Rapid advances in our understanding and treatment of cancers mean more people than ever are surviving the disease.
Almost 15.5 million1 people in the US have a history of cancer, with 67 percent diagnosed more than five years ago. But few have come through the experience unscathed.
From the late effects of treatment to the risk of recurrence, cancer survivors have a lot to contend with – but with the right support, there’s no reason they can’t live well after cancer.
Here are our top five considerations for patient advocacy groups and healthcare organizations looking to develop survivorship programs.
Identifying unmet need
With so many different types of cancer affecting so many different individuals, there is no one-size-fits-all approach to supporting survivorship. The key to identifying unmet need and providing valuable support is co-creation.
In the UK, the Newcastle upon Tyne Hospitals NHS Foundation Trust has developed a prostate cancer survivorship program2. The content and delivery method were developed with the input of a steering committee that included patients and GPs. This ensured unmet needs were identified and addressed, and that everyone’s views were taken into consideration.
While cancer treatment has advanced considerably, today’s survivors are often still faced with a variety of physical and emotional effects. After prostate cancer, for example, men may experience erectile dysfunction or incontinence, while young people treated for hematological cancers can face the possibilities of infertility or premature aging.
With this in mind, helping people to understand and deal with such issues can enhance quality of life, according to the International Myeloma Foundation Nurse Leadership Board (NLB) Survivorship Care Guidelines for Patients Living with Multiple Myeloma3.
Through surveys and face-to-face discussions, the NLB identified a number of areas of concern among survivors, including health maintenance and sexual function. This allowed the development of evidence-based resources to be distributed to patients and healthcare professionals via local and regional meetings.
Supporting healthy minds
While most survivors will, with time, return to their former lives, many will experience some degree of mental health distress. They may suffer from depression and anxiety, post-traumatic stress disorder, or live with the fear of the disease coming back.
An article in the New England Journal of Medicine4 at the end of last year calls for healthcare professionals to screen cancer survivors for distress and refer on if necessary.
Advocacy groups can also play a role in supporting healthy minds by providing evidence-based advice, support and signposting.
Supporting healthy lifestyle choices
There’s a growing body of evidence that adopting healthy behaviors is linked to better outcomes for cancer survivors. Survivorship guidelines exist for smoking cessation, alcohol consumption, a balanced diet and exercise, and could be a valuable resource.
However, while surveys suggest few cancer survivors are meeting these guidelines, qualitative data reveal a cancer diagnosis may motivate people toward changing their behavior and that survivors are keen to receive advice on living a healthy lifestyle, according to a paper in the British Medical Journal5.
Ideally, that information should be provided by a credible source and come with behavior change support.
Living with metastatic cancer
While there has been a move towards providing services for people living beyond cancer of late, those living with cancer can often feel ignored.
Terry Langbaum, administrative director at Johns Hopkins Comprehensive Transplant Center, and Dr Thomas Smith, professor of oncology and palliative care at the Johns Hopkins University School of Medicine, are both living with metastatic cancer. They spoke about their experiences in the New England Journal of Medicine6.
One of the most troubling aspects of living with an incurable cancer, they say, is the loss of control, making it imperative that patients be invited to participate in their own care. Survivorship programs are perfectly placed to provide the education people need to participate in shared decision making.
The pair also suggest other strategies that could help ease the journey. These include adopting and adapting coping mechanisms used in other chronic, life-shortening conditions, as well as offering therapy and coordinating care management among primary care, oncology, and palliative care professionals to improve the patient experience.
- Alfano, C. M., Leach, C. R., Smith, T. G., Miller, K. D., Alcaraz, K. I., Cannady, R. S., Wender, R. C. and Brawley, O. W. (2019), Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy. CA A Cancer J Clin, 69: 35-49. doi:3322/caac.21548
- Prostate Cancer UK. Creating and effective prostate cancer survivorship programme https://prostatecanceruk.org/for-health-professionals/our-work-with-trusts/newcastle
- International Myeloma Foundation Nurse Leadership Board (NLB) Survivorship Care Guidelines for Patients Living with Multiple Myeloma https://www.myeloma.org/sites/default/files/2019-01/NLB_2011_CJON_SurvivorshipCareGuidelines.pdf
- Shapiro CL Cancer Survivorship N Engl J Med 2018; 379:2438-2450
DOI: 10.1056/NEJMra1712502 (abstract) https://www.nejm.org/doi/full/10.1056/NEJMra1712502
- KoutoukidisDA, Lopes S, Fisher A, et al. Lifestyle advice to cancer survivors: a qualitative study on the perspectives of health professionals. BMJ Open 2018;8:e020313. doi: 10.1136/bmjopen-2017-020313
- Langbaum T and TJ Smith Time to Study Metastatic Cancer Survivorship N Engl J Med 2019; 380:1300-1302. DOI: 10.1056/NEJMp1901103