Connecticut Cancer Partnership

New Workgroup: Survivorship, Early Onset Cancers

Notes from Feb. and March 2024 Meetings

Attendees: Feb and March  meetings

Adaeze Uwandu-DPH

Adebola Idowu-DPH

Andy Salner-HHC

Angelica Katz- Komen

Alyson Codner-DPH

Amber Kapoor-Middlesex

Aya Abdullah-Wesleyan

Brenda Cartmel-Yale

Dawn White Bracey-Sisters Journey

Deb Walker-HHC

Debbie Vincent-Gilda’s Club

Elizabeth Valett-ACS

Eileen Esdaille- Sisters Journey

Georgann Torres

Jamie Reedy-Smilow Early Onset Program

Juana Adams-ACS

Jenna Addison- Yale, Bridgeport

Katie Shuttleworth-DPH

Katrina Swett-DPH

Linda Alderman-ACS CAN

Lucinda Hogarty-CCP

Nancy Borstelmann, Smilow, Early Onset Program

Neal Fischbach-Yale Thrive

Nora Brugeuras-Survivorship contractor

Robin Baker-DPH

Sakinah Suttiratana-Yale

Saly Cascella-Smilow, Bridgeport


Wendy Mayo–


Welcome and Introductions of New Members

  1. Data regarding early onset cancer diagnosis. Connecticut data through the BRFSS and Tumor registry sources are being analyzed by Alyson and Katrina. We are looking for disparities in terms of race, ethnicity, geography or other criteria that would help us to focus on specific strategies or interventions.

From Nancy Borstelmann, Yale Program:

Several factors led to the vision to develop an early onset program at Yale. There has not been a focused program for this population (18-49) and faculty, staff, patients, and families expressed keen interest. We had learned that among the cancer patients seen at Yale-Smilow, about 30% of those were early onset cases. Annually (I believe this data is from FY’21), about 3250 new early onset cases presented across the Yale-Smilow network. Yale-Smilow now touches about 50% of the population of CT.  So given the rising incidence in some areas of cancer, the numbers of already existing early onset cases living with cancer, and 16 Yale-Smilow centers across the state, we knew there would be great potential to develop a multi-pronged program that would serve this population.

There was discussion about existing data sources, such as BRFSS,  and the need for prospective collection data.

BRFSS modules overview:

Questions for Cancer Survivorship start on page 79:

Linda Alderman shared this perspective from ACS on survivorship:

ACS survivor views survey program

Survivorship needs

The ACS  data on needs expressed by callers to  the Cancer Information Services 800 line was quite limited in number.(44 calls). It captured the resource category provided to callers, but not the type of need they expressed.

Linda asked if information is available through the Reach to Recovery intake forms. Juana will check on this.

  1. Members briefly described their own institutions’ survivorship programs and support groups.
  • Amber said at Middlesex there is not a specific focus on early onset survivors, but survivorship programs include monthly programs addressing physical and emotional topics as well as complementary health and education topics, and classes such as Tai Chi and yoga. The clinical protocols involve referrals for care outside of oncology, eg PT behavioral health. The nurse navigators provide the survivorship care plan, but there are lots of barriers and it doesn’t seem to be working well, in that non-oncology providers are not using it.
  • Middlesex has some focus groups which rate the physical activity offering highly. Some of the most popular things are one-off offerings like a social gathering to go to the Yard Goats on Survivor Day.
  • Jenna said the situation at Smilow is similar to Middlesex. Sally is one provider who works on the SCP at diagnosis using NCCN standards, but there is nothing specific for younger patients. Yale does have an intimacy clinic for survivors.There is information provided about the late effects of treatment and what to look for in the future. They also have classes that address nutrition, and lymphedema and make referrals. Some materials are available on video on Yale’s YouTube channel. (Topics include, nutrition, sexuality, menopause, exercise, meditation, sleep, superfoods, and holistic coping strategies

Video on survivorship for PCPs.

  • Robin Baker asked if there is some sort of survey at discharge. The response was yes, initially one was done but the return was so poor that it was dropped.
  • Debbie Vincent of Cancer Support Communities said that psychosocial support, up to 6 sessions, mostly virtual is provided as well as support groups. They do have ones specifically for young patients. They have a new cancer transition program for patients 18 – 35.

  • Angelica Katz works mostly with policy issues through Komen and can share resources from Vermont’s workgroups and New Jersey.
  • Nora Brugueras is working on a toolkit for support group formation, addressing how to “change the story.”
  • Fischbach announced that the THRICE Center will open on April 16 in Bridgeport and will be a full-service gym with support groups cooking classes and social opportunities. He will be looking to collect more data on survivor needs at their events.
  1. We are still looking for subject matter experts ( one or two) to take a leadership role in this workgroup. This champion will help guide direction of the group and set direction. I will continue to provide all the email and meeting support.
  2. Please email Lucinda with any info about survivorship programs you’d like to have included in our compilation, and your interest in providing leadership to this workgroup. Feel free to invite interested colleagues to our March 7 meeting.


Below you will see some select survivorship strategies as outlined in the Connecticut Cancer Plan, 2021-2026. This list might help to get the wheels turning as to any specific focus areas/ initiatives you would like to prioritize for our workgroup activities this year.

  • Address psychosocial needs of family caregivers through increased supportive services programming by health and community agencies, including the use of community health workers
  • Address risk factors for cancer survivors to improve quality of life and reduce risk of cancer recurrence or progression.
  • Analyze results of 2020 BRFSS optional Cancer Survivorship module to identify needs.[i]
  • Collaborate with YMCAs across the state to increase participation in the LIVESTRONG at the YMCA program for cancer survivors through increased provider referrals and promotion through survivor support groups.
  • Educate patients on the value of treatment summaries and survivorship care plans.
  • Encourage community-based self-management workshops for cancer survivors, including promotion of physical activity programs, weight management, and healthy eating.
  • Promote systems changes to integrate survivor care plans into systems of care.
  • Provide professional education to providers regarding use of Survivorship Care Plans, including elements such as:

o   psychosocial issues and behavioral counseling interventions, and referrals to behavioral counseling services, the availability of support and survivorship groups, the importance of healthy behaviors and the risks of tobacco and alcohol use affecting reduce cancer recurrence, long-term and late effects of cancer and its treatment on survivors’ physical and psychosocial well-being.

  • Train health systems providers to assess, advise, and refer cancer survivors to physical activity programs and to utilize “exercise prescriptions” to improve fatigue, anxiety, depression, physical function, and quality of life.
  • Work with hospitals, health systems, and cancer centers to establish survivorship priority programs as per CoC guidelines that focus on enhancing survivors’ health and quality of life.

Idea to consider: Having SCP linked to a  QR code ( that could be stored on a smart phone) similar to:

MyQRCode’s Medical Record Access QR Code Generator is designed to enhance the efficiency and security of accessing these vital documents. Healthcare providers and patients can use this tool to generate QR codes that link directly to electronic medical records, ensuring quick and secure retrieval of patient information.

See link:
Medical record access QR Code Generator