Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Life Motivation, living with chronic illness

The Benefits and Pitfalls of Having a Prognosis

It shouldn’t be a surprise that after you receive a diagnosis of a chronic or life-threatening illness the recommendation is to get as much information is possible. It’s easy to research an illness in our age of technology. In addition, many of those diagnosed with a particular illness have founded organizations to support those with that diagnosis with the intention of providing information and support.

The idea of getting information and meeting with your doctor is part of the pilgrimage to health and healing. Is information-seeking behavior a Western society cultural phenomenon? I’ve read many accounts about Asian cultures who don’t share the diagnosis of cancer with the patient. It’s a way of protecting the patient from weight of the diagnosis. In this case, the patient isn’t given the choice; it’s hard to fight cultural norms.

One of the things most people want to know about is the prognosis. We’re conditioned to want the know about the outcome before we’ve even started treatment. A prognosis is a number. It’s a guess, an estimation, based on past anecdotal and research metrics. The prognosis for some is a saving grace because the odds are in their favor and a curse for some because the numbers don’t favor their survival.

I watched an interview on Good Morning America with Stuart Scott from ESPN. Scott was diagnosed with cancer. He tried to create as “normal” a life as possible but he was in for a huge surprise. Two years after his first diagnosis and treatment, he was given another cancer diagnosis. He told Robin Roberts that he did something very different after the second diagnosis; he chose not to know the prognosis.

Scott explained that the decision about self-preservation. He didn’t want the prognosis because he didn’t want to be frightened. He’s sharing his belief that knowing the prognosis could possibly bias his body, mind, and spirit connection as he devoted his whole being to health and healing.

We know there are no guarantees that we’ll all live long lives. The prognosis is like playing the odds in Vegas. How would you bet if you saw the odds on the board at the casino based on your prognosis? Do you go for the favorite, or the long shot? Are you optimistic or pessimistic? How does knowing the prognosis impact your motivation, perseverance, and will?

One of the key points that Scott made during his interview was his personal belief that there’s a difference between being alive and living. He believed that knowing the prognosis would impede his desire and ability to live. He didn’t want to simply be alive; he wanted to give his all to his family, his work, and himself. His desire to continue living life to the fullest was as much a part of his treatment as any medication given by the doctors

Do you thrive or dive with too much information? When is too much information a help or hindrance? What would you do differently with your life if you were given the prognosis, good or bad?

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Posted in newly diagnosed illness

Pay Attention to Demographics

On Tuesday the Wall Street Journal (WSJ) had an article about Imerman Angels ( , a Chicago based organization that pairs a mentor with a newly diagnosed person with cancer.  The organization matches the mentor and the newly diagnosed patient based on as many parameters as possible, but most importantly age and type of cancer.  The implementation of a mentor program is critical when you consider the way healthcare has changed.  Yes, technology and research have increased the treatment options and prognosis for patients so now it’s time to pay attention to the person with the diagnosis; their emotional, spiritual and even their practical questions about living with the disease.

The startling part of the article was about survival rates, “…cancer survival among patients ages 25 to 35 hasn’t improved since 1975, according to the National Cancer Institute.  Some cancers are less responsive to treatment in young adults than in other age groups.  But those patients may be less likely to seek immediate help for symptoms, resulting in a delayed diagnosis, and they often lack insurance.”  This is both sad and disturbing.  I understand it developmentally; young people don’t believe they’re going to die so a symptom is something stupid that will go away.  Unfortunately the other part of the equation, lack of health insurance is an obstacle that has to be addressed.  If survival rates haven’t improved for this age group in 34 years then we’ve got a lot to do to change how things are being done.

No matter your diagnosis, finding someone who has blazed the trail is enormously helpful.  Having a go-to person who can let you know about the bumps in the road before they happen is a gift of tremendous proportion.  Most importantly, having someone who is living proof of what life can be like after your diagnosis provides hope, reduces isolation, and gives you the strength to make the tough choices that come with any diagnosis.  Look for a mentor by contacting the nonprofit organization either on the local or national level that represents those with your diagnosis.