June 2 is National Cancer Survivors’ Day.
I was diagnosed with chronic myeloid leukemia in October 1999. I received a bone marrow transplant the following March. While on my journey, which included a diagnosis of thyroid cancer in 2010, I learned a few things about living with cancer – the most important of which was finding your new normal.
Nationally, there are more than 12 million people living with a diagnosis of cancer. The Vermont Department of Health estimates that more than 30,000 Vermonters are currently living with cancer.
There are many challenges that a cancer patient faces. Besides being at risk for recurrence of cancer and for developing new cancers, we may face psychological distress, sexual dysfunction, infertility, impaired organ function, cosmetic changes and limitations in mobility and cognition. Treatments that prolong life, even cure certain cancers, may also cause serious and sometimes long-term problems. Half of adult cancer patients and survivors report substantial disabilities at some point in their treatment, recovery, or survivorship. Nearly 75 percent experience depression; and up to 90 percent suffer from fatigue. Often, we will also contend with emotional and financial issues as we live with and beyond their diagnosis.
So how do you find a new normal?
The Vermont Cancer Survivor Community Study (CSCS), an NCI-funded research program completed by the University of Vermont, worked with cancer centers in four Vermont counties to establish a Cancer Survivor Registry. Those who signed up for the registry were asked to complete a survey on their needs since their diagnosis and whether those needs were met.
The top unmet needs reported were:
- Need for help reducing stress in your life;
- Need for more information about after effects;
- Need for help finding ways to reduce your worrying;
- Need for help managing your concerns about your cancer coming back; and
- Need for help dealing with the impact of cancer on your relationship with your partner.
I received the best medical treatment to deal with my cancers; yet, there is more than treatment for someone on the cancer journey. As a breast cancer survivor told me, “You come out of treatment and everybody says – ‘OK, you’re OK now, and you can get back to your life’ – but, you are different from how you went in. You just don’t feel like the same person. They tell you it’s over, but it just doesn’t feel over.”
One way to manage this concern is to have a Survivorship Care Plan. This is a document completed by your oncology team at the end of treatment. It lists your treatment, follow-up appointments, things to watch for, potential after effects, and resources for different needs. It will become mandatory at all American College of Surgeons Commission on Cancer Centers in 2015.
Closer to home, the Vermont Cancer Survivor Network (VCSN) working with the Vermont Department of Health completed a Cancer Survivor Focus Group study in 2006 which indicated a high need for support – to be able to talk to “someone who has been there.” In response, VCSN created the “Kindred Connections” program, which trains cancer survivors to become mentors for others experiencing a similar cancer journey.
So how am I surviving cancer in Vermont? With my Survivorship Care Plan, a mentor on the same journey as me, and the love and support of my family and friends. For me, the new normal is a better normal: I live each day with a new awareness of life.
Read about the role of exercise in cancer rehabilitation in the blog post “Steps to Wellness: Oncology & Hematology Rehabilitation at the University of Vermont Medical Center and the Vermont Cancer Center.”
David Cranmer is the co-founder and president of the Vermont Cancer Survivor Network and the coordinator for Vermonters Taking Action Against Cancer. He is a co-author of “Are Cancer Survivors Willing to Participate in Research?” (J Community Health, 2011) and “What do Cancer Survivors Need? A Community-based Study” (J Family Practice, 2013). He is the author of several articles on cancer survivorship needs and has been a presenter at local, regional and national conferences.