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Providing AYAs with tools for self-advocacy


Advocating For Your Long-Term Follow-Up Care

Dr. Parsons and Program Manager, Rachel, share advocacy tools at Cancer Con 2018.Last April, Stupid Cancer’s annual Cancer Con brought over 600 Adolescent & Young Adult (AYAs) cancer patients/survivors together for a weekend filled with informational sessions and new connections, in Denver, Colorado. Our Medical Director, Dr. Parsons, and our Program Manager, Rachel, (photo at right) attended the conference as speakers, leading a session titled “Advocating for Your Long Term Follow-Up Care.” The conference provides a wonderful opportunity to share survivorship care insights and tools provided at the Reid R. Sacco AYA Cancer Program at Tufts Medical Center, with AYAs from across the country.

One message shared was that surveillance alone is Not survivorship care. The components of survivorship care (as outlined in the 2006 Institute of Medicine report, “From Cancer Patient to Cancer Survivor: Lost in Transition”) include: 1) Surveillance for cancer spread, recurrence or second cancers; 2) Intervention for consequences of cancer and its treatment; 3) Prevention & Detection of new or recurrent cancers and other late effects; 4) Care coordination among specialists and primary care to ensure all health needs are met.

Attendees of the session were asked to raise their hand if they had a Survivorship Care Plan (a cumulative Treatment Summary and long term Follow-Up Care Plan); noting that only two individuals raised their hand highlighted the importance of the talk.

In addition to discussing what information is included in a Survivorship Care Plan, Dr. Parsons and Rachel shared what AYAs and their caregivers can do in terms of prevention and surveillance (e.g., smoking cessation, avoiding inactivity, protecting your skin, staying up to date with vaccinations, scheduling appointments and going if something feels wrong). They also spoke about the ideal model of care which includes a partnership between the primary oncologist (for those AYAs still in surveillance), the primary care provider (for general wellness) and a survivorship specialist.

The session closed with questions AYAs can ask their oncologist regarding survivorship care

  • Who will provide me with survivorship care (plan)?
  • How might my cancer and/or treatment impact my future health?
  • What specialty appointments or tests should I have?

And suggested AYAs practice an “elevator speech” about their diagnosis and treatment story as different providers may need to know more or less about your medical history.

Whether you have recently completed treatment, or have been lost to follow-up care following the end of treatment, the survivorship specialists at Tufts Medical Center will provide a personalized Survivorship Care Plan, based on your medical history. To learn more, please call 617-636-5168.