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Tag: Cancer

Did Angelina Do the Wrong Thing?

A woman’s mother dies at age 56. A blood test is done. The woman finds out she has a genetic pre-disposition to cancer. She takes what action she thinks she needs to take. A familiar story repeated over and over again every day. I’ve met many women who have made this choice. While not “normal”, it is a familiar situation. These women’s difficult choices go unheralded. But not Angelina. She has a voice and she’s not afraid to use it.

I am of two minds about Ms. Jolie’s announcement. Unlike double mastectomies for ductal carcinoma in situ (DCIS), which isn’t necessarily a cancer and can be treated with a lumpectomy, BRCA1 gene mutations can’t be treated any other way. Unless I hear differently from my breast surgeon friends, I’d say she probably did the right thing. Her decision to talk about it is probably encouraging to women who have or will have to make that choice. It raises awareness of the gene mutation. It puts breast cancer on the front page of the New York Times. Again.

Here’s my problem: double mastectomy is not a benign procedure. Ms. Jolie seems to have had a remarkably easy time of it. Yes, she says she was right back to her normal life soon after, but since Jolie’s life is not normal that’s hard to generalize. The truth is there is significant pain involved, a long period of waiting while the tissue expanders do their work, then there’s further procedures for the implants, which can develop capsules around them, or rupture, or get infected. If Angelina had chosen breast reconstructive surgery there would be the risk of the flap losing blood flow, multiple drains, overnight stays in recovery rooms or ICUs, and many many surgeries for revision, nipple creation, etc. And the results are not always beautiful. I understand that it is not Ms. Jolie’s role to scare people, but to encourage them. I would just warn against falsely rosy expectations.

I am not trying to discourage double mastectomy. Sometimes it is necessary. I do think that people who have extraordinary access to public attention must pay extraordinary attention to what they say. I wish Angelina all the best for a complete, and beautiful, recovery.

Shirie Leng, MD is a practicing anesthesiologist at Beth Israel Deaconess Medical Center in Boston. She blogs regularly at medicine for real.

Caution: Wellness Programs May Be Hazardous to Your Health

The exponential growth in wellness programs indicates that Corporate America believes that medicalizing the workplace, through paying employees to participate in health risk assessments (“HRAs”) and biometric screens, will reduce healthcare spending.

It won’t. As shown in my book Why Nobody Believes the Numbers and subsequent analyses, the publicly reported outcomes data of these programs are made up—often to a laughable degree, starting with the fictional Safeway wellness success story that inspired the original Affordable Care Act wellness emphasis.  None of this should be a surprise:  in addition to HRAs and blood draws, wellness programs urge employees to go to the doctor, even though most preventive care costs more than it saves.  So workplace medicalization saves no money – indeed, it probably increases direct costs with these extra doctor visits – but all this medicalization at least should make a company’s workforce healthier.

Except when it doesn’t — and harms employees instead, which happens altogether too often.

Yes, you read that right.  While some health risk assessments just nag/remind employees to do the obvious — quit smoking, exercise more, avoid junk food and buckle their seat belts — many other HRAs and screens, from well-known vendors, provide blatantly incorrect advice that can potentially cause serious harm if followed.

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Driving Front Line Innovation In Health Care

Jennifer Stinson was a nurse at The Hospital for Sick Children (SickKids) in Toronto who enjoyed brainstorming new ideas for improving care, especially for the kids with cancer she treats. But even as she gained status by getting her PhD and becoming a clinician scientist, she came up against persistent bureaucratic and organizational barriers to innovation.

Stinson’s challenge is common at big organizations, but overcoming bureaucracy and breaking down silos is especially critical in healthcare. To tackle these obstacles at SickKids, CEO Mary Jo Haddad in 2010 elevated innovation to a “strategic direction,” and engaged Innosight to help devise a full system needed to spur innovation. The resulting system has three major components:

  1. An Innovation blueprint detailing the types of innovations the organization wants to encourage. SickKids prioritized encouraging doctors, nurses and clinicians to look for unmet needs they could address, rather than wait for solutions from IT or top management. That required creating a focus group with 25 front-line healthcare workers to discover and catalog key “jobs to be done” (like reducing the length of hospital visits), surveying all 5,000 employees, and training most of them on how to integrate the innovation system into their daily practices.
  2. An innovation pipeline to reliably take ideas from concept to reality. This involved establishing a new 18-member Central Innovation Group of leaders from different areas of the hospital, a team that was tasked with prioritizing and advancing ideas and projects through various stages. The team helped innovators test prototypes, make adjustments, and then scale to a wider population.
  3. An innovation culture that features the right people, in the right roles, speaking a common language of innovation. A key enabler of this culture was the establishment of a $250,000 Innovation Fund to provide seed money for promising ideas. Now, instead of being stalled by permission hurdles that suppress initiative, promising new ideas could be funded, fast-tracked and prototyped.

Consider how the new system helped Stinson bring a transformative innovation to life. Every year at SickKids, thousands of children are battling various forms of cancer. It’s vital that they keep accurate diaries tracking their pain, but if it’s not done daily the data are virtually worthless. Typically these diaries must be filled out by hand, an annoying task that children with cancer aren’t motivated to do. The result is poor reporting and suboptimal pain management.

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How a Real Writer Dies

True to his proudly claimed Chicago newspaperman roots, famed movie critic Roger Ebert remained a writer literally up until the moment he died.

“A lot of people have asked me how could Roger have [posted] that column one day and then die the next? Well, he didn’t know he was going to die the next day, and we didn’t expect him to. We expected him to have more time. We were going to go to home hospice. We thought we would take him home, let him enjoy that time, and let him get stabilized. I’ve got to tell you: I really thought he was just tired and that he was going to get better.”

“I want people to know that Roger was still vibrant right up to the end,” his wife, Chaz, told Ebert’s friend, TimeOut Chicago columnist Robert Feder, before an April 7 memorial service. “He was lucid – completely lucid – writing notes right up to before the moment of death,” she said. Only later did it occur to Chaz that Roger had begun signing his initials and dating many of the notes he wrote at the end. “Now I wish I had saved them all,” she said.

It was as if a man who had refused for years to be defined by illness refused to be defined even by death. Ebert spoke openly of being a recovering alcoholic (he stopped drinking in 1979), and when cancer cost him part of his lower jaw in 2006, cruelly taking away his ability to either talk or eat, he did not hide, wrote colleague Neil Steinberg in the Sun-Times, Ebert’s home newspaper. Instead, he forged “what became a new chapter in his career, an extraordinary chronicle of his devastating illness” written “with characteristic courage, candor and wit, a view that was never tinged with bitterness or self-pity.”

Ebert, wrote Roger Simon in tribute, was “a newspaperman’s newspaperman.” As a former Chicago newspaperman myself (at that other paper, across the street), I’m sure Roger Ebert continued to write even after his death.

It’s just that he hasn’t found a way, yet, to send out his copy.

As a long-time reporter for the Chicago Tribune, Michael L. Millenson learned the famous fact-checking fanaticism credo of Chicago journalism: “If your mother says she loves you, check it out.” He is currently president of Health Quality Advisors LLC of Highland Park, IL.

Truth At the End of Life

Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

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Choosing Alternative Medicine

After a terribly painful and debilitating illness, Steve died.  He had been treated for Stage 2 Hodgkin’s Disease with a series of intense therapies including German enzymes, American antineoplastins, Mexican naturopathy and Chinese Herbs, complemented by focused meditation, innumerable vitamins, extreme diet modification and acupuncture for severe pain.  He fought the cancer with every ounce of his being, doing everything to survive, except the one thing that had an 85% chance of cure; chemotherapy.

I was struck this week by a comment on my website, which bemoaned the highly disorganized state of “alternative medicine” in this Country and in particular the “paltry sums” for alternative research funding by the National Institutes of Health (NIH). The writer suggested that not only could the quality of health be improved with alternative medicine studies, but would go a long way towards saving health care dollars.

It seems to me that the idea that we need more Complementary and Alternative Medicine (CAM) research goes right to the core of the confusion between so called “conventional medicine” and CAM.  There is a major difference between the medicine practiced by board certified, classically trained physicians and that of alternative practitioners.  That difference is research and data.

If an MD or DO is treating a cancer patient and that patient asks to see or understand the basic science and clinical studies which support the recommended therapy, that published data is readily available. Standard oncology treatment goes through 10-20 years of research, from the test tube, animal studies and through a series of supervised human multi-phase trials, until it is approved and offered to patients. Each step is refereed by competing and critical PhD and physician scientists and must be published in peer-edited journals for general review and criticism, all of which is public and transparent. Where it is not, and when people attempt to manipulate or falsify the system or data, massive blowback eventually occurs.

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Replacing Lance

We need heroes.  Heroes show us light in the darkness, the way to the miraculous and ignite a fire in our soul to survive.  They prove what is truly possible, through the fog of the impossible.  We mourn the disgrace of Lance Armstrong because he seems to have achieved Pyrrhic victory.  Let us not doubt; whatever his frailty as a man, Armstrong vanquished a terrible foe; moreover the path blazed is not bare, for everywhere are cancer heroes.

The 45 year old RN raising her children while she works full time in a pediatric intensive care unit, celebrates her eighth year in remission from pancreatic cancer, treated with surgery, chemotherapy and radiation.

The grandmother who ignored a breast mass for two years so she could care for four disabled grandchildren, and when the tumor grew to be massive, continues to take care of the children while receiving chemotherapy.

The hospital chaplain who has suffered from cancer, sits at the bedside holding a hand, sharing a smile, saying a prayer that is heard deep in the heart and to the heavens above.

The 71 year old with four different cancers, treated with a bewildering mix of surgery, radiation and chemotherapy, whose primary worry is the cardiac care of her husband.

The 64 year old rescue squad volunteer while receiving chemotherapy and radiation for extensive lung cancer, assists 150 people to flee from their homes and escape the wrath of Sandy.

The national lymphoma expert, who could be wealthy in his own clinic, instead devotes his life to teaching and research, believing he can save more lives by consulting and advising oncologists in communities around the country.

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About Time? Smokers Face Tough New Rules Under Obamacare

The Affordable Care Act contains a number of provisions intended to incent “personal responsibility,” or the notion that health care isn’t just a right — it’s an obligation. None of these measures is more prominent than the law’s individual mandate, designed to ensure that every American obtains health coverage or pays a fine for choosing to go uninsured.

But one provision that’s gotten much less attention — until recently — relates to smoking; specifically, the ACA allows payers to treat tobacco users very differently by opening the door to much higher premiums for this population.

That measure has some health policy analysts cheering, suggesting that higher premiums are necessary to raise revenue for the law and (hopefully) deter smokers’ bad habits. But other observers have warned that the ACA takes a heavy-handed stick to smokers who may be unhappily addicted to tobacco, rather than enticing them with a carrot to quit.

Under proposed rules, HHS would allow insurers to charge a smoker seeking health coverage in the individual market as much as 50% more in premiums than a non-smoker.

That difference in premiums may rapidly add up for smokers, given the expectation that Obamacare’s new medical-loss ratios already will lead to major cost hikes in the individual market. “For many people, in the years after the law, premiums aren’t just going to [go] up a little,” Peter Suderman predicts at Reason. “They’re going to rise a lot.”

Meanwhile, Ann Marie Marciarille, a law professor at the University of Missouri-Kansas City, adds that insurers have “considerable flexibility” in how to set up a potential surcharge for tobacco use. For example, insurers could apply a high surcharge for tobacco use in older smokers — perhaps several hundred dollars per month — further hitting a population that tends to be poorer.

Is this cost-shifting fair? The average American tends to think so.

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Heroes and Villains

“Lance Armstrong is a bad guy who has done some very good things.”

These are the words of a sports radio personality I listened to yesterday. He was obviously commenting on the confession (to my pal Oprah) by Armstrong about his use of performance enhancing drugs. The sportscaster, along with many I heard talk on the subject, were not as upset by the fact that Armstrong used the banned substances, or his lies on the subject, but the way he went after anyone who accused him of what turned out to be the truth. Armstrong used his position of fame and power, along with his significant wealth, to attack the credibility of people in both the media and in the courtroom. The phrase, “he destroyed people’s lives” has been used frequently when describing his reaction to accusations.

It’s a horrible thing he did, and shows an incredibly self-centered man who thought the world should bend to his whim. It’s more proof to the adage: absolute power corrupts absolutely.

But simply dismissing Lance as a cad or a horrible person would be far easier if not for the other side of his life. In his public battle against cancer, he inspired many facing that disease to not give up their battle. Even for those who eventually lost, the encouragement many got from Armstrong’s story was significant. On top of that, the Livestrong foundation did much to raise money and awareness for cancer and for other significant health issues. This foundation exists because of the heroic story of Lance’s successful battle to beat cancer, as well as his subsequent cycling victories. Whatever the lies he told in the process, he did beat cancer and he did win the Tour de France multiple times.

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Advances In Cancer 2012

The 30,000 member American Society of Clinical Oncology is the world’s leading group of cancer physicians. ASCO is dedicated to curing cancer, supporting research, quality care, reducing treatment disparities and a heightened national focus on value. This month they released their annual Report on Progress Against Cancer, which highlights research, drug development and cancer care innovations.  This hundred-page document is important reading for anyone who wants to be up-to-date regarding cancer care.

Cancer related deaths in the United States are dropping, but still totaled 577,000 in 2012.  While world cancer research funding is rising, in the USA it continues to decrease, with the purchasing power of the largest funding source, the National Cancer Institute, having fallen 20% in the last decade, and a further 8% cut slated for January 1, 2013.   Development is dependent on government and private funding, as well as the willingness of more than 25,000 patients a year who volunteer to be involved in cancer trials.  All these critical supports are threatened. The Federal Clinical Trials Cooperative of the National Cancer Institute (FCLC, NCI) supports research at 3100 institutions in the USA.

The report discusses the many types of cancer which continue to be naturally resistant to cancer treatment, particularly chemotherapy.  In some cases, drugs do not penetrate a part of the body, such as the brain, in other cases even when they reach the tumor, they are not effective.  In such cancers the genetic code of the cancer cells has mutated (changed) such that the particular drug does not kill the cancer.  In 2012, there was increased interest in attacking each cancer cell at multiple targets either by using a single drug, which attacks in several different ways, or multiple drugs at the same time.  This concept improved cancer killing in GIST, colon cancer, certain lymphomas (ALCL) and medullary thyroid cancer.  In addition, unique targeted compounds, such as “tyrosine kinase inhibitors,” show increasing benefit in leukemia, sarcoma and breast cancer.

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