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Cancer Survivorship: The Importance of Research

The National Cancer Institute (NCI) held a Facebook live event in late July in which the Director of the NCI’s Office of Cancer Survivorship, Dr. Julia Rowland, Chief Executive Officer of the National Coalition for Cancer Survivorship (NCCS), Shelley Fuld Nasso, and patient advocate Liza Fues, discussed the importance of cancer survivorship research.

Here we provide a recap of the panel discussion:

How do you define the term survivor?

The NCI and NCCS describe a survivor as anyone diagnosed with cancer, from the moment of diagnosis through the remainder of their life. The panelists suggested that each individual should define the cancer experience “by what feels right to you” and noted the term was not accepted by everyone. Survivor was utilized by founding members of the NCCS to change the lexicon from victim; it was not meant to be a label, but to give individuals affected by cancer a sense of hope and a message to be active in their care.

What is survivorship research?

The Office of Cancer Survivorship’s research is focused on individuals living with a history of cancer, those who have completed initial therapy.

What progress has been made in cancer survivorship research?

The panelists noted progress has been made, but that there is a lot of work that still needs to be done. Three lessons learned from the survivor community include:

  • Survivorship is a unique part of the cancer care trajectory and has its own unique set of care needs. It is a period following active cancer treatment that many people have experienced as a black hole.
  • Cancer is not “over” when treatment is over. The effects of cancer and cancer treatments can have persistent effects (e.g., physical, psychological, social, financial).
  • Planning for survivorship (including healthy living behaviors) should be incorporated throughout the treatment phase.

Looking ahead, where is the focus going to be in research?

Dr. Rowland noted four main areas that are currently and will soon be seeing more attention:

  • Care Planning
  • Financial Toxicity (e.g., the financial cost impact of cancer)
  • Caregivers
  • Health Promotion

Advice for patients:

  • Learn as much as you can and stay current
  • As a survivor, you have an important role in engaging in health after treatment; learn what you need to know about effects of treatment and if you don’t have a Survivorship Care Plan, ask your provider for one.

To learn more about the Survivorship Care Plan (which includes a cumulative Treatment Summary and personalized Long-Term Follow-Up Care Plan) and care offered by our program, click here or email us at ayaprogram@tuftsmedicalcenter.org.


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