduct my own research. I asked everyone on the CURE staff to call home and ask their moms if they were getting regular mammograms (at least one every two years) and if not, why not?

The results of my very unscientific poll concluded that 25 percent of CURE moms don't get regular mammograms. All are insured. The reasons varied, but overall, fear and denial were the highest factors for not getting checked. One mom said that she regularly makes the excuse that she simply doesn't have the time, but in reality, she's scared to go. Another, who is 83, said she hasn't had one in 10 years because she's "too old to worry about that." One staffer said that the only reason her mom goes is because she "makes her."

Of the 75 percent of moms who do get regular mammograms, most said that they do so because of personal or family cancer histories. My mom, whose own mother and both daughters have all battled breast cancer said, "I go every December because I'm supposed to." She added, "I have a friend who had a lump biopsied years ago. It was benign. She hasn't been back since. I think she's playing ostrich."

What about you? Are you getting regular mammograms? If not, why not?

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33rd Annual San Antonio Breast Cancer Symposium kicks off

BY SUSAN MCCLURE | DECEMBER 8, 2010

What if I told you that losing your hair during chemotherapy may not be inevitable or that sometimes making irrational decisions can be beneficial? Or how about this...did you know that even cancer cells get stressed? Would I have your attention? These fascinating topics will be explored over the next few days at the 33rd annual San Antonio Breast Cancer Symposium, along with presentations on the latest research and treatment in breast cancer.

What began in 1978, when a group of 141 physicians and surgeons from a five-state area got together to discuss ways to reduce the death rate caused by breast cancer in San Antonio and surrounding counties, has turned into an international conference attended by physicians, researchers and advocates from over 90 countries. The overall objective of SABCS, however, remains the same. Its mission is to produce a unique and comprehensive scientific meeting that encompasses the full spectrum of breast cancer research, facilitating the rapid translation of new knowledge into better care for breast cancer patients.

For the next few days, the CURE team will be bringing you updates from this very important gathering of international thought leaders. Not only will we deliver the latest and greatest scientific news surrounding breast cancer, but will also be talking to survivors and advocates about their passionate causes. We'll be blogging, tweeting, writing and filming daily so be sure to follow us!

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Patient Protection & Affordable Care Act (PPACA) shouldn't limit its focus to insurance carriers

BY SUSAN MCCLURE | OCTOBER 5, 2010

Yesterday I was opening a stack of mail that had accumulated in my inbox when I came across a hefty-sized letter from a CURE reader. We get heart-wrenching letters from readers on occasion so I cleared my desk, pulled the tissues close to me and opened it.

To my surprise, it wasn't a letter at all. A single page from our Summer 2010 issue was included with a highlighted sentence regarding upcoming legislative changes intended to give cancer patients improved access to affordable care. The reader highlighted a sentence that said, "The Patient Protection and Affordable Care Act will limit the ability of insurance companies to charge higher premiums based on health status." The article went on to say that eventually it will be illegal for insurance companies to charge higher premiums based on a person's medical history. The envelope also contained stacks of claim detail statements indicating that the reader was responsible for thousands of dollars worth of medical bills because the hospital and the insurance carrier disagreed on the value of the services rendered.

A letter from her employer was also enclosed. It stated that the hospital system where she was receiving care was no longer going to be covered by her insurance carrier because "it was charging up to three times the market price compared to other area hospitals." At the top of that page the reader scribbled, "I have metastasized cancer."

At that point, I realized that the tissues I had pulled close were unnecessary. I wasn't sad--I was mad as hell. How incredibly frustrating! So, this poor patient with metastatic cancer is going to have to find a new healthcare team at an entirely different facility because it was determined, well into her treatment I might add, that the cost of care was too high. Was this a case of price gauging by the hospital or a way for the insurance company to control costs? Who knows? All I know is that this poor reader is stuck in the middle of what is all too common a bureaucratic mess.

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Amgen's Breakaway from Cancer panel tackles some complex issues at ASCO

BY SUSAN MCCLURE | JUNE 10, 2010

Last Friday, Amgen's "Breakaway from Cancer" initiative hosted a star-studded panel discussion at the 2010 American Society of Clinical Oncology annual meeting. The focus was on potential areas for improvement throughout the spectrum of cancer care. Complex topics were covered, ranging from prevention and screening to delivery and access to patient support and survivorship.

Healthcare reform is going to have a tremendous impact on the way care is delivered in the United States. Many uninsured and underinsured families are finally going to have access to quality care, which is a great thing. But what happens when thousands of new patients enter a system that's already maxed-out? Fewer docs are choosing oncology as a specialty, and those currently in practice are struggling to keep up with heavy patient demand. "In order to mount a successful fight against cancer, it's crucial to focus on people who haven't yet become patients. We need a more collaborative approach to prevent cancer," said Carolyn "Bo" Aldige, president and founder of the Prevent Cancer Foundation. She went on to say that half of all cancers would be eradicated if people would make lifestyle changes such as quitting smoking, maintaining a healthy weight, and staying out of the sun. Education is crucial as most people don't realize the power they possess to markedly alter the course of their health.

Screening was another hotly debated topic. Early detection saves lives so why do several effective screening guidelines have yet to be adopted as the standard of care? Panelists blamed the media and agreed that when debates over screening recommendations are hashed out in public, the science is often lost, which gives the public the option of doing nothing. Let's face it... many screenings aren't all that much fun. If no one can agree as to whether getting one actually saves lives, the easiest choice is to postpone the test until a consensus is reached. Not good.

To me, the most interesting topic of the evening addressed the needs of patients once they're diagnosed. How are they being supported throughout their treatment? In many cases the answer is, they're not. Not only do patients need specialists on hand to explain treatment options and next steps, in many cases they need financial counselors, nutritionists, and social workers to help them navigate the journey. "If it's pouring outside, and I have to take two buses to get to my chemotherapy appointment, there's a good chance that I might pull the covers over my head and go back to sleep." said Kim Thiboldeaux, president and chief executive officer of Cancer Support Community. She added that a psychosocial evaluation should be done at the beginning of treatment with checkups along the way to determine how to best meet the needs of patients and their families. This seems simple enough to implement, right? Well, the notion has been met with raised eyebrows because once problems such as depression, financial strain and the like are uncovered, the healthcare provider becomes responsible for getting the patient help for that particular problem,which, as I said early on, they don't have time for!

That leads me to the topic of survivorship. There are 12.5 million of us in the U.S. alone. How are patients supposed to effectively manage the many possible long term and late effects of treatment without having access to specialists whose jobs are to keep their eyes out for warning signs that could lead to recurrence? Ideally, we will be given a survivorship care plan on a pin drive that we'll take with us to our follow up exams. I don't know about you, but I always feel a little guilty taking 15 minutes of my oncologist's time for my annual appointment. I'm 13 years out now, and I know he's busy trying to save the lives of his many patients who are still fighting the good fight. I definitely still go but I rush through the appointment, telling him I'm fine while apologizing for keeping him from more important things. So, here's my idea... what if the government offered incentives to primary care physicians to specialize in cancer survivorship? They would take those calls regarding side aches, depression, and fear of recurrence. They would encourage lifestyle changes and point us to area programs that would support those changes. They'd also take care of all of those screenings we're supposed to get but sometimes avoid.

The Breakaway from Cancer team has some great ideas too. They have developed a nine-step action plan that will soon be made public. Stuart Arbuckle, vice president and general manager of Amgen Oncology, said "We look forward to continuing to work with the Breakaway from Cancer team on initiatives that will continue to drive this dialog, and inspire action in order to provide patients and their families with the best possible care."

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Triple negative breast cancer drug one step closer to approval

BY SUSAN MCCLURE | DECEMBER 13, 2009

On Friday, sanofi-aventis announced that the FDA has granted fast track approval to their investigational PARP1 inhibitor, BSI-201, and that accruals for their phase 3 clinical trial is on schedule and meeting expectations on patient accrual and trial site coverage in the United States. Investigators have enrolled 214 of their target number of 420 patients.

The "fast rack" process is designed to expedite the review of drugs being developed for serious diseases with the potential to address an unmet medical need.

BSI-201 entered a phase 3 clinical trial in the United States in July 2009 and is being evaluated in combination with chemotherapy in patients with metastatice triple-negative breast cancer (mTNBC), a condition defined by tumors lacking expression of estrogen, progesterone receptors and without overexpression of HER2. BSI-201 is a novel investigational targeted therapy that inhibits poly (ADP-ribose) polymerase (PARP1), an enzyme involved in DNA damage repair.

The decision to commence with the phase 3 study in July was based on the encouraging phase 2 study results presented at ASCO on May 31, 2009. In the phase 2 clinical trial, women with mTNBC were randomly assigned to receive gemcitabine and carboplatin (GC) in combination with the investigational agent BSI-201 or GC alone. Updated phase 2 data including overall survival were presented on Friday at a poster session during the San Antonio Breast Cancer Symposium.

The addition of BSI-201 to GC improved median overall survival from 7.7 months to 12.2 months. BSI-201 did not add to the frequency or severity of adverse events associated with chemotherapy. This is not a final analysis of the phase 2 data, but an updated analysis of overall survival. Median survival hasn't yet been reached in the BSI-201 arm, therefore the data cut-off period for the phase 2 trial was from September to November.

"The updated analysis from the phase 2 program, including data on overall survival, are consistent with the positive results presented earlier this year at ASCO," declared Marc Cluzel, executive vice president, R&D, sanofi-aventis. "We are very encouraged by the fast recruitment of patients in phase 3 trial. We hope the findings will lead to emerging strategy that may help women with metastatic triple negative breast cancer."

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New mammography guidelines continue to spark debate

BY SUSAN MCCLURE | DECEMBER 12, 2009

You'll recall the public outcry that occurred in October when the U.S. Preventive Services Task Force issued a report that recommended significant changes to existing mammography guidelines. The debate continues among physicians, scientists, and advocates here in San Antonio.

Back in October, the 16-member committee recommended that most women in their 40s should not routinely get mammograms. Additionally, women 50 to 74 should get mammograms every other year until they turn 75, after which the risks and benefits are unknown. Women 75 and older should not get regular screening. The committee is also against teaching women to do regular self exams because "the value of breast exams by doctors is unknown and breast self exams are of no value."

The American Association for Cancer Research (AACR) released a response to the new guidelines which stated that they recognize that these are complex issues that encompass a broad range of areas - medical, scientific, public health, economic and sociological - and that the interpretation of these data can result in legitimate disagreement among respected leaders in their fields. Decisions on the delivery of screening methods and treatment of cancer should be evidence based and that the "state of the art" in the field is evolving and will continue to change as our understanding of the biology and genetics of cancer is better understood. They also recognized that mortality rates from breast cancer have been falling since the mid-1990, and they believe that this is attributable at least in part to the more widespread utilization of mammography screening and other factors. Their statement concluded by saying that the issues are simply too complex to make a clear statement at this time supporting either the existing guidelines or those proposed by the USPTF.

To me, that response equates to issuing a "no comment."

The Breast Cancer Network of Strength took a much more definitive stance. Margaret Kirk, the foundation's President and CEO said, "We know that earlier diagnosis and treatment of breast cancer leads to better outcomes. As an organization that hears from tens of thousands of women through our 24/7 YourShoes support center, we would be disappointed if this new recommendation became yet another barrier that women will have to overcome to get the care they need."

Over 7,000 people have sounded off about the new mammogram guidelines by signing Breast Cancer Network of Strength's petition. You can too by clicking here.

I was 35 when I found my lump and had it confirmed via mammography and biopsy. It's important to note that my mammogram was considered diagnostic and would still be covered under the new recommendations. However, had I done the mammogram two months earlier, when my doctor recommended it at my annual check up, it wouldn't have been because the tumor hadn't been detected then. At 35, and with no family history, I felt invinsible. I procrastinated.

I salute Margaret Kirk and the Breast Cancer Network of Strength for keeping the public's voice at the forefront of this issue.

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Federal task force says women need fewer mammograms. Sound reasoning or rationing?

BY SUSAN MCCLURE | NOVEMBER 17, 2009

Bewilderment. That's the only word I can use to describe how I felt upon reading an article in my daily newspaper this morning (Yes, I still read the daily paper). The story reported on an influential federal task force's recommendation that women have fewer mammograms. "We're not saying that women shouldn't get screened. Screening saves lives," said Diana Petitti, vice chairman of the U.S. Preventive Services Task Force. "But we are recommending against routine screening. There are important and serious negatives or harms that need to be considered carefully." The recommendations of this committee would set the standards for preventative health care services under health care reform and would be used to determine which tests would be covered by insurance plans. These guidelines are for the general population, not for those at high risk of breast cancer.

The 16-member committee recommended that most women in their 40s should not routinely get mammograms. Additionally, women 50 to 74 should get mammograms every other year until they turn 75, after which the risks and benefits are unknown. Women 75 and older should not get regular screening. The committee is also against teaching women to do regular self exams because "the value of breast exams by doctors is unknown and breast self exams are of no value."

Those who side with the task force's findings say that more testing, exams, and treatment are not always beneficial and may cause harm to patients. The article stated that in about 10 percent of cases, false positive results caused anxiety among patients and lead to unnecessary procedures such as disfiguring biopsies and in some cases, surgery, chemotherapy, and radiation.

Those on the opposing side said that this is a huge step in the wrong direction. Daniel Kopans, a radiology professor at Harvard Medical School said, "Tens of thousands of lives are being saved by mammography screening, and these idiots want to do away with it." Dr. Phil Evans, director of the Center for Breast Care at UT Southwestern Medical Center in Dallas predicted that conducting fewer mammograms would be a mistake. "Mammography is not a perfect test, but it's still the best test for finding breast cancer early," argued Evans.

The most ominous quote in the article came from Dr. Michael Grant, my breast surgeon at Baylor University Medical Center at Dallas. He said that the timing of this made him suspicious. "Ultimately, this may be how we provide rationale for rationing. They're not saying it isn't worth it -- just that the number of lives it saves is not counter balanced by the cost and trouble of doing it," said Grant. Roughly 39 million women in the U.S. have mammograms each year, costing the healthcare system more than $5 billion annually.

I think I need to dust off my old copy of George Orwell's, Animal Farm. This arguement is sounding vaguely familiar. "All animals are equal-- just some are more equal than others."

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Finally, good news for triple negative breast cancer patients!

BY SUSAN MCCLURE | JUNE 9, 2009

During ASCO's annual meeting this year, I was thrilled to learn that a new drug class is offering promise to patients with triple negative breast cancer. PARP inhibitors--experimental targeted therapy medicines, may make chemotherapy work better against aggressive forms of breast cancer (see Debu Tripathy's blog for the details). For years, I've been happy to see great advancements in the treatment of breast cancer, but have selfishly been concerned that no real progress was being made to better understand triple-negative cancers.

When I was diagnosed with breast cancer back in 1994, the term "triple-negative" breast cancer didn't exist. Diagnostic tests weren't as sophisticated as they are today. I did know that I was estrogen receptor-negative and that while my cancer was aggressive, it hadn't spread to my lymph nodes. I had surgery, chemotherapy, and radiation. Within six months my treatment was over, and I was told to get on with my life. Six months of treatment and I was done. So why were some of my friends, also estrogen receptor-negative, not so fortunate?

It was years later, during a routine check up with my oncologist that I asked him to review my pathology report to see if he thought that I might have fallen into the triple-negative camp. After close examination, he shrugged his shoulders and said that, most likely, I did. To be sure, they'd have to go down to the basement of Baylor, find my 12-year-old tumor, and run it through the gauntlet of diagnostic tests now available to determine such things. Eeek.

I've been cancer free for twelve years. I've lived with never really knowing what caused my cancer. I've lived with the fear that it might return--as we all do. I've lost friends with triple-negative breast cancer who ran out of treatment options far before they ran out of hope. For me, this new development honors their memory.

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Mom and teen home, but debate rages on...

BY SUSAN MCCLURE | MAY 29, 2009

I'm sure many of you have been following the plight of Daniel Hauser, the 13-year-old Minnesota boy who scrambled to the Mexico border with his mom in order to avoid undergoing court ordered chemotherapy. For those of you who haven't, let me catch you up. In January Daniel was diagnosed with Hodgkin's Lymphoma-- what experts are calling "a highly curable disease". He had one round of chemotherapy before his parents told doctors that he wasn't going to have any further treatment. The first treatment resulted in a reduction of cancer, but because Daniel hasn't had another treatment since, his cancer has returned to pre-treatment levels. The doctors were very concerned. So concerned in fact, they turned the matter over to the courts. They said Daniel has a good chance of achieving a complete remission if he resumes treatment. They felt that Daniel's life was in jeopardy and that his parents weren't acting in his best interest. Knowing that the courts were likely to force Daniel into chemotherapy, he and his mom fled town. Well, they're home now, less than a week since their life on the run began. Daniel's parents have told the judge that they will abide by whatever ruling is made--even if that means undergoing more chemotherapy.

But why did the Hausers decide against such a proven treatment plan in the first place? Like most issues related to cancer, it's complicated. The family is Roman Catholic, but they belong to a group called the Nemenhah Band, which promotes a "Do no harm" philosophy. They believe in natural healing methods advocated by some American Indians as an alternative to traditional treatment. In fact, Daniel and his mother believe that the treatment for his cancer is what will end up killing him-- not the cancer itself. They were seeking "less toxic" options to treat his cancer.

That decision resulted in a heated national debate surrounding the government's right to intervene in cases such as this. According to a recent MSNBC poll in which participants were asked if parents should be allowed to refuse cancer treatments for their sick children, public opinion was split. Of the 77,276 people who responded as of May 28th, 55% said "Yes, families should be allowed to make their own decisions in every aspect of medical care", and 45% said "No, refusing care that could save someone's life is a form of medical neglect". Many who answered "yes" said that while they did believe that the parents were putting the child at risk, this is America and we have a little document called The Bill of Rights that protect people in cases such as this. Those who answered "no" said that this was just another form of child abuse and that refusing to render medical aid to a sick child is unjustifiable.

I was thinking about my own cancer treatment and wondered how I would feel if someone told me that I had no right to refuse a particular therapy. Granted, I was 35 when I was diagnosed--not 13. What do you think? I'm looking forward to your comments.

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