Confessions of a two-time survivor

BY SUSAN MCCLURE | DECEMBER 12, 2010

I have a confession to make.

While I've talked a great deal about my experience with breast cancer back in 1997, only close friends and family have been privy to the fact that I experienced a second diagnosis this year. I've often wondered why I was so comfortable talking about the first experience, but not the second. The first time was so different. So scary.

This time, I had DCIS (ductal carcinoma in situ), which was discovered during cosmetic surgery. I had decided that after 13 years of survivorship, I was tired of feeling lopsided. Surgery and radiation from my previous treatment left me a bit uneven, and I decided that I was going to do something for myself. I was going to "fix" something that only I really noticed or had a problem with. I was going to "even myself out."

The surgery went great. The very next day I could tell that I was going to be happy with the ultimate result. Well, actually, the very next day I was horrified by all of the incisions and tubes and condemned myself for voluntarily opting-in to cause such damage to a perfectly healthy body part. In fact, for a couple of weeks I referred to myself as "Frankenboob" and marveled at the notion that people called this "cosmetic" surgery.

In the midst of all of this self-criticizing, I got a call from my surgeon. It was Friday afternoon and I had just picked my son up from school.

"Susan, I'm afraid I have some bad news," my doc said. He went on to say that during the routine course of examining the tissue, the pathologist had discovered DCIS in my left--previously unaffected--breast.

I began asking very specific questions about next steps and assured the surgeon, who was very impressed by how well I was taking this news, that I knew a great deal about DCIS and that this in no way compared to my first bout.

"This is really baby cancer," I said. "This was nothing to freak out about." I hung up and glanced over at my 15-year-old son. He was crying.

How could this happen to us again? The first time was a fluke, right? She's been healthy for 13 years! Why now? All of these thoughts were whirling through his mind. I could see panic in his eyes and rushed to reassure him that this time in no way resembled the last. I told him that DCIS is the earliest stage of breast cancer and that many women have had it and it almost never progresses...meaning it just sits there, causing no harm.

In the months that followed, many tests were ordered, including an MRI, a biopsy, then a last-second canceled biopsy and a mammogram. I hade to wait for a couple of months for my breast to heal before further tests could be done. During that time, everyone privately worried.

When tests were finally ordered, a suspicious shadow presented itself, causing more worry and more tests. When the suspicious shadow disappeared and the biopsy was canceled, everyone rejoiced. The rollercoaster of emotion that my entire family endured from June through October was palpable.

The ups and downs, twists and turns in the diagnostic process this time were far more difficult than my first experience. The first experience was cut and dry. My health care team said, "You have an aggressive cancer. We need to remove it and will follow the surgery with chemo and radiation." This time I was told that I had three options, none holding greater promise or survival benefit than the next. I was told that I wasn't going to die from this and therefore, the options were broad, and I was the only one who could determine the best treatment option for me. I could remove my breasts, I could radiate the affected breast (not ideal because I remove that option should cancer present itself again) or I could watch and wait.

Guess which I chose? I am now being followed very closely by my health care team with frequent screenings.

What lesson can be learned from all of this? There's no such thing as "baby" cancer. A second diagnosis, no matter how early the stage, is just as emotionally draining as the first one. Maybe that's why it's so hard to talk about.

• Dating Teleconference Today
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• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation

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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• Where are we in breast cancer research?
• Another SABCS comes to a close
• Why is the San Antonio Breast Cancer Symposium so unique and special?
• A disquieting moment: Two steps backwards?

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!

• More trail mix
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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.

• More trail mix
• When the cancer comes back
• Two new drugs approved, one pulled from the pipeline
• Emerging treatment option for myeloma presented at hematology meeting
• The big news from the American Society of Hematology

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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Sympathy for the masses

BY SUSAN MCCLURE | MARCH 4, 2010

I was wandering down the aisle of my local drugstore, looking for a wrist brace for my terribly clumsy 15-year-old, when I happened upon something that stopped me in my tracks. There, in a bargain bin in the middle of the aisle, was an assortment of boxed greeting cards. Mixed among the "happy birthday" and "thinking of you" cards were a stack of boxed "sympathy" cards for $1.99. That's right, for only $1.99, you can be prepared for the death of a friend or loved one by having an assortment of cards at the ready for just such an occasion. But wait! Why not throw in a box of "get well soon" cards so you're covered just in case your friend pulls through? A set of two costs only $3.00!

I picked up the box of cards, examining the back to see the various sentiments contained therein, but there was no description. But hey, when shopping for bargain sympathy cards maybe the sentiment isn't that important. I opened the box with a card that carried a message stating, "I'm here if you need me." I think it should have said, "I'm here if it doesn't take too long or inconveniences me in any way."

Doesn't someone's death warrant just a little personal attention? Unless you're a pastor or have lots of relatives in Haiti, the boxed sympathy card idea just shouldn't be condoned. I've lost too many friends and loved ones to this disease since my diagnosis in 1997. Each loss was painful and personal. None warranted a generic card. We can't be this busy and overwhelmed as a society... can we?

• Learning to be a caregiver
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Gilda's Club and The Wellness Community Join Forces

BY SUSAN MCCLURE | DECEMBER 14, 2009

The Wellness Community and Gilda's Club Worldwide have officially united and unveiled their new, combined identity--the Cancer Support Community. The Cancer Support Community will likely be the largest professionally-led network of cancer support worldwide. This is great news for cancer patients across the U.S. because it will expand the footprint of both organizations, thereby bringing more services to more communities. The new organization includes a network of nearly 50 local Gilda's Clubs and Wellness Community centers worldwide, more than 100 satellite locations and online support services that extend around the world.

"Our common history and commitment to the cancer community is what brought us together," said Kim Thiboldeaux, president and CEO of the Cancer Support Community. "This union creates a strong, vital, global network that will bring the highest quality cancer support to the millions of people touched by cancer."

These offerings include a comprehensive menu of personalized and essential services, including support groups, counseling, education and healthy lifestyle programs. Additionally, the organization is working to expand its vital services to meet the urgent needs of cancer patients and their loved ones. To ensure no one has to face cancer alone, these support services will soon be available to people in all 50 U.S. states and internationally through the Cancer Support Community's network of community-based centers, and at hospitals, community oncology practices and other non-profits, as well as online. The Cancer Support Community is also exploring the use of novel technologies, including mobile, to help extend the reach of these meaningful resources.

I have had the privilege of visiting the Gilda's Club in Dallas several times and am impressed by the variety of support services available to patients and their families. This new union will make those services even more spectacular.

I only have one problem with all of this... the new name. The Cancer Support Community? Really? Gilda's Club and The Wellness Community are such well-known brands in the cancer world. The new name doesn't play off either of them. It's like Coca-Cola and Pepsi joining forces to become Bubble Water. Can't we do better? My colleague, Jeremy Heath recommends changing the name to Wilda's Community. Hmmmm.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey

Endocrine therapy passion gives three researchers rock star status

BY SUSAN MCCLURE | DECEMBER 10, 2009

This afternoon I attended a general session at SABCS where Susan G. Komen for the Cure awarded the Brinker Awards for Scientific Distinction to three researchers for their work in endocrine therapy. Huh? Ok, first, let me give you a definition of what endocrine therapy is. According the the National Cancer Institute, endocrine therapy is:

Treatment that adds, blocks, or removes hormones. For certain conditions (such as diabetes or menopause), hormones are given to adjust low hormone levels. To slow or stop the growth of certain cancers (such as prostate and breast cancer), synthetic hormones or other drugs may be given to block the body's natural hormones. Sometimes surgery is needed to remove the gland that makes a certain hormone. Also called hormonal therapy, hormone therapy, and hormone treatment.

The awards went to Geoffrey L. Greene, PHD of the University of Chicago, Benita Katzenellenbogen, PHD, University of Illinois-Urbana Champaign, and Professor Ian Smith of the Royal Marsden Hospital of London. In a nutshell, their combined resarch revolves around understanding estrogen receptors and how we can provoke them respond to treatment.

I'm no scientist, and I promise to stick to "color commentary" from this point forward, but what I can tell you is these guys are heavy hitters. They have not only changed the way cancer is dianosed and treated, but also how outcomes can be predicted.

In a packed hall with hundreds of docs hanging on every word, each researcher told the audience about their work in endocrine therapy. Dr. Greene's research determined that receptors exist. Dr. Katzenellenbogen's reseach focused on how receptors respond to various hormones. Dr. Smith's research involved early clinical development of anti-cancer drugs based on this research.

One of the first questions doctors want to know when assessing treatment options for their patients is whether the tumor is ER positive or negative. The answer will determine which treatment pathway to follow. This reasearch will also help doctors determine which patients will (and won't) respond to chemotherapy. More on that tomorrow.

The cure to cancer is complicated, but tonight's award-winners have helped us better understand this deadly disease by finding ways to trick hormones into working with us instead of against us.

• More trail mix
• When the cancer comes back
• Two new drugs approved, one pulled from the pipeline
• Emerging treatment option for myeloma presented at hematology meeting
• The big news from the American Society of Hematology

The 32nd annual San Antonio Breast Cancer Symposium gets under way

BY SUSAN MCCLURE | DECEMBER 9, 2009

On November 11, 1978, a group of 141 physicians and surgeons from a five state area got together during Breast Cancer Awareness Week to discuss ways to reduce the death rate caused by breast cancer in San Antonio and surrounding counties.

Fast forward 31 years.

This year's symposium will host an estimated 8,500 participants from more than 90 countries and instead of gathering for a single day, attendees will stay for five. What began as a novel idea has gained unfathomable momentum. 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 here.

Follow us on facebook and twitter too!

• Two new drugs approved, one pulled from the pipeline
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• An introduction to cancer: From a father and his daughter
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Cancer's silver lining... Free housecleaning!

BY SUSAN MCCLURE | NOVEMBER 19, 2009

If you know a woman currently undergoing chemotherapy, tell her that there is a cleaning service that provides FREE housecleaning once per month for four months while she's in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her area arrange for the service. Click here to to learn more http://www.cleaningforareason.org/ This organization serves the entire Country and has 547 partners to help take the tough work of housecleaning off of women in need. So spread the word and let them know that there are people out there that care-- and clean!

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence