Last week I gave all of us the challenge to consider using Breast Cancer as the framework to impact Lung Cancer. It made me begin to think, what was the trajectory of breast cancer, how did they get to where they are today, and what is the roadmap for Lung Caner.
In order to understand where we may be able togo with lung cancer, we need to understand where we originated from with breast screening, breast cancer, and breast cancer awareness.
According to the paper “The Evolution of Mammography” by Lawrence W. Bassett and Richard H. Gold from the American Journal of Radiology Online the first historical use of mammography may have been performed in 1913 by a German Surgeon names Salomon. Dr. Salomon used X-Rays to be able to review 3000 breasts that had been removed from patients. He was able to do 2 things: show haw cancer could infiltrate the breast and be distinguished from a cancer that is restricted to a specific area in the breast, and secondly, was the first to identify a palpable mass in the breast and write a physician report documenting his findings. Yeah, Dr. Salomon!
The 1930’s: Dr. Stafford Warren pioneered the clinical use of mammography. He did a few very important items: described and classified the appearances of normal breasts, identified fatty and glandular types, changes from pregnancy, mastitis, benign and malignant cancers. He also made the case for comparison of the right and let breast to one another as well. Other contributions were made by Lockwood, Gershon-Cohen, and Strickler with a paper on the variations of the normal mammogram for radiologists.
Through the majority of the 1950’s most of the work was on the technical difficulties, differences between malignant and benign abnormalities, and the criteria to establish what is cancer and what is not cancer.
It was work again by Gershon-Cohen and another physician, Dr. Eagan in 1960, that established a reproducible technique to perform mammograms and reporting on the results of a 1000 patients that changed the momentum in mammography. In 1965, the American College of Radiology (ACR) had an ad hoc sponsorship to hold the Standardization Conference on Mammography. This conference established the the recommendations on he dose and techniques. It also established the techniques for quality diagnostic examinations. After this occurred, the ACR established a Mammography Committee led by Wendell Scott. Through grant work and other financial means they were able to educate radiologists and technicians through education programs and centers established throughout the US.
In 1973, a report on the 5 year follow up results of the Health Insurance Plan of Greater New York’s randomized, controlled, breast cancer screening study. Compared to the control group, the group of patients that were screened with mammography and physical examination had a 33% reduction in mortality rate.
In addition in the 1970’s there were also two competing additional factors. The first was the publics fear of radiation exposure and how it could potentially harm them, and the second, was the innovation in a high definition intensifying screen, film processing, and ability to lower radiation exposures.
In 1976, the recommendations from the American Cancer Society established the a breast self exam should began in high school aged women, and that mammography was as follows: 35-39 year of age (yoa) only if personal history, 40-49 yoa if mother or sister had breast cancer, 50 and older should have it performed yearly. (you can click the link to see the changes in clinical breast examinations)
From 80-82 the only changes were performed on the criteria for screening based on age. 35-39 you: baseline mammogram; 40-49 consult personal physician, and over 50 yoa yearly.
From 1983-1991 the personal self breast exam was recommended in women 20 years of age and older to be done monthly. For mammography, women 35-39 a baseline mammogram, 40-49 a mammogram every 1-2 years, and women 50 and older should receive one every year.
Which coincides with the awareness and activism that occurred during the same time. In 1990, actor Jeremy Irons was seen at the Tony Awards with a bright red ribbon pinned to his lapel. This ribbon was to bring awareness to AIDS and HIV. (The original yellow ribbon was tied around a tree in 1979 by Penney Laingen, in support and hope to see her husband was had been capture in Iran)
Byt the fall of 1991, Susan G. Komen began to hand out pink ribbons to the participants in the New York City Race for the Cure. Previously they had handed out pink visors. Yet, the pink ribbon need an addition boost for national attention.
In 1992, Alexandra Penney was the editor in chief for Self magazine. She was working on her second edition of the breast cancer awareness month issue. So she went back to Evelyn Lauder, from Estee Lauder, who was a breast cancer survivor, and asked her to distribute a pink ribbon that she was going to create for that years issue of Self Magazine. Evelyn Lauder took it a step further and said not only would she place them in New York City, but she would place them in every cosmetics counter in the US. That year alone, Estee Lauder handed out 1.5M ribbons, along with a laminated card explaining how to perform a breast self exam, and also acquired 200,000 pink ribbon signatures to a petition urging the White House to increase the funding to breast cancer research.
In 1992-1997 the recommendations for breast screening changed once again. They eliminated the baseline in women 35-39. They still recommended in women 40-49 to get a mammogram every 1-2 years, and in women 50 and older, to obtain one yearly.
In 1997-2003 the recommendation for mammogram was changed to women ages 40 and over, to obtain one yearly.
The only other major changes that have occurred to date is for breast self exams, women should be educated and report any changes in breast tissue or findings, but it is optional. Mammograms according to the ACS is still the same, only change being that once a woman is not in good health, that a mammogram may be then optional.
In thinking about this, it literally took decades of work, research, philanthropy, dedication, storytelling, and education to make the progress that we see today. The sea of pink and the impact that there is increased access to screening mammograms, that more breast cancer is being found earlier, and that we are changing the number of women dying in the US of breast cancer. (Let’s remember that breast cancer is still a huge global issue, with many women still being diagnosed at Stage IV, the latest stages, not having access to screening, care, or treatments. Many women still perish at the hand of breast cancer.)
So what do the stories of so many women and families impacted and lost to Breast Cancer mean to Lung Cancer?
To me, I believe it brings hope. It show the work that needs to be done. It gives a framework for success, and it gives opportunities to use new tools to “amplify” our stories, to unite, and to accelerate the same progress that needs to be made for Lung Cancer.
In November of 2010 the initial results of the National Lung Screening Trial were released. At the end of June, 2011, the final results of the National Lung Screening Trial (NLST) were published online in the New England journal of Medicine. They were then printed in the print version of the same journal in August of 2011.
The conclusion of the study was simple: Patients that were deemed to be in a high risk category of Lung Cancer, when receiving a Low Dose CT Scan, had a 20% lower risk in dying of lung cancer than patients only receiving a chest x-ray.
In thinking back to the timeline for breast cancer, it took almost 20 years to go from the ACR establishing guidelines, techniques, and educational programs to teach technicians and radiologists to read and perform mammograms to it being something that was adopted and began to become routine. It took almost 30 years for it to become a movement in the early 90’s. It took an additional few more years to show the impact in survival rates and early detection for breast cancer patients.
How does Lung Cancer expedite this time frame?
Well, I believe there are a few items we can do to help move this along faster, quicker, and make a big impact.
1. We have the NLST and currently the USPSTF released a “Draft” statement showing the benefits of low dose CT Screening in High Risk patients for Lung Cancer. In addition, the National Cancer Care Network, the ACS, The American College of Chest Physicians, the American Society of Clinical Oncology, and the American Thoracic Society have all made and approved recommendations for low dose CT screening in high risk patients for Lung Cancer.
2. Once the USPSTF releases their final recommendations, if it supports, we will most likely see the adoption and payment by insurance companies.
3. Currently there are many healthcare systems and organizations that are offering low cost Lung Screening Programs to their communities and patients. They may want to consider making this a “free” service. Most lose money on the diagnostic side of things, however, if you build a good program that offers monitoring of the pulmonary nodules that are suspicious but not cancerous, it could be viewed as a way to build patient/customer engagement and loyalty.
4. American College of Radiology and others needs to help develop a set of recommendations on the criteria for using PET-CT to evaluate and monitor the small pulmonary nodules that are found during a Lung Screening CT. The criteria needs to be in the lesions smaller than 1cm, and need to have better specificity and sensitivity. This way, if you can see that it is active, you can readily detect cancer earlier, and may also impact survival rates.
5. 23andME or others in Genomic Sequencing and Molecular Diagnostics: As patients are participating in the Lung Screening Program, healthcare should be thinking about also offering genomic sequencing to their patients. Take the framework that is established by ISPY-2 and use it in this environment. Imagine, if you being to understand the dan signature of each patient being screened, those that do not develop cancer, and those that do develop cancer, one day, you may be able to do perform a simple blood or DNA test that will be able to screen if one will get Lung Cancer and those that do not.
6. Treatment: When the patients move on to treatment, if there is a national database from the above, one can then also begin to use the same data to show how you add new drugs to current standards or chemotherapy, and show which ones have an impact and which ones do not. As new people are being treated, you can make realtime adjustments based on the the data that is continuing to grow.
7. Ribbons: Lung Cancer needs to think of their own national stage for a ribbon. Maybe it isn’t a ribbon. Maybe ribbons are noise. Maybe we need to think outside the box, figure out a new symbol, and find a way to launch it? Just thinking on the fly, maybe it needs to be balloons? Think of it, balloons are items that everyone likes, they are everywhere, but other than birthdays, they have no real purpose. Maybe Lung Cancer can prowl balloons into the limelight, gran the national spot light, and be the symbol for all of us. They expand and contract like lungs, when there is not more air, or something gets inside of them, they do not function they way they should, just like lungs, and if they aren’t full of air, there is no life. Just like lungs. The sudden “pop” of a balloon is impactful. It gets a reactions. It is unexpected. It is scary. Sounds a lot like Lung Cancer, Lungs, and the stories of people impacted by lung cancer.
8. Social Media: Today we have Twitter, Facebook, Google+, LinkedIn, TedMed, MedX, and all of the many amazing Lung Cancer Programs, Councils, and Foundations. How about uniting, banding together, and having a meeting in which they all come together, figure out the messaging, the roadmap, the work, and the messages that need to be performed. Let’s work like a fist instead of fingers. Fingers along can only do a few things, however, when they clench together and make a fist, they pack a punch that is mighty, impactful, and can be felt. Let’e be a fist.
I could go on with this post, but it is about action. Breast cancer and all of those lives gave us the framework to be successful. I thank you, all of you, for doing the heavy lifting and showing the families and supporters of Lung Cancer the map to reach the destination.
I just outlined one of many plans that could be a way for Lung Cancer to reach its destination in a few years rather than many decades.
My story is one of connecting the dots. I listen to the stories of all cancers, all patients impacted, and the families left standing due to cancer.
What will your story be in progressing this forward? Please pick up a pencil and begin writing your story today.
As always, feel free to contact me at firstname.lastname@example.org
~CancerGeek#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #LCAM2013 #hcpt #grief #acceptance