Ramblings @ Survivorship & An Invitation to Participate in Survivor Research

For the past 20 to 25 years, many in the oncology community, along with their patients, have attempted to describe the stages that cancer survivors typically experience. Most break it down into some version of the three stages outlined below:

Living with cancer refers to the experience of receiving a cancer diagnosis and any treatment that may follow. During this time, patients will undergo various kinds of treatment and may be asked to join a clinical trial to study new cancer therapies. During this treatment phase, patients and their caregivers may be offered services to help cope with emotional, psychological and financial concerns.

Living through cancer is the post-treatment period in which the risk of cancer recurring is relatively high. Many patients are relieved that treatment is over, but anxious about no longer seeing their cancer doctor on a regular basis. During this stage, patients typically see their cancer doctor two to four times a year depending on their circumstances.

Living beyond cancer refers to long-term survivorship. While two out of three survivors say their lives return to normal, one-third report continuing physical, psychosocial or financial consequences. During this stage, most survivors go back to the care of their primary physician with a long-term health care plan developed by the oncologist.

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The good news – with ongoing research and medical advances, people are living longer after a cancer diagnosis.  In fact, nearly 12 million Americans are alive today after being told they have cancer.  With so many patients ultimately living beyond cancer, the issue of survivorship is becoming more and more of a critical and well-researched issue. 

Cancer survivors often face physical, emotional, social, and financial challenges as a result of their cancer diagnosis and treatment. Cancer treatment centers and public health professionals are striving to address survivorship and quality of life issues that might impact the long-term cancer survivor – effective follow-up care, behavioral risk for recurrence, ongoing coordinated care, patient-provider communications, support services, etc.  In light of these concerns, the oncology community continues to research the long-term effects of treatment, and helping survivors understand healthy behaviors that might prevent recurrence. 

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I remain marveled at the broad networking opportunities created through the power of social media.  As family and friends know, I started this blog to communicate timely medical updates without having to fuss with countless telephone calls or emails.  In the meantime, this blog has taken on a life of its own for me - somewhat of a journal about my journey.  It also seems that friends have passed along this blog to many others – not just in Arkansas but all around the country, and even a few foreign counties too.  The highest complement - being named one of the top ten cancer blogs by BlogHer Publishing Network.  I admit that it means much to know others are finding help and hope through the writings of this blog.  

With that said, this past week I received a message from the Director of Stanford University’s Patient Education Research Center, who has asked me to post information about an online research project for two-time cancer survivors.

Here are the facts:  Stanford is conducting a 6-week online workshop giving people who have survived cancer 2 or more times the skills needed to regain their life back and take control of their health after cancer.  It appears to be an enriching workshop that only requires 2 to 3 hours a week.  Participants will also connect with other cancer survivors. Go to http://cancersurvivors.stanford.edu/ to learn more and sign up.

Participating in research is exciting.  I’m participating in two research projects – one about Inflammatory Breast Cancer and the other about lymphedema.  More and more people with medical problems are actively seeking to participate in research studies.  If you qualify as a two-time cancer survivor, I would encourage you to participate in this study.  Or, consider passing along this information to a friend or family member who might qualify.  It is through research like this that we might realize a world without cancer.