Receiving a diagnosis of NED (no evidence of disease) is reason for celebration!
Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.
Visiting the oncologist every three months has been routine for me since 2014. It’s been challenging but necessary. No matter how many times I’ve been, I always get butterflies in my stomach before walking into the waiting room. On this day, I mentally brace myself for what I might hear. When my name is called, I steel myself and follow the assistant into the exam room. She offers pleasantries and obtains my vital signs charting them before heading out the door. In a few short minutes, I hear a gentle tapping. The doctor opens the door and stands before me. He asks how I’m doing, and I respond that I’m doing well. He reviews my list of medications and asks if I need refills. After we get that out of the way, I hop up on the exam table. The doc listens to my lungs and heart then asks me to lie down as he palpates my abdomen. While he works, he continually asks if it hurts. I respond with a happy no. With the exam finally over, I feel relief.
Before the doctor exits, my husband, usually very quiet and reserved, interjects, “Doctor, is my wife cancer-free now?” Instantly the room is silent. With a terror-stricken face, I turn to look into the doctor’s big brown eyes. I don’t know what I expect him to say but I’m hanging on the edge of my seat waiting. He begins, “Actually, as far as we can tell, without the use of any medical tests or scans, your wife is currently presenting no evidence of active disease in her body.”
Did I just hear him say what I thought he said? Did I just hear my doctor admit that I was NED?!? I turned to look at my husband and he looked at me. We couldn’t believe what we were hearing. We both looked at the doctor as he had turned to leave the room. I wanted to cry out, “But wait! I have questions,” but I didn’t. My husband and I sat quietly in the room. All of a sudden, tears welled up in my eyes. My husband's eyes filled with tears, too. We embraced each other and thanked God for this good news. As we walked out of the exam room, I wondered why the doctor didn’t make a bigger deal of my NED status. It was a really, really big deal to me.
For almost three years, I’d waited to hear the doctor say I was NED. Many of my breast cancer friends had received NED diagnoses before me, and I was a little jealous. I was happy for them but wanted my own good news. I knew I wouldn’t hear the words “cancer-free” for a long time, but I had hoped to at least hear the word “remission” or something. I was still under the ominous five-year recurrence mark, so I didn’t even think about asking my doctor the big question until I’d passed that milestone; but I was so happy my husband had been bold enough to ask.
On our way home, I explained to my husband medical journals and articles I've read say NED may be temporary, or it could be permanent. They also indicate the term no evidence of disease (NED) does not mean the disease has been cured since a recurrence can't entirely be ruled out. To be classified as NED means there is no evidence of any cancer present that can be detected by tests such as blood tumor markers, CT, MRI, bone or PET scans. My husband asked why the doctor didn't just say I was cured. I told him doctors rarely use the term "cured” even if there is a good chance the cancer will not recur. There's no way to know whether tiny malignant cells are floating around in your body and some are too small to show up on imaging tests.
Being with NED can be a scary place. When you're in active treatment, doctors are constantly checking on you. They run bloodwork and do tests. They are always watching for signs of recurrence. Friends and family are close and tend to be interested in your health. Sometimes, as a person reaches NED, they don’t know how to cope and some will even get depressed. On top of that, the majority of people are dealing with some side effect from the treatment it took to get to NED status. Symptoms like fatigue, pain and hot flashes can linger long past treatment. The fear of cancer recurrence can sneak in and can be overwhelming. Life is different after cancer. It's normal to be on guard and constantly looking, waiting, watching for any sign of possible recurrence.
It’s hard to know how to transition from active cancer treatment to NED status. How do you shift back into normal life? It's especially hard if you’ve spend a long time focusing on all things cancer-related. You’ve bounced from one doctor to another and have felt like a human guinea pig having test after test. You may wonder why you aren't scheduled for regular imaging any longer, but don’t worry. Even if your doctor has given you a NED status, he or she will still keep an eye on you. Your appointments will probably be spread further out than they used to be and you might even feel like the security net once underneath you has been removed. It will take some time to move into the next phase of your life, but there are things you can do. Learn to enjoy a healthy lifestyle. Enjoy some form of exercise daily, eat a healthy diet filled with lots of fruits and vegetables and get plenty of quality sleep. Do the things you love. Spend time with family and friends. Find ways to eliminate stress in your life. Celebrate the absence of cancer and do a little dance with NED – after all, you deserve it.