Tigerlily Position on Mandelblatt USPSTF Mammography Study

As a breast cancer survivor, the past three and a half years have been an amazing learning experience for me. As powerful as my personal experience was, learning and becoming an educated advocate has also given me the opportunity to know when to speak up on an issue, and taught me the importance of weighing all aspects and facts before doing so.

Having said that, on Monday, November 16, 2009, the Lombardi Cancer Center at Georgetown University released an analysis led by Jeanne S. Mandelblatt, MD, MPH (of Georgetown Lombardi Comprehensive Cancer Center and a CISNET member), along with six independent team of researchers, which suggests that mammography screening should be done every other year and discouraged the efficacy of women performing breast self-exams and the usefulness of clinical breast exams.

I read the Mandelblatt study with shock, disbelief, outrage, then fear, and sadness for the women who might follow these guidelines.

I will address their recommendations below, and from the perspective of representing younger women – more specifically, the under 40 population:

1. The study states that a comprehensive analysis was done of various mammography screening schedules that suggest biennial screening of average risk women between the ages of 50 and 74 achieves the most benefits of annual screening but with less harm.

a. First of all, the public should be aware that this study is just that – a study. It is by no means a standard that is respected and accepted by the medical and the breast cancer community.

b. Secondly, I would like to know what parameters were used to define a “comprehensive analysis”. I would like to know the demographics of the study participants (race, income, lifestyle, health history, age, etc.). Assuming this study was conducted on women over 40, it does not take into account the younger population, which are at a higher risk because they tend to have more aggressive breast cancers.

It is professionally reckless to conduct a study such as this, which excludes the young adult population and other demographics, which although are in the minority, are more adversely affected by breast cancer and experience wider disparities in care, treatment, long-term health, shortened life-span, fertility, financial and related health and life issues.

The women referred to in this study are stated to be of average risk, and between the ages of 50 and 74 and does not take into account the population of women, 40 and under, who are not “average” risk. It totally overlooks an entire population of women, who although get breast cancer less often than women over 40, 11,000 are diagnosed annually, and approximately 1,100 lose their lives because of late diagnosis, and because younger women tend to have more aggressive breast cancers. These women greatly benefit such as breast self examinations and mammography. Many of their breast cancers would not have been discovered otherwise.

c. The study also states that mammography for women between the ages of 50 and 74 achieves the most benefits of annual screening but with less harm.
What about the younger women, whose breast tumors sometimes double in size in a matter of months? If they are waiting to get mammograms every two years, we would be sending them to their deaths. As an organization, Tigerlily Foundation sees many young women on a regular basis that are alive because they found their lumps and other symptoms in time; and we see young women on the other spectrum – those who were told to wait six months or a year, and as a result ended up being diagnosed with metastatic breast disease, and then the others, who have died because they were diagnosed too late.

As an organization, getting calls daily from younger women, some getting diagnosed in their twenties and learning of new cases of young women in their teens, working fervently to educate young women to be their best advocate and use the only tools we have at this time (breast self examinations, and as they get older, mammography), it is painful to hear of reports such as these, which give the public the impression that they in fact do not need to worry and that there is no real threat – when in fact the harm is greater, if they do not utilize the proven tools, which include BSE’s and mammography.

2. The results of this study represented “a unanimous consensus of six independent research groups from various academic institutions.” This sounds very academic in statement; however, it would be good know the selection criteria for the “independent research groups”, their initial stance on mammography starting and stopping ages, the mechanisms for designing and conducting the study and what their true goal was in conducting and releasing this study. In addition, were the group of physicians who made up the study from a diverse community advocacy background? Who really funded the study , what do they have to gain, and are the results targeted on achieving results that would benefit the insurance companies or other interest group?

3. The study does not take into account again, that if this recommendation were to become a new guideline, the larger costs of healthcare that would be realized when more women outside the range of 50 to 74 begin to appear in doctors’ offices with more advanced breast cancers, needing to have more aggressive surgeries, treatments, prescriptions, counseling, scans and longer terms care.

4. The study talks about public health goals – shouldn’t the public health goal take into account the benefit of everyone, not the majority? If we start ignoring minority populations, what does that then say about us as a people and of the ideals that we stand for? What does it say about the population of younger women, who although are in the minority, suffer higher mortality rates and who will have shortened life spans because they are unaware of the risks, have no access to diagnostics and will be taught to ignore their bodies until they are 50 years old?

5. Another issue is that of false-positive mammograms, unnecessary biopsies and over-diagnosis. At the risk of angering some people, I would rather have the fear that comes with a false-positive mammogram and an unnecessary biopsy than die an early death because I was unaware there was cancer growing inside of me. In addition, being one’s own best advocate does not entail instilling fear – it means just that – empowering women to know their bodies and take the best action to preserve their health. Since when has it been fear-instilling to be educated and given information on options that could save one’s life.

Another concern is that there are also the women who already dislike getting mammograms because they are uncomfortable. I don’t get it. I think having your breasts removed, having to have a year or more of chemotherapy and radiation, losing your hair and ability to have children, enduring neurological damage, scarring – internal and external, pulmonary and cardiovascular problems, as well as other issues with toxicity, due to the treatments associated with breast cancer – not to mention the social, emotional, financial, mental and psychological toll it takes on the individual and family far more outweigh the “harm” caused by “over-diagnosis”. I’ve never a breast cancer survivor alive say that she wishes she’d waited a year or two!

6. One of the statements in the study and press release from Georgetown indicated, “If screening is started at age 40 versus 50 and were performed every other year, there is a median mortality reduction of 19.5 percent (an additional 1 woman per 1000), but an increase in false-positives, unnecessary biopsies, and anxiety.” Again, this does not take into account the under 40 population which is a smaller population, but again, would be adversely affected by increasing the age for mammography to 50 and discouraging breast self exams.

7. The study states that “in the majority of women, most tumors are slow growing and this proportion increases with age, so that there is little loss in survival benefit across the population for screening every year versus every other year”. The study believes that “for women with aggressive, faster growing tumors, annual screening is not likely to make a difference in survival. For these women, different approaches may be needed and is an important area of on-going research”. Again, yes, in the majority of women, most tumors are slow growing, but in younger women it is not, often because of higher estrogen levels and other factors. In addition, every young woman that I know that is a survivor of breast cancer, is alive because she found her tumor in time; and for those of us with faster growing tumors (mine doubled in six months), were it not for monthly self exams, I most likely would not be alive. In this sense, the study’s statements are outrageous.

At Tigerlily Foundation (http://www.tigerlilyfoundation.org/), we believe that although a lot of research still needs to be done to find the most appropriate, timely screening methods for younger women, we cannot eliminate the current, life-saving tools that we currently use. The Mandelblatt study, while it takes into account the average across the community, is not written with a focus on younger women, who have more aggressive types of breast cancers, and therefore, who greatly benefit from monthly self examinations, annual clinical examinations and then mammograms, based on their age, personal and family risk factors.

This study conducted by the U.S. Preventive Services Task Force overall goes against the grain of all the education, awareness and advocacy work conducted by many respected clinicians and researchers for so many years. Early detection saves lives – that has been our mantra, not because it sounds good, but because it works and because there are thousands of women alive because of it. For more than thirty years, organizations such as Susan G. Komen and Breastcancer.org have provided evidence-based information that shows that when detected early, most women do survive.

In an age where there are already adjustments needed to be made to the current guidelines, it throws younger women further into the dark ages, when we are told that 50 is the new 40. We were hoping that 30 would be the new 40 when it comes to mammograms; and we are working to empower women under 40 and girls, to start doing breast examinations right when their bodies start to change – a powerful way to educate themselves about their own bodies, so that as they grow, they are aware of their bodies, and as changes occur, know to take action.

With the changes in and awareness of the toxicity in the environment, certain foods, plastics, hair and skincare products, as we learn about food processing, stress, obesity and other factors that impact younger women; and as we learn about younger women getting diagnosed with breast cancer at younger ages, we cannot let this type of study take root and gain momentum. This study is infuriating and it is a serious mistake. Women have the right and should have access to life-saving diagnostics. I think the average woman would prefer to be over-diagnosed than spend a life with cancer, or be dead. It is that simple. Those who might follow this new guideline may never get the chance to decide or to know.

I think there was a reason people were taught to look left and right before crossing the street, to adhere to stop signs and lights, to brush their teeth every morning and to visit their doctors on a regular basis. As the old adage says, “an ounce of prevention is better than an pound of cure”.
Living with breast cancer is not fun…dying from it should not be an option – just because one happens to be in the minority. The researchers who arrived at this study are not gods and if people see them as such, then the gods must be crazy. Dr. Mandelblott and her team, along with the funders of this study will have a lot of opposition, should they choose to pursue this issue - I promise. On behalf of young women everywhere, this one is not going to fly.