CATEGORIES [ DIAGNOSIS, NEWS, BREAST CANCER ]

Score one for the Army of Women

BY ELIZABETH WHITTINGTON | MAY 11, 2011

You may have heard about a study released at the American Association for Cancer Research (AACR) annual meeting on how breast milk could one day be used to screen for breast cancer. What you may not know is how they found these unique participants.

The data presented at the AACR meeting found that epithelial cells in breast milk could help doctors predict breast cancer risk and screen for the disease. One hope, said researcher Kathleen F. Arcaro, PhD, is that by looking at the epigenetic information in these cells, and specifically certain genes, we could screen new mothers for breast cancer simply by examining the colostrum (first milk secreted after birth) -- a potentially inexpensive and noninvasive screening technique.

One interesting point about the study is where did they find their test subjects? You have to admit that the eligibility criteria were pretty unique. The study investigators called for women who either recently had a breast biopsy or were scheduled to have one in the near future and were breastfeeding. These weren't patients looking for a treatment option, and they weren't considered individuals who were at high-risk for breast cancer looking for ways to prevent the disease. They were just average women who want to help further cancer research.

In any other setting, the trial would never have gotten off the ground. With only about 3 to 5 percent of cancer patients involved in clinical trials and roughly a third of cancer clinical trials are halted due to poor enrollment, the fact that this study was able to secure about 250 breastfeeding women who had a breast biopsy (and some women later diagnosed with breast cancer) was certainly a feat.

If you're not familiar with the Army of Women (www.armyofwomen.org), it is a website sponsored by the Dr. Susan Love Research Foundation and the Avon Foundation for Women. It has a goal of recruiting one million women for clinical trials focused on finding the causes of breast cancer and how to prevent it. The website provides a way for researchers to reach out to women interested in participating in these trials. Women who are not currently undergoing breast cancer treatment can sign up on the website and are then notified by email of select clinical trials, allowing them to choose whether to enroll or not.

I heard Dr. Susan Love talk about this trial a couple of years ago at AACR when the study was just getting started. Love said they put the call out for women to join the study and had a great response, with women even offering to undergo a breast biopsy just to join the clinical trial. And once the researcher discovered she had easily reached her goal of 250 participants (which was first believed to be unrealistic), she asked for more.

The trial is still ongoing and enrolling additional women. Here is the information from the website:

The Milk Study: Using Breast Milk to Screen for Breast Cancer and Assess Breast-Cancer Risk

The purpose of this study is to determine if breast cancer and breast cancer risk can be accurately assessed from a breast milk sample. Currently, there is no accurate way to give women information about their personal risk of developing breast cancer. We will use the cells naturally present in breast milk to examine changes in DNA that occur in association with benign and cancerous breast lesions. Learning about the genetic changes associated with both breast cancer and non-cancerous breast lesions will help us develop a way to provide women with information about their breast cancer risk. Using breast milk to screen for breast cancer will reduce unnecessary biopsies among nursing women.

Who Can Participate? You can join the Milk Study if you are:
• Currently NURSING/BREAST-FEEDING a baby AND
• You are either GOING TO HAVE A BREAST BIOPSY in the near future or you HAVE HAD A BREAST BIOPSY in the past.

What Does Participation Involve? You will be shipped a milk collection container, informed consent form, and questionnaire. You will be asked to complete the consent form and questionnaire and to donate about 2.5 ounces of fresh breast milk from each breast. You will put the consent form, questionnaire, and breast milk in a box that will be picked up by Fed-Ex. You will be asked to provide a copy of the biopsy report. Approximately 1 year after sending your breast milk sample, the researcher will contact you to ask about any breast problems you have had in the last year.

You can also read more about the breastfeeding studies here.

It's a pretty unique study and one that will probably produce some interesting results. The fact that Army of Women has been able to generate interest in this study shows we have entered a new era of clinical study. Currently researchers actively look for participants, even paying recruiting companies and advertising firms to find participants. Imagine the money and energy that could be redirected if people, in turn, came to the researcher.

So, bravo to the researchers, Army of Women and all those women who have enrolled in the study. While we commend those of you who run, walk, and raise money for breast cancer research, joining this type of clinical study earns its own reward in the fight against cancer.

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Cancer and Careers' updates workbook

BY ELIZABETH WHITTINGTON | JANUARY 5, 2011

Just received the latest Cancer and Careers newsletter and found a little gem.

The third edition of Cancer and Careers' "Living and Working with Cancer Workbook" was just recently released, and with it includes new legal information, a job search section and an expanded workbook area. It also includes chapters on legal rights, gathering information, taking time off and returning to work.

The workbook is free to download. You can also order a hardcopy of the workbook through the Cancer and Careers' website (www.cancerandcareers.org) by filling out a brief questionnaire here.

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Got cancer? Blame it on Drew's cancer

BY ELIZABETH WHITTINGTON | JUNE 9, 2009

Even before the lump in Drew Olanoff's neck was confirmed as stage 3 Hodgkin lymphoma, Drew was blaming his possible cancer for life's mishaps--losing his keys, misplacing his wallet, his favorite team losing. He just naturally assumed the lump was cancer. When he was finally diagnosed with lymphoma--yep, he blamed his diagnosis on his cancer, which actually makes a little sense.

Pretty soon, his mom and friends joined in. Next came www.blamedrewscancer.com, a website idea Drew came up with, which was designed by a friend who had actually just beaten Hodgkin lymphoma. On the site, Drew welcomed others to blame his cancer for their own problems. "Why? Because you have to beat up on Cancer to win," he says on the site.

He used the microblogging site, Twitter as his platform. People from around the world who use the site to write about what they're thinking and doing in 140 characters are less are now writing about what they're blaming Drew's cancer for--not having a girlfriend for Valentine's Day, their car not starting, a stomach ache. "My personal favorite is, 'I blame Drew's cancer for Michael Bolton and Fabio.' Completely random, but funny," Drew says.

"I don't want to offend anyone and I don't want to make it look like I'm making fun of cancer," he says, but it's also a way for him to keep a positive attitude through the ordeal. It's also provided an avenue for other survivors to offer support and advice to Drew. "I'm very honored that people are reaching out. It's amazing."

The campaign on Twitter and his website quickly went viral. The site, which officially launched last Thursday, has already racked up more than 9,000 Twitter posts, or tweets, by Tuesday morning. If people post their comment on Twitter with "#BlameDrewsCancer" it will appear on the site and be counted. People can also watch the stream on the site. Future plans for www.blamedrewscancer.com include adding cancer resource links to provide support for others dealing with cancer.

Now thousands of strangers are blaming Drew's cancer for life's little (and big) wrongs. Even the iconic cancer survivor Lance Armstrong chimed in. "I blame Drew's cancer for my broken collarbone in Spain," Armstrong tweeted a few days after the campaign launched. "That was awesome," Drew says.

He's also hoping the campaign can raise money for a cancer charity. He's currently looking for a corporate sponsor to match funds for each person who has blamed Drew's cancer on Twitter. In the meantime, he's also started a Facebook cause page, which has raised more than $1,000 for the American Cancer Society from individual private donations.

So, if it's not yet Friday, the dry cleaners lost your favorite shirt, or ... you happen to have cancer, blame Drew's cancer. It might make you feel better.

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How do we improve cancer clinical trial participation?

BY ELIZABETH WHITTINGTON | JUNE 5, 2009

Nearly 1.5 million people will be diagnosed with cancer this year, but only 3 to 5 percent will enroll in a clinical trials testing new cancer therapies. At this year's annual meeting of the American Society of Clinical Oncology, physicians, researchers, and industry officials gathered to discuss why few patients enter clinical trials and possible solutions to increase that percentage.

While patients' reasons for not entering clinical trials are commonly cited--fear of getting a placebo, not understanding the trial, potential out-of-pocket costs, or fear of being a "guinea pig,"--the session also covered why many physicians don't discuss clinical trials with their patients and other stumbling blocks to clinical trial enrollment.

Two interesting points came up in the talk: Many physicians do not bring up clinical trials to their patients, and strict eligibility requirements prevent many willing patients from entering clinical trials.

Two reasons given why physicians do not offer clinical trials to their patients were lack of knowledge regarding specific clinical trials to offer and discomfort in talking with their patients about clinical trials. In a 1991 survey cited during the session, 55 percent of physicians questioned said they were uncomfortable discussing clinical trials with their patients. Hopefully, this has improved since then.

Communication may also be an issue. In a 2008 survey, 14 percent of patients who were offered a clinical trial reported they were not offered one--obviously more than just chemobrain. Physicians must communicate better with their patients to make sure they understand the clinical trial being offered and the process.

Once doctors interest their patients in clinical trials, strict eligibility requirements may still prevent them from enrolling. Some trials may have restrictions on age or call for a specific disease stage and subtype. Often patients could not have had a prior treatment of this or that or within a certain timeframe. Sometimes measurements of heart function or blood counts have to be in a specific range. For these reasons, and many more, many patients are excluded from trials. The panel at the ASCO session suggested that maybe some of these eligibility requirements could be a little more flexible, which may allow the clinical trials to reach accrual sooner. To drive this point home, there are studies testing promising treatments or combinations that are closed every year due to slow accrual of patients.

Some survivor suggestions from Twitter (www.twitter.com/cure_magazine) echoed many of the panel's suggestions, including allowing minor exceptions for trial eligibility and better communication between patients and doctors about clinical trials. Empowering patients to find trials, including using a matching system where patients are notified of studies they would qualify for, could help patients bring up the topic with their oncologist.

Fortunately, there are several websites that allow patients and survivors (and even people without a cancer diagnosis) to find clinical trials, in addition to http://www.clinicaltrials.gov and www.cancer.gov/clinicaltrials/search.

TrialCheck (www.CancerTrialsHelp.org), a site sponsored by the Coalition of Cancer Cooperative Groups, not only provides information about the clinical trial process, but also allows a patient to search for trials they qualify for by answering a questionnaire about their cancer type, stage, and other information. It also allows patients to save their searches and set up a notification system to alert them when new trials open.

Similarly, the Army of Women (www.armyofwomen.org), a site sponsored by the Dr. Susan Love Research Foundation and the Avon Foundation, is actively recruiting one million women for clinical trials focused on finding the causes of breast cancer and how to prevent it. The site provides a way for researchers to reach out to women interested in participating in these trials. Women who are not currently undergoing breast cancer treatment can sign up on the site and are then notified of select clinical trials, allowing them to choose whether to enroll or not. To date, the site has reached more than a quarter of its recruiting goal after launching in October 2008.

For more on clinical trials, read "Before Treatment: Understanding Clinical Trials" from CURE's 2009 Cancer Resource Guide at http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1016.

Poll: Did your medical team discuss participating in a clinical trial with you when you were diagnosed? Click here to take poll

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