The CoC Source - May 31, 2012
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CoC Holds Annual Committee Meetings

More than 150 participants attended the Commission on Cancer’s (CoC) annual committee meetings, May 17-19, 2012, at the American College of Surgeons (ACoS) headquarters in Chicago, IL.  These sessions involved the main standing committees including Accreditation, Cancer Liaison, Education, Quality Integration, and the Executive Committee.  In addition, sessions were held with the CoC’s member organization representatives and with the state chairs and American Cancer Society division relationship managers.

Highlights from these sessions are as follows:

Accreditation – Reports were presented by the Accreditation Subcommittees that dealt with program review, recruitment and retention, and surveyor performance.  Issues identified with select standards were reviewed and will be clarified in a future issue of the CoC Flash and in the CAnswer Forum.  The guidelines for new programs seeking accreditation were modified to allow one or two deficiencies at the time of the initial survey, and the Outstanding Achievement Award criteria was established for 2013, 2014, and 2015 surveys.  Finally, several reports highlighted ongoing projects involving the Veterans Administration, international accreditation, and standards for pediatric programs.

Cancer Liaison – Committee attendees reviewed program priorities and  the development of educational delivery mechanisms to support Cancer Liaison Physicians (CLPs) in their new role as well as strategies to promote the CoC Paper Competition among the state chairs, and collaboration opportunities with the American Cancer Society (ACS) to identify ways in which the ACS can support the 2012 standards. The committee split into working groups to develop a checklist for surveyors to use in their meeting with the CLP during the survey, and the second group developed a repository of queries CLPs can use when accessing the NCDB tools for reporting to their cancer committees.

Education – Meeting participants reviewed current CoC educational sessions offered through workshops and webinars.  A series of new webinars was released in December highlighting the new standards, and four additional topics are scheduled to be added to the series over the summer. A series of video vignettes is being developed to support each standard for release in the fall, and a new version of the Survey Savvy Workshop is being planned for June 2013.  QuantiaMD was also reviewed as a potential tool for the CoC to use to disseminate more clinically focused content.  Allen Lichter, MD,  chief executive officer of the American Society of Clinical Oncology,  will deliver the keynote address at the CoC Annual Meeting on September 30. Committee members also reviewed and selected oncology topics for presentation at the 2013 American College of Surgeons Clinical Congress.

Quality Integration – The following initiatives were discussed, including the need to update and modernize the coding guidelines contained in the FORDS manual, replacement of the NCDB’s transactional database using more modern architecture, and the design of an updated userinterface for all the NCDB reporting tools. Committee members also dicussed  expandingthe Rapid Quality Reporting System (RQRS),  developing new quality measures for incorporation into the Cancer Program Practice Profile Reports (CP3R) and RQRS, and disseminating the first set of Participant User Files (PUFs) to the 38 applicants. Participants agreed to continue with efforts to support adjusted survival and existing reporting methodologies, and complete a surgical operative mortality analyses for sharing with CoC-accredited cancer programs.

The Member Organization Representatives discussed tools and resources they could contribute to support the new standards for placement on the CoC Best Practice Repository. They also discussed the work of the CoC Advocacy Workgroup and contributed to the discussion about CoC legislative priorities and a CoC legislative briefing being planned for 2013.

The CoC State Chairs met with their American Cancer Society Division Relationship Manager counterparts to establish strategies and priorities for collaboration with the ACS at the division and local levels.  In addition, the State Chairs were updated on the Collaborative Action Plan Guide and Collaborative Action Plan Template developed by the ACS in support of the CoC standards. The State Chairs participated in a review and discussion of numerous resources available to assist them in their role including the State Chair Toolkit, NewsCLiPs newsletter, and the Share point Site discussion board.  The State Chair meeting concluded with breakout groups formatted as a train-the-trainer session to educate State Chairs about the NCDB tools so they can further instruct and support their CLPs as they work to comply with their new standard.

The CoC Information Forum Session included a warm welcome to the CoC’s newest member organizations – the Hematology Oncology Pharmacy Association and the National Accreditation Program for Breast Centers, as well as several presentations of interest to the membership.  There was an update of the CoC National ProvenCare® Lung Cancer Collaborative, a review of the activities of the American College of Surgeons Clinical Research Program and the Alliance, a presentation from one of the College’s Clinical Scholars comparing data from the NCDB to the American College of Surgeons (ACoS) National Surgical Quality Improvement Program (ACS NSQIP®), a review of the issues surrounding the oncology drug shortage by a representative from the Hematology Oncology Pharmacy Association, and a review of the Cancer Support Community’s CancerSupportSource™ distress screening tool.  A successful poster session also featured the activities of 11 of the CoC’s 49 member organizations.

Much was accomplished over the two-and-a-half days of sessions, and thankfully, the NATO Summit, taking place in Chicago at the same time, had no impact on our activities.  We hope all of our volunteers arrived home safely and want to thank them for their contributions and commitment to the CoC. If you have questions about this report, please contact Connie Bura at


Spotlight on CoC Member Organizations

Each year, the member organization representatives of the CoC submit reports of their organizations current cancer care initiatives and areas for collaboration with the CoC. 2012 was a banner year, with 45 out of 49 organizations submitting reports. Each report includes:

  • Major projects and/or key initiatives underway
  • Recently released publications and/or products
  • Scheduled conferences, meetings, and/or educational programs
  • Legislative and/or advocacy activities
  • Emerging issues within the organization that the CoC should become engaged and/or involved in

The reports are posted on the CoC website at

Cancer Support Community Honors Commission on Cancer

On April 26, 2012, the CoC was presented with the Founders Award for Vision by the Cancer Support Community (CSC).  This award recognizes individuals or organizations for their role in envisioning and implementing interventions that positively impact the cancer experience. CSC President and CEO, Kim Thiboldeaux stated, “The CoC has been a tireless advocate and an invaluable partner to CSC in the mission to create a care delivery system that would ensure all patients with cancer receive psychosocial screening and support as an integrated part of overall cancer care."

The Cancer Support Community applauded the CoC for its 2012 Cancer Program Standards. Through the addition of mandatory distress screening, individualized care planning, and survivorship care planning requirements, the CoC created a strong foundation to deliver on their intent of “Ensuring Patient-Centered Care.” 

Co-chair of the CSC Board of Directors, Chuck Scheper, presented the award during the CSC’s 2012 spring celebration gala in New York City.  Accepting on behalf of the American College of Surgeons was Stephen Edge, MD, FACS, the CoC chair.  Dr. Edge offered moving remarks to the group, conveying his personal experience as a practicing physician and left an unforgettable memory for those in attendance.


American College of Surgeons Commission on Cancer Surgical Oncology Scholar-in-Residence Program

The American College of Surgeons (ACoS) CoC is offering a two-year fellowship in surgical oncology outcomes and health services research beginning July 1, 2013.  The ACoS CoC has one position available every two years for a surgical resident who has completed two or three years of clinical training in the U.S. or Canada. The fellow will work within the Cancer Programs Department of the ACoS to conduct clinical research and further the research agenda of the CoC’s National Cancer Data Base (NCDB) whose goal is to improve the quality of care for the cancer patient. The application deadline is August 15, 2012.

Details about the program can be found on the CoC website at

Program questions and completed applications with supporting documentation should be directed to Connie Bura at

What’s Happening with the Comprehensive Cancer Control National Partnership?

In the March issue of the CoC Flash we highlighted the new website of the Comprehensive Cancer Control National Partnership (CCCNP) -  This month we spotlight the recent CCCNP meeting that was hosted by the CoC.  Representatives from 14 of the 16 national partners attended this bi-annual meeting which was focused on evaluating and planning partnership efforts for comprehensive cancer control (CCC) coalitions.   

The evaluation workgroup presented its annual progress report on strategic plan initiatives conducted in 2010 and 2011. Overall, the partnership has made great strides in implementing initiatives identified within the plan. Members of the Communications Workgroup discussed the impact of the new website and strategies to maintain and promote it to the CCC coalitions.  The technical assistance and training plan included review of a series of workshops organized over the next year to address coalition effectiveness, successful implementation efforts, and strategies for turning knowledge into action. Two workshops will take place in August and September in Atlanta involving 10 coalitions each; the remaining coalitions are invited to participate in 2013 workshops.  A forum is planned in September in Atlanta to support the 13 CCC coalitions that received demonstration grants from the Centers for Disease Control and Prevention  to maximize systems change related to breast, cervical, and colorectal cancer screening; tobacco control; nutrition and physical activity initiatives, and worksite programs. The forum will provide coalitions with the strategies and tools needed to implement these initiatives. The CoC and C-Change will sponsor four technical assistance visits over the next year, geared toward coalitions that are struggling to make significant progress on implementation of the priorities contained within their CCC plan or that have functional and/or operational issues.  

Meeting attendees focused on identifying CCC issues and trends in the areas of policy, systems, and environmental change approaches, the Accountable Care Act and CCC coalitions, clinical/community linkages through CCC coalitions, and leveraging partner resources and channels to address CCC needs. Several initiatives and resources identified from these discussions will be communicated to coalitions over the coming months.  On the second day of the meeting, participants focused on updates from the partner organizations and a review of the current strategic plan. Attendees agreed that the current six goals could be streamlined to two focusing on 1) technical assistance and support for coalitions, and 2) coordination of national efforts in support of coalitions. Previous goals around communication and evaluation  will remain as part of the CCCNP infrastructure to support the two main goals. Check out the CCCNP website on a regular basis for news and information about what’s happening in the field of comprehensive cancer control.  Questions about this report can be directed to Connie Bura at

Cancer Program Standards 2012 – What’s New this Month?

Each month we will highlight the newest additions to the CoC Best Practices Repository.  These resources have been reviewed and approved by the Standards Advisory Group for Excellence (SAGE), and are now posted on the repository.

The first resource is a Cancer Registry Quality Control Plan to support standard 1.6. This document was provided by Fairview/Lakewood Hospital in Cleveland, OH.  This quality control plan is used to monitor and evaluate multiple areas of cancer registry activity and the accuracy and completeness of abstracted data.

The second resource, provided by Fairview/Lakewood Hospital to support standard 1.6, is a Physician Quality Control Grid.  This grid is used by physicians to review the accuracy of abstracted data.

The third resource is a Cancer Conference Grid to support standard 1.7.  This document was provided by CB Professional Abstracting & Consulting Services.  The grid is utilized in the evaluation and monitoring of the seven areas essential to ensure compliance with the requirements set by the cancer committee.

The fourth resource, provided by CB Professional Abstracting & Consulting Services, are Cancer Committee Agendas, developed for each of the four quarterly meetings in support of standard 1.4.  These sample agendas are used to ensure that administrative responsibilities related to cancer program leadership are achieved and documented in the cancer committee minutes.

The fifth and final resource is a Cancer Genetics Risk Assessment Checklist that supports standard 2.3 and was provided by CB Professional Abstracting & Consulting Services.  This document is used to identify and counsel people at risk for familial or hereditary cancer.

We hope our programs find these examples helpful as they prepare to comply with the new 2012 standards.  To view these documents follow the link to the Best Practices Repository at

We would like to thank our constituents, member organizations, and staff, for contributing tools and resources for the repository. We would like to encourage all accredited programs to share best practices from your cancer program. Contributions can be submitted to




CAnswer Forum Monthly Highlight: Quick Links

The purpose of this article is to make CAnswer Forum users aware of the many helpful functions of the system.  This month we are highlighting Quick Links.  What are Quick Links?  The navigation bar at the top of each page has several helpful links.  One of them is a dropdown menu called Quick Links (It appears only to registered members who are logged in).  Clicking it once with the mouse will make it drop down and show the following options:

  • Quick Links
    • Today's Posts (shows posts created in the past 24 hours)
    • Mark Forums Read (marks all the threads and posts as read for your session - this is a shortcut alternative to actually reading the threads and posts)
    • Open Contacts Popup (opens a new window with a list of all your contacts)
  • Networking
    • Friends and Contacts (a page from where you can manage your network)
    • Groups (where you can manage your Groups)
    • Pictures and Albums (where you can manage your pictures and albums)
  • User Control Panel (clicking this takes you to your personal user control panel)
    • Edit Signature (edit your personal signature that appears below posts)
    • Edit Your Details (edit your personal profile details)
    • Edit Options (manage your community settings)
  • Miscellaneous
    • Private Messages (manage your private messages, read your inbox, create new messages, etc)
    • Subscribed Threads (get an overview of your subscriptions and options to manage them)
    • Your Profile (loads your social profile)
    • Who's Online (see which users who are currently online on the board and what they are doing)

Take the time to investigate and use one or more of these Quick Links the next time you access the CAnswer Forum at


Highlighting the 2012 Standards – Chapter 4: Standards 4.3 – 4.5

Standards 4.3, 4.4, and 4.5 are another new area of CoC activity—measuring and assessing CoC-accredited program performance with standards of care for specific sites and stages of disease. In addition, by assigning specific responsibilities to the Cancer Liaison Physician (CLP), this individual becomes a true clinical champion for improving cancer performance that impacts both the CoC-accredited facility and its cancer patients.

Standard 4.3 – CLP Responsibilities
From the inception of the CLP program, this physician has taken charge of promoting CoC accreditation at the local level, working on screening and prevention programs, and acting as a liaison between the facility, CoC, and the American Cancer Society.  The standard brings a new focus to the work of the CLPs by asking them to take the lead to evaluate, interpret, and report the CoC-accredited program’s performance to the cancer committee. 

Multiple National Cancer Data Base (NCDB) tools can be used to evaluate performance.  The most readily apparent choice is the Cancer Program Practice Profile Reports (CP3R), but the hospital comparison benchmark and survival reports are other good sources.

The CLP will assess and report program performance to the cancer committee four times each year with the goal being to identify and correct performance issues sooner rather than later.

Standard 4.4 – Accountability Measures
This standard addresses measures that have that have been validated as the standard of care through the clinical trial process.  Currently, four performance measures that address specific cases of breast and colon cancer are included in this standard.  At present, the CoC expects programs to demonstrate a 90 percent performance rate for each accountability measure.  This includes the upper bound of the 95 percent confidence interval.

The cancer committee is expected to address areas that fall below the required performance rate by developing and implementing a corrective action plan.  The plan needs to be customized to address issues with these measures that do not meet performance levels.  Actions could begin with a review and revision of the data collection methods for treatment performed outside the facility or address physician practice patterns that fall outside the norm.

Compliance with the standard is determined by the surveyor’s review of a sample of cases identified by the NCDB, through the review of the action plan, and discussion with the cancer committee on steps being taken to correct performance.

Standard 4.5 – Quality Improvement Measures
This standard is similar to standard 4.4, but the measures included are considered to be good clinical practice but are not based on clinical trial evidence.  Currently, two measures that address specific cases of colon and rectal cancer are part of the standard; however, the CoC expects to add new measures to this standard later this year.  A performance rate has been established for the measure that addresses the resection of 12 regional lymph nodes in colon cancer.  The CoC expects programs to demonstrate an 80 percent performance rate (including the upper bound of the 95 percent confidence interval) for this measure.

As with standard 4.4, the cancer committee addresses areas that fall below the required performance rate by developing and implementing a corrective action plan.  The action plan could begin with collaborative work between the surgeons and the pathologists to ensure that an adequate number of lymph nodes are resected. 

The surveyor will review the cancer committee’s minutes and discuss action plans with the cancer committee in order to assign a rating for this standard.

Taken together, these standards enable CoC-accredited programs to demonstrate that patients receive care that is consistent with standards of care and good clinical practice thereby promoting a good outcome for the patients with cancer who are treated at the facility.

Next month – Standards 4.6 – 4.8

Questions about the 2012 Cancer Program Standards can be submitted to the CAnswer Forum at

July 1, 2012 Expiring Terms for Cancer Liaison Physicians

Cancer Liaison Physicians (CLPs) serve a three-year term and are eligible to serve an unlimited number of terms based on performance and evaluation data collected at the time of survey. The terms of more than 207 CLPs will expire in July 2012 and each cancer committee must determine whether the current CLP is appropriately serving in this role or if another candidate would better suit the position. 

In June, the CoC will email letters to the programs with a CLP whose term is expiring. The letters will include details on how a facility can either reappoint the CLP to another three-year term or recommend a replacement.

If you reappoint your CLP, please use this time to update and confirm your CLP's contact information in the CoC’s database. We also accept assistant email addresses to add to the CLP record.

Important Reminders for Accredited Programs:

Following a new CLP appointment, the facility must update the staff contact information in the Survey Application Record (SAR) located within the CoC Datalinks application.

CLPs can be replaced at any point during their three-year term. If a facility’s cancer committee would like to replace its CLP, then a CLP Membership Application Form should be completed.  An electronic or printable application can be found at

Please note:  A facility cannot appoint a new CLP by simply changing contact information within the SAR; the CoC must receive an application.

Questions can be submitted to

Learn about the Key Players Involved in Implementing the New Standards

Not sure what role each cancer committee member should play on your team under the new 2012 standards?  Review this free webinar with your team to assist in identifying key members of your cancer committee.  “So... Who Are the Key Players Involved in Implementing the New 2012 Cancer Program Standards?” describes each role and offers suggestions in fulfilling these key positions using a team-centered approach.

Access this free webinar through

SAVE THE DATE for Survey Savvy 2013!

The next Survey Savvy will be June 26-28, 2013 in Chicago, IL. There will be an optional Rapid Quality Reporting System (RQRS) Workshop on June 26, held at College Headquarters. We will be examining the new 2012 Standards in greater depth at this conference. Registration will be $600 per person and hotel is $239 per night. Stay tuned to the CoC Flash for updates as they become available.


Collaborative Stage Improvement Suggestion Site

The Collaborative Stage (CS) teams announce the availability of a website for the collection of feedback, comments, and suggestions related to the CS Data Collection System. 

The comments and suggestions for improvement submitted through this website will be reviewed by the CS teams, including the Governance Committee, Mapping Team, Informatics Team, and Education and Training Team as appropriate. The information received will be considered by these teams as future versions of CS are designed, developed, and deployed.  Also, feedback on these suggestions will be provided to the CS community as appropriate via future National Association of Central Cancer Registries (NAACCR) and CoC communications. 

The CS Improvement Suggestion site can be accessed through the NAACCR website and is open to the public.  All submissions will be recorded anonymously.  You can access the site via the NAACCR home page or through this link:

This website is not intended as a mechanism for users to submit questions related to the use and coding of CS. All medical, abstracting, coding, and staging questions should continue to be submitted to the CAnswer Forum at  Questions submitted to CAnswer Forum are reviewed and answered by the CS Technical Advisory Panels in consultation with CS schema mappers.




Register TODAY – Pursuing Excellence through Accreditation

It’s not too late to sign up for the National Accreditation Program for Breast Centers’ (NAPBC) next workshop, Pursuing Excellence through Accreditation!

When: Friday, June 29, 2012

Where: Chicago, IL


  • Detailed information related to the NAPBC components and standards, survey process, and the new data collection tool
  • Surveyor’s perspective will walk through a site visit
  • Administrator’s view on what it takes to achieve accreditation

NAPBC board members, surveyors, and staff will present information at the workshop. Most importantly, a presentation specific to the NAPBC components and standards, including an outline of the requirements for meeting compliance with each standard, will leave participants with vital information to take back to their centers. The workshop will also incorporate any changes to the standards so that there is a clear understanding of the expected performance and how it will be measured.

Pursuing Excellence through Accreditation is designed for individuals involved in the delivery of multidisciplinary breast health care, including physicians, nurses, administrators, cancer registry professionals, and others involved in the day-to-day operations of the breast center.  New centers and those due for reaccreditation will benefit from attending.

Registration is NOW OPEN at     

As these workshops are always well-attended and seating is limited, enrollment will be on a first-come, first-served basis.

SAVE THE DATE – November 16-17, 2012 – NAPBC First Annual Conference

The NAPBC will host its first annual conference November 16-17, 2012, in Chicago, IL. Learn from the experts who developed the standards. This two-day meeting will include nationally recognized authorities discussing:

  • Critical success factors for comprehensive breast centers
  • National Quality Programs: The what, why, and how of NAPBC, NQMBC, and BICOE
  • Developing a high-quality breast program
  • Defining benchmarks for breast centers of excellence
  • Breast diagnostic imaging quality metrics
  • Benefits and cost-effectiveness of breast center programs: patient navigation, genetic risk assessment and counseling, survivorship, and advocacy
  • And more…..

The ideal audience for this meeting includes hospital chief executive officers, chief operating officers, service line administrators, breast program leaders (BPL) and other physicians involved with breast centers, radiologists and technologists involved with breast centers, nurse navigators, quality managers, breast imaging supervisors, genetic counselors, and social workers.

More details about how to enroll for this meeting will be available in the near future.

2012 NAPBC Standards Manual NOW Available!

The 2011 NAPBC Standards Manual is now available as a free download or a hard copy may be purchased for a nominal fee at Compliance with these standards will be required for centers applying for accreditation on or after June 1, 2012.

NAPBC Exhibit Schedule

The NAPBC is scheduled to exhibit at the following national meetings:

American College of Oncology Administrators
June 21-22
American College of Surgeons Headquarters
Chicago, IL
Breast Cancer Coordinated Care
July 19-21
JW Marriott
Washington, DC

Stop by the exhibit hall at any one of these meetings and pick up an NAPBC Information Kit or additional information about the program.


Sarah P. Burton, CTR, Installed as president of the National Cancer Registrars Association
Sarah P. Burton, CTR, was installed as the president of the National Cancer Registrars Association (NCRA) at its Annual Educational Conference in Washington, DC, on April 21. As president, Burton will represent the organization at regional and national meetings and support its mission to promote education, credentialing, and advocacy for cancer registry professionals.

Burton has a well-established career in cancer registry management and earned her Certified Tumor Registrar (CTR) credential in 2003. Burton works at the Cincinnati-based Electronic Registry Systems (ERS) where her responsibilities include client education and training, software sales and marketing, and product testing and development. Prior to her work with ERS, Burton was at Registry Partners, a Burlington, NC, company, where she focused on CoC-accredited programs.

Burton will focus her year as president on promoting issues of importance to her and the profession. As many experienced cancer registrars near retirement, she will support NCRA’s current efforts to increase the numbers of those entering in the profession by delivering cost-effective online education and training, offering mentoring programs, and increasing the number of facilities that provide practicums. Burton will also seek ways to assist current cancer registrars in preparing for a year of change — a year that will include a new version of CS, new CoC Cancer Program Standards, and a new Hematopoietic Database. 

New Edition of NCRA’s Informatics Guidebook is Released
The new edition of the National Cancer Registrar Association’s Informatics Guidebook includes new and updated information. The purpose of this important resource is to increase registrars' knowledge of the use of electronic data and to better understand how it is exchanged and stored. The guidebook covers hospital and central registries, but it is written from the viewpoint of the hospital registrar. The product, once ordered, will be available free as a pdf. A printed version is also available for a nominal fee.

June 29 is deadline for Hendrickson Scholarship for CTR Exam Candidates
The Hendrickson Scholarship was established in memory of Robert Hendrickson, president of ONCO, Inc., a respected leader in the oncology data services field.  The scholarship supports those seeking the CTR credential. Application deadline is June 29. For more information, go to





Cancer Patient Perspective on the Drug Shortage: Share Your Stories Now

Since early this year, there has been increasing coverage in the media regarding a shortage of generic drugs in the U.S. Given generic drugs yield little profit compared to brand-name patented pharmaceuticals, there are few U.S.-based companies and limited competition among them. Therefore, when production slows or shuts down at one company, as has happened recently, there is little capacity or economic incentive for another company to step in and fill the gap, resulting in a net reduction of supply. Among the drugs in limited supply are those commonly used to treat a number of cancers. Patients and providers have reported delayed or revised chemotherapy and palliative care regimens as a result of drugs not being available at local hospitals. Aside from cancer, generic drugs are often used to treat infections, and also applied in emergency room or intensive care unit settings as well as medical research protocols. In addition, the drug shortage is yielding a “gray market” that increases hospital costs and affects patient outcomes. Congressional legislation that would address the generic drug shortage problem is pending.

To better understand the cancer patient perspective on the drug shortage, the Lance Armstrong Foundation is currently fielding a survey that mirrors the questions from the American Hospital Association drug shortage survey for providers, but for a patient audience. The primary goals of the brief survey were to 1) assess if survivors were aware of a generic drug shortage in the U.S. and 2) gauge the impact that the drug shortage has had on people affected by cancer.  To date, results from the more than 90 individuals who have experienced the drug shortage, with the most commonly reported adverse effects including not being able to receive the medications needed for cancer treatment (37 percent) and having a delay in treatment (31percent). We encourage you to share both information about the drug shortage and the link to the survey by accessing Results from this survey will be shared in the future with CoC members.

Monthly Spotlight: The National Coalition for Cancer Survivorship

The Commission on Cancer regularly collaborates with more than 50 member organizations in its mission to provide quality cancer care. This month we introduce the National Coalition for Cancer Survivorship (NCCS).

NCCS is the oldest survivor-led and governed cancer advocacy organization in the U.S.  Now in its 25th year, NCCS advocates for quality cancer care for all people affected by cancer and provides tools that empower people to advocate for themselves. Founded by and for cancer survivors, NCCS created the widely accepted term “survivorship,” to describe the period from diagnosis until the end of life.  NCCS defines someone as a cancer “survivor” broadly to include all those who support someone with a diagnosis of cancer.  NCCS strongly believes in evidence-based advocacy that reflects the needs of all cancer survivors to effect national policy change. By advocating for patient-centered, coordinated care through treatment planning and survivorship care planning, NCCS works to ensure that cancer survivorship remains at the center of health care policy.

Believing that access to credible and accurate patient information is fundamental to understanding and receiving quality cancer care, NCCS offers free publications and resources that empower individuals to become strong advocates for their own care or the care of others. Patients empowered with information and tools can receive optimal care by making their needs known to their doctors, care teams, health plans, and elected officials.

NCCS and Policy Priorities
NCCS advocates for high-quality, coordinated health care for people with all types of cancer by focusing on health policy issues in areas that include the following:

  • Quality, comprehensive cancer care
  • Accessible, affordable, comprehensive coverage
  • Access to safe and effective therapies for cancer
  • Clinical Trial Access and Enrollment
  • Cancer research policy and funding

NCCS supports the Comprehensive Cancer Care Improvement Act (CCCIA), which aims to ensure that cancer patients have access to comprehensive, coordinated care that combines disease-directed treatment with symptom management throughout the survivorship trajectory.  Now in its fourth introductory session of both the House and Senate, the CCCIA offers a comprehensive, evidence-based, aggressive, and thorough set of Institute of Medicine (IOM) report recommendations to reform the system of cancer care. Through recommendations to reform cancer payment to providers, enhance the training of professionals who treat cancer survivors, and by testing and expanding model systems of integrated care, the Act would advance a comprehensive system for quality cancer care.

To work more deliberately and collaboratively as a true coalition of advocacy groups, NCCS created the Cancer Leadership Council (CLC) in 1993 as a forum for discussion and advocacy on issues related to cancer health policy from the patient/survivor perspective. Nearly two decades later, the CLC has grown from eight cancer patient organizations to 33 groups as additional cancer patient organizations, professional societies, and research organizations have joined to participate in health policy and advocacy initiatives to advance quality cancer care. 

Journey Forward® is a collaboration between NCCS, the Oncology Nursing Society, the University of California, Los Angeles Cancer Survivorship Center, WellPoint, Inc., and Genentech, Inc. that promotes the use of treatment summaries and follow-up plans, which give clear steps for care and monitoring after active cancer treatment. Journey Forward is a free software tool that allows oncology providers to easily create a survivorship care plan to enhance communication and care coordination between patients and their providers, including primary care physicians.

The Journey Forward program was inspired by recommendations from the Institute of Medicine’s (IOM) November 2005 report on adult cancer survivorship, “Lost in Transition: From Cancer Patient to Cancer Survivor,” which concluded that there is currently no system of coordinated follow-up care for cancer survivors in the U.S. Upon completing treatment, many cancer survivors are left with questions, such as “What’s next? Who is in charge of my care now?  How do I know if my cancer returns? What should I look for?  What should my other doctors know about my cancer?”

NCCS’ Patient Resources
NCCS understands that access to credible and accurate patient information is fundamental to understanding and receiving quality cancer care. The coalition’s resources encourage dialogue between cancer patients and survivors and their health care team.

NCCS’s flagship program is the award-winning Cancer Survival Toolbox®, a series of audio scenarios that address the many topics and issues cancer patients/survivors face during their cancer journey. The conversations touch on issues from how to communicate with your doctor, family, and loved ones to understanding complicated financial issues.

The NCCS also provides print publications that meet patient needs through the various stages of cancer survivorship. Booklet topics include insurance, employment, finding hope, self-advocacy, and communications with providers.

The NCCS Pocket Cancer Care Guide is an iPhone® app that was created to allow patients and their caregivers to prepare for and make the best use of appointments with providers. Users of the app can browse questions in categories relevant to stages of a cancer diagnosis, build lists of questions to use when talking to their doctor, record and play back the doctor's answers, and link doctor appointments to the lists and automatically add it to the calendar on the iPhone.

This year, the NCCS Pocket Cancer Care Guide was an official Webby honoree and has been recognized as a submission of exceptional quality in the Lifestyle (handheld devices) category under Mobile & App.

For more information on this organization, please contact:
The National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770, Silver Spring, MD 20910
Phone: 877.622.7937 | Fax: 301.565.9670
Website: | E-mail:

Report Outlines Innovative Breast Cancer Rehabilitation Model

Experts Recommend Surveillance Approach to Rehabilitative Care

A new supplement in the American Cancer Society's Cancer journal outlines an innovative prospective surveillance model (PSM) that could reduce the incidence and severity of breast cancer treatment-related physical impairments. The model was developed by a panel of internationally known experts convened by the American Cancer Society, supported by a grant from the Longaberger Company®.

Although breast cancer patients often experience pain, fatigue, lymphedema, cardiovascular effects and other impairments leading to functional limitation, the current model of care for breast cancer, which focuses on treatment followed by ongoing surveillance to detect recurrence, does not include systemic referral of patients to rehabilitation. The supplement points to evidence that supports the implementation of a prospective surveillance model for treatment of common breast cancer-related physical impairments, education to facilitate early identification of impairments, the  introduction of rehabilitation and exercise intervention, and the promotion of physical activity through the trajectory of disease treatment and survivorship.

The Cancer supplement features 16 articles that discuss the current state of the science and the prospective surveillance model. The supplement is now available for free at and appears in the April 15, 2012 print issue of Cancer.

Global Standardization in Imaging: SNM CTN’s Site Qualification Program

As a part of the Society of Nuclear Medicine’s (SNM’s) goal to improve the quality and standardization of molecular imaging, SNM launched the Clinical Trials Network (CTN) in August 2008.  The CTN facilitates the effective use of molecular imaging biomarkers in clinical trials, ultimately to increase the availability and performance of molecular imaging biomarkers for clinical use and promote faster and more cost-effective therapeutic drug development.

A key component of the CTN is to ascertain and sustain the qualification of imaging centers around the world through their demonstration of the ability to consistently acquire high-quality images. Toward this end, SNM relies on its long-established imaging phantom program. Phantoms, with a known quantity and distribution of activity, evaluate each site’s imaging capabilities and ensure standardization and compliance with defined protocols in order to assure consistency across multiple centers in a single trial. This program relies on a unique chest oncology phantom that was designed specifically as a clinical simulator to evaluate the detection of lesions in an anthropomorphic model.  Known quantitative characteristics for measuring the PET/CT scanner’s ability to accurately measure standard uptake values (SUV) at various anatomic sites and in simulated lesions are used as reference. The phantom uses a precision filling technique that requires a specific concentration of F-18 be injected into the background body cavity and then into the lesions located within the phantom. Qualitative and quantitative evaluation of the images is thus possible, unlike the use of standard PET phantoms that provide only quantitative measurements and do not evaluate lesion detectability. The CTN’s unique phantom testing program allows comparison of image quality and quantitative measurements at count densities and image noise that are similar to clinical imaging conditions and count rates.

As part of the validation process, imaging personnel complete worksheets and the site physician reviews the PET images, recording the location of the simulated lesions on the worksheet.  The size and location of the lesions are designed to be challenging for the scanner and physician, with one lesion pushing below the limit of detectability by many scanners. If properly performed, the phantom images should be comparable and reproducible across all sites in a multicenter study for image noise and texture, quantitative accuracy and lesion detectability.  CTN validation of the scanner is awarded only after all of the following required criteria are deemed acceptable:  accurate measurement of prescribed amounts of [F-18]FDG, on-time acquisition, acquisition of CT and PET images with acceptable parameters and proper alignment, reconstruction and filtering parameters, lesion detectability in the images and by the site physician, image uniformity, resolution, noise (both texture and smoothing), lesion to background contrast, accurate attenuation correction, and accurate SUV measurements by the site and CTN reviewers.

In a side-by-side independent comparison with the ACRIN and EANM phantoms, the CTN chest phantom was found to be equal in ease of use and produced comparable images.  Some imaging contract research organizationss now accept the CTN chest phantom in lieu of their own phantoms for some multicenter oncology studies. In addition to the chest oncology phantom, the CTN has available phantoms for cardiac and brain imaging.

Validation of a site’s PET/CT scanner is just one part of the CTN Site Qualification Program. To become fully qualified and be recognized as a premier clinical research site in the CTN database, the site must meet the following minimum requirements: complete all fields in the online CTN database, which includes information on the research infrastructure, PET/CT scanners available for use in research and all site personnel (radiology/nuclear medicine investigator, technologist and /or research coordinator) involved in imaging research.  They must display the willingness and time to dedicate to a clinical trial (even without prior experience).  The site must have access to experimental PET imaging agents and list the source for these PET drugs in the database.  Finally, an institutional review board (IRB) must be available either on-site or through a central IRB agency to review and oversee human subject trials.  Once all of these items have been addressed successfully, the site qualification and monitoring committee reviews the site’s information and makes a decision on the level of qualification.  The site is then expected to remain compliant by updating their information in the CTN database and complete annual scanner revalidations, all of which is monitored by this committee. 

For more information about the CTN, visit the Society of Nuclear Medicine website at

Plan to attend Joint International Oncology Congress (JIOC): 5th Symposium on Cancer Metastasis and the Lymphovascular System and the 8th International Sentinel Node Society Congress

Thursday, November 29 – Saturday, December 1, 2012
Hyatt Regency Century Plaza, Los Angeles, CA 90067

An internationally renowned faculty will provide updates in the understanding of cancer metastases, especially sentinel lymph node biopsy concepts and technology, and the molecular mechanisms involved in the progression of cancer cells to metastasis. The faculty will highlight new developments in biomarker research and their diagnostic and prognostic applications in metastatic disease. The program will also feature targeted therapy against cancer biomarkers.

Co-Chairs for the event:
8th International Sentinel Node Society Congress (ISNS)
Armando E. Giuliano, MD, FACS
President, International Sentinel Node Society
Executive Vice Chair, Surgery
Associate Director, Surgical Oncology
Cedars-Sinai Medical Center
Los Angeles, CA

5th International Symposium on Cancer Metastasis and the Lymphovascular System
Stanley P.L. Leong, MD, FACS
President, Sentinel Node Oncology Foundation Chief of Cutaneous Oncology
California Pacific Medical Center and Sutter Pacific Medical Foundation
San Francisco, CA

For more details and information, visit
Send an e-mail to, or call 845-398-510.

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