Still NED and Doing Fine: "Cancer Free" Is a Misleading Phrase

Patient Expert

A heart-warming series of commercials currently running on television shows factory workers wishing they could meet the cancer survivors whose lives have been saved by the technology they build.   My favorite part of these commercials is the survivor who says that she now has "no evidence of disease."   She does not utter the over-used and misleading term "cancer-free."   The problem with the term "cancer-free" is that generally speaking no one knows if a cancer survivor is cancer free until he or she dies of something else.

Cancer cells can be stubborn critters hiding in our bodies waiting for just the right moment to start growing again, even years later.   The current wave of news stories proclaiming that a woman who finished breast cancer treatment last week is now "cancer free" leads to a misperception of what a cancer survivor's life is like.   I know quite a few women whose friends and families don't understand why they don't just put cancer behind them and "move on."

My life this fall may help explain why "cancer free" and "moving on" just don't fit many cancer survivors' experiences.

It started with pain in my shoulder and collarbone on the same side as my radical mastectomy and lymphedema.   When it didn't get better, I saw my primary care doctor, who ordered an X-ray and ultrasound to find out what was going on.     She referred me to a sports medicine doctor on the assumption that the pain is muscle/skeletal in origin.   The new doctor diagnosed bursitis in the shoulder, but seemed confused about the collarbone pain.   He thought swelling from my lymphedema might be causing the problem, but it seemed pretty clear from our conversation that he doesn't treat many women who have had radical mastectomies and the chronic problems they can cause.

The following month was time for my annual oncology appointment.   Yes, 13 years after diagnosis, some cancer survivors still see an oncologist depending on how aggressive their cancer was and their chance of recurrence.   I was hoping that my oncologist would have seen enough post-mastectomy patients to have more insight into what to do about my pain.   I was surprised when his immediate reaction was to order a CT scan and a bone scan.   When I mentioned some concentration and memory problems that have gotten worse recently, he threw in an order for a brain MRI.

I was a bit disconcerted that 13 years out from diagnosis, he was looking for metastasized cancer in my bones and brain.   I went for the bone scan and CT scan the same day.   I always ask to see the results of the bone scan.   I know where my bones light up from arthritis, but this time I could see a bright spot on my shoulder blade that I didn't remember from my last bone scan.   I wasn't too worried about it though-probably just some new arthritis I thought.

However, the radiologist who read the bone scan found the new spot "worrisome for bone metastasis."   Even more concerning was the chest CT showing a small nodule near my lung that had never shown up on any previous tests.   The radiologists and my oncologist agreed that a PET scan was a good idea to see if either of these new places were cancer.     A flurry of calls back and forth from my various doctors ensued to explain the findings and schedule new tests and appointments.   Many of these interrupted my work day, necessitating time out of class, sometimes even stepping away from my class, an event teachers avoid whenever possible.   But patients talk to doctors on the doctors' schedule, not the patients'.

One bright moment in all of this was the call that the brain MRI showed I have a "normal brain."

I have never had a PET scan.   They weren't widely used when I was in treatment in 1998.   The test itself was easier than I was expecting.   I spent an excruciating weekend worrying about what the test would show.   In my gut I was feeling pretty good about the bone spot.   It seemed so likely to be some sort of aging issue.   That nodule near my lung really worried me, however.   I've never had anything like that before.

The report, however, was "inconclusive."   With an inconclusive PET scan, the only way to know for sure what these spots are is to do biopsies.   The oncologist and radiologist agreed that the nodule was too hard to reach to biopsy easily.   The oncologist thought a biopsy of the spot on my shoulder blade would be a good idea, so all my anxiety moved on down the road to scheduling a biopsy.   The radiologist who would do the procedure, however, decided that a biopsy is not the best course of action at this time.   He recommended repeating all the previous tests in three months.

A referral to my lymphedema therapist for physical therapy for the collarbone and shoulder pain probably should have been our first stop.   Yes, she sees plenty of post-mastectomy patients with problems like mine, and she has a plan of therapy to make it better.   Of course, she can't help with the chest nodule, and she doesn't have any insights into why it would hurt low on the shoulder blade where the bone scan lights up.

So don't ask me to make you feel good this Christmas by reassuring you that I am "cancer free."   For years my signature block in my on-line support group has included the phrase, "Now NED and doing fine."   I'm continuing to say there is no evidence of disease (NED), and I am still doing fine.   If future tests prove me wrong, I'll deal with it then.   I'm looking forward to a great Christmas with my family.

If your family is pushing you to move past cancer faster than you are ready, feel free to share this post with them to explain some of the long-term issues you face.   If someone you love is still afraid a year or two or five after cancer, that fear is really normal and is reality based.

In future articles, I'll explain more about some of the most common imaging tests doctors use to check for metastases in cancer survivors.   Most of them aren't nearly as scary as they sound, and we cancer survivors can use any information that reduces fear.   Maybe no one can prove you are cancer free, but NED is pretty close.