This is a common question that pops up in our kidney cancer communities. And it’s not surprising. Seventy-five percent of kidney cancer patients will be diagnosed with localized disease.
The majority of these patients are “cured” by surgery, however between 20 and 40 percent will experience a recurrence of their cancer. Following surgery, many patients struggle with how to describe this situation to friends and family.
Am I cured? Am I in remission?
We don’t really have a word to describe the reality of cancer patients who are free of disease but are living with Fear of Cancer Recurrence (FCR).
Some patients who are free of disease following surgery for kidney cancer use terms like:
NED – No Evidence of Disease: which means that there is no visible evidence of cancer in the body. However, there is still a possibility of recurrence (which may be low, intermediate or high depending on the exact diagnosis).
Complete Remission – Just like NED – complete remission means that based on scans and available tests, there are no signs of cancer in the body.
But these terms can be confusing to friends and family who aren’t familiar with cancer. They may wonder why someone didn’t need chemotherapy or radiation following their surgery.
They might say things like, “why didn’t you lose your hair?” They also might say things like, “I guess you’re lucky!” or “why are you still worried?”
Comments like these can be hurtful to a patient who is living with Fear of Cancer Recurrence (FCR); Especially when they are coming from trusted friends and family members.
That is why we encourage patients to connect with one another through on-line communities. Knowing that you aren’t alone in the way you feel is the first step in acknowledging the anxiety caused by cancer. And acknowledgement is the first step in moving forward and learning to live with a cancer diagnosis.
Sharing your story not only helps you – it will benefit others. Research suggests that helping others can help us regulate our own emotions and decrease symptoms of depression.
Our communities are designed to foster this circle of support. Each new patient that comes in gets the support they need and becomes empowered to advocate for themselves and inspire others.
Everyone is unique in how they manage a diagnosis and describe their own situation. You may feel comfortable saying, “I’m cured!” or you may prefer a term like “NED” or “complete remission.” Perhaps you like the word “survivor.” While we might not have the perfect term to tell your friends and family; what matters to us is that you know this:
With KCCure – You Are Not Alone!