When I set out to write I wanted to raise questions about activism and social media around disease. I did not mean to imply that I or the American Cancer Society believe that sick children are not important. Indeed I wrote that each of these cases is tragic, and that the children and their families deserve both sympathy and support. That is what I believe.

I am committed to repairing the relationship between the advocates I have upset and the American Cancer Society. The idea that my words would cause people to lose faith in the good work of the Society is horrifying to me. The Society succeeds because of our more than three million volunteers, and because of millions of others who generously support our work. In my more than four years working at ACS I have seen one example after another of this organization’s incredible mission being carried out, and each time, I am inspired. I have also seen success that extends to all of us, as cancer incidence and death rates continue to drop. I hope I have not jeopardized the good will that makes this progress possible.

Andrew Becker

But here was the study’s kicker: researchers also found paraben compounds in the seven women who said they’d never used underarm products, leading a study co-author to say in the journal press release:

“Our study appears to confirm the view that there is no simple cause and effect relationship between parabens in underarm products and breast cancer”

Media outlets seemed understandably perplexed about what to conclude. While many seemed to issue a sigh of relief, others were more skeptical. Time Healthland blogger Laura Blue mischievously said the study “may help to alleviate concerns about underarm products further — or rekindle the worry.”

Why the caution in sending out the “all clear?” The study was not designed to answer the question definitively, so it couldn’t make that conclusion.  Here’s what Michael J. Thun, vice president emeritus of the ACS’s Epidemiology and Surveillance Research department told us.

“I think that the press release misinterprets the point of the study. Its purpose was not to study whether parabens (in general) or underarm deodorants (in particular) affect breast cancer risk. Rather, it examined the levels and anatomic distribution of various paraben compounds in the excised breasts of 40 women with breast cancer. At least one form of parabens was detected in all except two of the 160 samples tested, with at least one sample testing positive in all women. This result could not be compared to breast tissue from women without breast cancer, however, since they don’t have mastectomies.

“The first author acknowledges that the study does not show an association between parabens and breast cancer risk in his quote, ‘The fact that parabens were detected in the majority of the breast tissue samples cannot be taken to imply that they actually caused breast cancer in the 40 women studied.’

“Rather, the study merely confirms earlier, smaller studies which detected parabens in breast tissue of women with cancer. It shows that parabens can be absorbed (probably from personal care products) and the underarm deodorant is not the only source.”

Virtually every media outlet pointed out that the most important lesson from the study was that the high rate of the presence of parabens justifies further investigation.

You can read more about the issue on our website.

We asked Tom Glynn, Ph.D. director of science and trends, what he thought the study tells us.

“I’m not surprised at the results of this study, because evidence is accumulating that smokers who use NRT do not often use it as directed, nor do they use it long enough to stave off relapse, suggesting that we need to better educate NRT users and the physicians and pharmacists who recommend it.

“We also need to consider recent evidence that shows that NRT for many people is more effective when used longer than the 12 weeks currently on the package inserts, and convince the FDA to modify its current recommendation so that it will  be maximally effective.

“I’m a bit more surprised at the authors’ conclusion (although it’s an argument that has been around for years) that ‘…increasing individual treatment coverage should not be at the expense of population evidence-based programs and policies.’

“The tobacco control field needs to stop acting as if it is involved in a zero-sum game and instead advocate for comprehensive tobacco control approaches that include BOTH individual and population based approaches. In other words, we need to make support available to help smokers quit and work to change the environment around them to make relapsing (or starting smoking) harder.

“The data are very clear that this is what works and that it is cost-effective. Our advocacy activities should reflect that and not pit one approach against another.”

“We are making progress in the fight against cancer. The American Cancer Society said Wednesday that death rates are going down. Between 2004 and 2008, they dropped 1.8 percent each year for men and 1.6 percent for women. However, CBS News medical correspondent Dr. Jon LaPook reports there has not been much improvement for teens or young adults….

“Adolescents and young adults aged 15-to-39 account for more than 72,000 new cancers every year — seven times more than pediatric cancers. Unlike other groups, their mortality rates have not improved.”

It is true that young adult cancers have been cancer medicine’s forgotten population, as outlined in an excellent article in our journal, CA: A Cancer Journal for Clinicians by Archie Bleyer back in 2007.

But the claim that mortality rates have not improved is perplexing.

Our epidemiologists heard the CBS report and ran the numbers. Here’s a chart.

The data show despite the challenges facing this population, the overall cancer death rate among people 15 to 39 has decreased by over 50% since 1969.

I asked CBS about the statement, and it turns out what CBS meant to say was that survival rates had not improved.

So what do survival data show? While it is true the improvement in 5-year survival rates over time has been the lowest for ages 15-39 years, 5-year survival in 2001-2007 (81.5%) is similar to that among children (80.4%) and is 17.4% higher than those ages 40 and up (64.1%). It turns out, and this was news to me, that the survival rate in 1977 was already relatively high: 71.1% in adolescents and young adults compared to 58.1% in children and 47.4% in those 40 and older in that same time period. So it had less room to grow.

But using  survival rates is not the best way to measure progress anyway. They can be affected by factors, like increased screening rates, that do not reflect true improvements. In fact mortality rates, a person’s chances of dying of cancer (which we assume is what CBS thought it was reporting) remain the gold standard in marking progress. And death rates, as we saw above, are dropping in young adults.

The unique difficulties facing young adults with cancer is a real issue that demands our attention. The problem is dramatic and serious. It doesn’t require exaggeration.

They arrived in Tanzania yesterday, and begin their ascent tomorrow. The group also includes a couple of my American Cancer Society staff colleagues. They are expected to reach the summit on January 11.

In addition to his long volunteer service to the American Cancer Society, Dr. Deming is the founder of Above + Beyond Cancer , which helps cancer survivors find personal growth and adventure far beyond their cancer experiences. Follow their journey on the Road to More Birthdays Blog.

The new methods bring the ACS’s process into line with new principles from the Institutes of Medicine (IOM) by creating a single generalist group for writing the guidelines, commissioning systematic evidence reviews, and clearly articulating the benefits, limitations, and harms associated with cancer screening tests. The new process is outlined in a Special Communication in the December 14, 2011 issue of the Journal of the American Medical Association.

The new process stresses transparency: ongoing activities and timelines will be posted publicly on the American Cancer Society web site; the process will separate expert input from the writing of the guideline by having an independent writing group be responsible for the guidelines after receiving appropriate input from specialists in the relevant field. These will help protect the process from the appearance of professional conflict of interest.

The process will incorporate a systematic evidence review that will use methods consistent with IOM standards, and the guidelines group will grade the strength of its recommendations. The guidelines will explicitly describe potential benefits and harms of screening and will articulate any differences between its recommendations and those of other groups and the reasons for those differences.

The new process will conclude with a formal review that will include opportunities for experts and professional organizations to comment on draft guidelines.  Finally, the guideline process itself will be reviewed periodically by an independent advisory group to assure clarity, utility, and influence of the guidelines. There will be a formal review and rewriting of every ACS cancer screening guideline at least every five years.

We asked Chief Medical Officer Otis W. Brawley, M.D., who with Tim Byers, M.D., MPH, of the Colorado School of Public Health spearheaded the effort, to tell us more.

“The ACS process over the past thirty years has been one of the most respected and highly quoted in the world. But it was largely a process that gathered the opinion of experts. As science progresses and more and more knowledge is generated, there is more data to review and a critical need to separate out opinion from evidence. Our process needs to evolve with the times. We need an 21st century process for 21st century data.

“In 1990 or even in 2005, there might have been one or two critical trials that our experts would review to come to consensus and create a guideline. Today there is far more data and there are many subsets and other analyses to consider, all of which require a careful process.

“We can now begin to identify new sub-populations defined by molecular subsets who might benefit from screening. The new process will explore these possibilities, and will also rely on more advanced ways of handling large amounts of information.

“This change is about being respectful to changing science. We must assure the American public that they can rely on our organization to continue to provide them with honest, credible recommendations on which to make important screening decisions.

“Critical to this update is the extensive literature review that is now a formal part of the process, as is the fact that our guidelines group members are chosen as individuals with broad knowledge, and will not be sub-specialists who often appear to have a conflict of interest, intellectual or financial.

“I believe that people will look at this enhanced process and agree that it is evolving in the right direction, and that the recommendations we’ve created for many years will be even more trustworthy and provide reliable guidance to insurance providers, to government, to physicians, and to the public.”

The story was then picked up by reporter Craig Malisow at the Houston Press, who minced no words in telling the story.

This turn of events prompts a larger question about the challenge we in health communications often face: how do you help people understand what to believe in a world filled with conflicting claims? We turned to Ted Gansler, M.D., the American Cancer Society’s director of medical content and editor of one of our peer-review journals, CA: A Cancer Journal for Clinicians for comment. Ted has spent years working to find ways to educate people facing cancer, with these sorts of claims being an area of particular interest.

“We can explain the facts, as we do on our website and in our book about Complementary and Alternative Methods (CAM), but there is a substantial segment of the population who believe Burzynski is telling the truth and we are lying.

“In 2005, I co-authored a study about Americans’ beliefs in a host of cancer myths. We found more than one in four U.S. adults thinks there is a conspiracy to hide the cancer cure. Perhaps it should not be surprising, then, that some people facing a serious disease such as cancer can be misled by practitioners who promote their treatments as innovative, cutting-edge research, but who actually deliver care that is based on decades old hypotheses that still remain unproven and implausible.

“What’s hopeful about media coverage of the current story is that many journalists seem less afraid to portray the tactics that some supporters of Dr. Burzynski use to suppress rational public discussion of scientific evidence. Those one in four adults believing in a hidden cancer cure may not read information on cancer.org or on websites of other credible medical and scientific organizations, but they do pay attention to press accounts. Physicians, scientists, and journalists have an obligation to point out that such practitioners are not heroic geniuses. Practitioners who ignore or distort scientific evidence are, at best, extremely misguided and ignorant, and it is reasonable to wonder whether some are knowingly acting contrary to the best interests of their patients.

“Finally, although 25% of the general public thinks there is a hidden cancer cure, once people are diagnosed and start speaking with their doctors about treatment, extremely few reject mainstream evidence-based oncology to seek unproven treatments that practitioners claim are more effective than those offered in leading cancer centers.”

We asked Michael J. Thun, M.D., vice president emeritus of Epidemiology and Surveillance Research what he thought of the report.

Michael J. Thun, MD

“This is an important report that carefully reviews the evidence of how women can reduce their risk of breast cancer. The ‘environmental’ causes of breast cancer are defined broadly to include all factors not directly inherited on DNA. Some of the well established environmental risk factors are modifiable (for example excessive weight gain, physical inactivity, and use of menopausal hormone therapy). Others cannot practically be modified (for example reproductive factors such as age at menarche and age at first birth). The established modifiable risk factors identified in this report are consistent with those identified in Cancer Facts and Figures 2011. They include excessive adult weight gain, (for post-menopausal breast cancer), use of combined estrogen and progestin hormone therapy, physical inactivity, consumption of one or more alcoholic beverages per day and high doses of ionizing radiation (typically for cancer treatment) to the chest. There is accumulating evidence that active smoking in childhood and adolescence also increases breast cancer risk.

“The report also considers other exposures that are very much in the minds of the general public, but for which the evidence is more limited, contradictory or absent. These include exposures to chemicals such as benzene, ethylene oxide, 1,3- butadiene, and bisphenol A in industrial settings and consumer products, and to other factors such as shiftwork, active smoking and secondhand smoke. The report proposes research and chemical testing approaches to evaluate the potential risk from these exposures more effectively.

“The main contribution of the report is to characterize the strength of the scientific evidence regarding various proposed risk factors for breast cancer and to identify areas of uncertainty in which further research is needed.”

Len Lichtenfeld, M.D.

“These two studies demonstrate how our increasing understanding of the underlying mechanisms of cancer cells can be used to improve the treatments we can offer patients if their breast cancer returns.

“In the first clinical trial, called BOLERO-2, investigators used two established cancer drugs to increase the time it took metastatic breast cancer to progress. In that trial, women with recurrent breast cancer that was hormonally sensitive and who became resistant to hormone therapy and had failed prior treatment with hormone-blocking drugs were assigned to two groups. One group continued hormone-related treatment with a different hormone-blocking drug alone (exemestane) and another group received that same hormone-blocking drug along with a drug (everolimus) that effectively “turned off” the hormone resistance that led to the progressing disease in the first place. The results were significant, with the women receiving the drug combination having a much longer time to disease progression compared to the group that received the hormone-blocking drug alone.

“What is exciting about this trial is that the combination was based on laboratory and clinical evidence that this new approach might provide benefit for patients. Everolimus has not been considered a mainstay of breast cancer treatment previously, and research showed that it had the capacity to “reverse” hormone resistance. This study suggests that  researchers could indeed produce remarkable results by rationally designing a treatment approach based on science where the hormone resistance was turned off and allowed a different hormone therapy to effectively treat the disease.

“In the other trial—dubbed CLEOPATRA—a new drug (pertuzumab) designed to block the HER-2 pathway (which is found over-expressed in about 30% of breast cancers, and signals a more difficult prognosis) was added to more established chemotherapy with docetaxel and trastuzumab (a mainstay of treatment for women with HER-2 positive breast cancer which also blocks the same HER-2 pathway, but through a different mechanism) again found significant delays in disease progression with the addition of pertuzumab.

“In this study, adding the pertuzumab effectively improved the ability of the targeted therapy drugs (trastuzumab and pertuzumab) to block one of the pathways on which the breast cancer cells relied for their own survival. By understanding how cancer cells work, and which pathways we can target to block the cells’ growth, we can impact the lives of patients in ways never before possible. In this case, two drugs targeting the same pathway through different mechanisms significantly increased the time it took for the breast cancer to progress.

“Together, these studies show us that through our understanding of the basic biology of cancer, we are now able to target our treatments in novel ways that were not possible previously. These studies demonstrate—in different ways—that our understanding of the basic mechanisms of cancer cells and our ability to create new drugs and new combinations of drugs are moving us closer to an era when cancer will become a more chronic disease, with exciting new treatment options available for our patients and their doctors.”

I received a call from my doctor’s office the day after Thanksgiving telling me that a radiologist had seen something suspicious on my mammogram. I spent a week sweating it out before my follow up appointment. I worried about what I would tell my children. I was even reluctant to make plans over the holidays fearing that I would be in the hospital for Christmas.  I tried to clear my head by taking long walks; instead, I found myself using the time to write my own obituary.  Nothing was more chilling than sitting in the waiting room of the diagnostic breast imaging center with a dozen other women dressed in identical hospital gowns. I couldn’t help thinking we were playing a strange game of Russian roulette and some of us might receive news that would change our lives forever.

I’m happy to report that I am one of the lucky ones. I don’t have breast cancer. After five x-rays and an ultrasound, the doctor told me it was a false alarm and to come back next year.

Turns out, false alarms or false positives are fairly common among women who receive screening mammograms. As new American Cancer Society President Dr. Phil Evans points out in his Incoming President editorial, which appeared in our journal CA: A Cancer Journal for Clinicians, in the U.S., if 1,000 women get screened, 100 will get an abnormal result and will be called back for more testing. Of those, two-thirds, or 67, will be found to have nothing wrong right away, while nearly all of the rest will get the all-clear after additional testing, which often includes a biopsy. In the end, three to five of the original 1,000 women will be found to have breast cancer, while nearly 80 will have a false positive result.

Encouraging news, but what can be done about easing the anxiety that goes along with cancer screening and early detection? One solution is to arm yourself with information. I had the benefit of being able to walk down the hallway to quiz my colleague Dr. Otis Brawley, chief medical office of the Society. He was able to walk me through what to expect during the procedure and he reassured me that the odds where in my favor. I also spent some time on line reading up on mammography. You can find detailed information on our website. 

No doubt thousands of lives are saved every year because of early detection tests for breast cancer, but the reality is, screening isn’t perfect. In time maybe researchers and innovators will find a way to improve technology so fewer women like me will experience the scare of their lives.