Today I had my annual checkup at the cancer treatment center. I’d prepared for the visit for several days and was anxiously awaiting some good news. I had an idea how the visit would happen but wasn’t prepared for how I felt afterward.
Visits to the cancer treatment center have been pretty routine for me for the past seven or more years. I go in for my appointment, have routine bloodwork and vital statistics done, then meet with the doctor for a brief discussion. After those visits, I walked away thankful and waited for a new appointment notice to appear on my online chart about a year later when the process would start all over again.
But today was different. I felt conflicted as soon as I arrived at the treatment facility. As I went to check in, I noticed several people in ill health. There was an elderly woman in a wheelchair. She sat in the corner looking exhausted. Next to her was a middle-aged man, shirt unbuttoned halfway revealing a newly installed port. My heart went out to them. I wanted to apologize for being there and being healthy.
When my name was called by the lab, I walked across the hall for the blood draw. The nurse knew I had a handstick because of bilateral lymphedema and pulled out a butterfly needle and two vacutainer tubes. She asked if I thought I could help her with the blood draw. I smiled. I knew what she was asking even before she asked. She didn’t want me to help execute the draw, but she did need assistance. I said, “Do you want me to help pop the tubes?” She looked amazed and said, “Yes!” Then she asked if I had medical experience. I told her I did but not in the way she must have meant. Explaining, I told her I’d helped pop tubes for many nurses over the years. She remarked that it was impressive and said she’d asked other medical staff to help her only to find they had no idea what popping tubes meant. At that, she’d explain it meant to remove and immediately replace a filled blood collection vial with an empty one.
After the draw was complete, she sent me on my way to the next office. There I had my temperature, blood pressure and weight checked. When those were recorded, I waited to see the oncologist.
But I didn’t get to see the oncologist, instead I saw a nurse practitioner. She went over my bloodwork, asked the typical questions about any health issues that may have arisen since my last visit and was about to send me on my way when I asked what my tumor marker showed.
She looked at the paperwork in front of her and told me one hadn’t been requested. I was shocked. Asking when the last one had been performed, she flipped through my chart and said two years ago. That concerned me. I felt one should be done at every annual visit and voiced that.
I was surprised she didn’t react in any way. Instead, she asked if there was anything else I needed to talk about and I said, “Yes. Do I really need to keep coming every year? When can I be done with this?” She looked at me quizzically and explained I’d need to come every year for the rest of my life. That wasn’t what I expected to hear.
On my way home, I talked with my husband. I said, “After 10 years, don’t you think I’m cancer free?” He replied yes and asked what I thought. I said I certainly felt cured and free of all cancer but without a tumor marker test, couldn’t be positively sure.
All the way home, I was flustered. I’d been going to an oncologist for almost 10 years and hadn’t been under active treatment for nine of those years. I wondered why I’d never heard, “You’re cured!” Instead, I’d only been told once in all those years there was no evidence of disease (N.E.D).
Remission, N.E.D, cured. What’s the difference between them? From what I’ve read, remission means there’s no active sign of cancer and that treatment is or has worked. N.E.D. meant basically the same thing, although there could be cancer cells swimming around in the body somewhere but cured meant exactly that — total eradication of the cancer cells and no chance of it ever coming back.
I guess doctors like to play it safe by telling patients they’re in remission or have no evidence of disease, but what we would really like to hear is that we’re cured. Of course, no one can truly guarantee that perhaps another form of cancer might enter a person’s life in the future, but good grief. After 10 years of no cancer activity, wouldn’t it make more sense to shift me into survivorship care or something?
I did call the cancer treatment center when I got home and talked to a staff member there who was going to bring my concerns to management. Hopefully, I’ll get released from my current doctor’s care and put into a program of surveillance geared toward folks who’ve fought cancer and won.
Once a year still seems like an unnecessary bother to me, but I’m willing to do it if a tumor marker test is performed. That way, I can feel proactive in knowing what’s truly going on in my body instead of enduring routine tests for the heck of it.
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