Scanxiety, Forever Changed
I hope you never hear the words that I heard. But if you do, I hope my story will bring you strength, courage, and hope. Here’s what happened to me.
Unexpectedly, I began to have rectal bleeding. It was constant and consistent. My annual physical was scheduled just two weeks after I began to bleed. I was concerned, so I immediately told my primary care physician about my bleeding for the last two weeks.
He looked over my lab report. He said, “You’re not anemic. It’s probably hemorrhoids.”
Long story short, he reluctantly referred me to the board-certified colorectal surgeon that I wanted to see. I had to wait six weeks before they had an opening, and my first appointment was with his physician’s assistant. That long wait was torturous for me because the bleeding continued every day.
My appointment day finally arrived. My husband accompanied me because he knew that I was anxious. We were called back, and the PA asked me to tell her what had prompted my visit. I described my bleeding, and I told her that I had a benign rectal polyp 15 years before. She asked if she could do a flexible sig exam, and I consented.
My husband went with me to the procedure room. We were not prepared for what she told us, “You have a rectal tumor. I’ve already given our surgeon a heads-up that we need to do a colonoscopy ASAP. Be expecting cancer.”
Three days later, I had a colonoscopy. The biopsy of the tumor showed cancer. The surgeon explained to us that he was ordering a CT scan of my chest, abdomen, and pelvic and a rectal MRI.
My husband asked why I had to have so many scans. The surgeon said, “To learn more about the tumor size, if lymph nodes are involved, and if her cancer has spread.”
I was about to enter the unknown world of cancer treatment and experience scanxiety for the first time. And I learned that when it comes to cancer, there is no modesty.
What is Scanxiety?
Scanxiety is the worry, angst, and apprehension over getting a medical test or imaging procedure, like CT or PET scans or an MRI (magnetic resonance imaging).
Cancer patients quickly learn that life-or-death decisions hinge on the results of our scans. Here are some examples:
Staging scans — the scans when diagnosed to see if our cancer has spread to distant parts of our body.
Response-to-treatment — the scans during treatment to see if our tumor responds to chemotherapy, immunotherapy, targeted therapy, or radiation.
Follow-up after treatment — the scans after our treatment ends to make sure our cancer has not come back (recurred).
Second Meeting with Surgeon
We met again to learn the results of my tests. Waiting for this appointment was sheer agony. My husband and I decided in advance that we would go out to lunch after this appointment. Why? So that we could sit down in a neutral location and “digest” the news over coffee and a nice lunch.
Appointment time is here and in comes the surgeon. He greets us warmly and asks how we are? It’s just a bit of chit-chat.
Then he says, “I’m going to cut to the chase. The CT scans show that your cancer has spread to your lungs.”
My heart sinks — stage IV. The scans showed 3 nodules in my right lung.
Then he says, “You have two choices. Call hospice or fight.”
And without hesitation, I replied, “I’ll fight.”
There was no way that I was going down without a fight. I felt fine, with no pain or discomfort, and my lab results were all normal.
He helped us decide on an oncologist, and he explained that most patients have chemotherapy first to help shrink the tumor so that their surgery will be less complicated.
8 Days Later
We meet the oncologist for the first time. She became a ray of sunshine — always upbeat, smiling, and compassionate. My husband suggested that I get a copy of my CT scans to bring with us if she wanted to see the actual images.
As we talked, she said, “I wish that I could see the actual lung scan for myself.” And I pulled the disk out of my purse. She took the disk and told us that she’d be back in a few minutes. She returned with a smile on her face and said, “I disagree with the radiologist. I believe that only the largest of the three nodules is cancerous. The other two are probably scar tissue from a previous infection. If we are aggressive, we might be able to cure you.”
My husband told me later that he could see me relax when she said those words. HOPE — yes, that is what she gave me. And I said, “Sign me up.”
She laid out an initial treatment plan and told me that she would rescan me after five cycles of chemo. If my tumor shrank by about 20 %, she’d take my case to the tumor committee. Although the thought of strong chemo scared me, I was ready.
Chemo was not as bad as I thought. Scans after 5 cycles showed that my tumor was shrinking, so my case went to the tumor committee. The radiation oncologist recommended SBRT (stereotactic body radiotherapy) for the tumor in my lung and pelvic radiation to help prevent a recurrence. At the meeting, my surgeon believed that surgery after radiation might be “potentially curative.”
And so we followed the recommendations. Step-by-step, inch-by-inch, and day-by-day, we followed the pathway. After surgery, I did six more cycles of mop-up chemo to help prevent a recurrence.
No Evidence of Disease (NED)
These words — no evidence of disease — are the words that every cancer patient yearns to hear. It’s been six years, and I have scans every six months. Fortunately, I continue to remain NED.
I tell myself, “I can’t change the results. I’ll deal with whatever comes.”
That’s all that any of us can do. With our family, friends, and faith, cancer survivors not only survive, but we learn to thrive.