In September, a year from the original diagnosis, it was time for another CT scan. As usual, I requested and received a CD of the images immediately after the procedure, then obsessively checked the patient portal for news of the written report. It was available just three days later.
When Patrick called me from work that day, I checked the portal while on the phone with him. It was available! I let him know it was there.
Me: It's here!
Him: You gonna read it?
Me: I'm chicken.
Him: Email it to me, and I will read it to you.
Me: Yeah, no. I will read it to you.
Dictated at < redacted > Hospital Medical Center
HISTORY: FOLLOW UP COLON CANCER.
FINDINGS: Interval increase in size of right lower lobe pulmonary nodule, which now measures 11 mm (series 4, image 43). Interval increase in size of additional right lower lobe pulmonary nodule... Interval increase in size of more superiorly located right lower lobe pulmonary nodules... Interval development of left upper lobe pulmonary nodule... Interval increase in size... Interval increase in size... Interval increase in size of left lower lobe pulmonary nodule, now measuring 11 mm (series 4, image 42)...
1. Multiple pulmonary nodules... Findings are worrisome for progression of metastatic disease.
Eight lung nodes were identified on the report, and they were growing. I freaked.
I made a panicked call to my oncologist. I was able to see her that day, thank goodness. This report taught me many lessons, the first of which was this: Don't read a potentially grave medical report until you have an appointment to discuss it with your doctor already in place. [See my PSA in this post.]
My doctor greeted Patrick and me with, "You've seen the report?" We had. As we discussed the findings, she carefully, and thoughtfully explained that she would not be convinced of metastasis until she had clinical evidence. Because my CEA was so low, it was plausible that something other than colon cancer was growing my lungs. It could be fungus, or maybe even lung cancer, ("which by the way we can treat very effectively," she offered in all sincerity). Until we knew what it was, it was impossible to know how best to treat it. She consulted with another specialist, and he agreed to attempt a needle biopsy of one of the nodes.
Since Patrick and I had a long-awaited trip planned for two weeks later, she insisted that we could deal with these new findings upon our return; the delay would be of no consequence. We went home and dove into all of my past radiology reports and read them with "new eyes", trying to make sense of the shocking news. We returned to the newest scan and opened its images on the computer.
A CT scan is a collection of hundreds of images, each representing a "slice" through the body. Every one of the images that make up the scan is identified with a series number, and an image number. The radiologist's report of that September became our Rosetta Stone. The reporting doc had noted in his write-up (see excerpt above) the specific images on which each nodule could be seen. By trial and error we figured out how to use the viewing software that was included with the scan images. Armed with the series and image numbers, Patrick and I clicked through the sections of my lungs from every available angle, identifying and measuring all eight nodes that had been referenced on the report.
One by one we loaded older scans' CDs and painstakingly poured over the images. At this time, we had six disks representing six different scans, either PET or CT. The oldest was from June, 2012--over a year before I was diagnosed. Patrick plotted the size of each node on a graph to track how they changed over time. So that he and I could discuss them more easily, I gave each node a name. (Weird, right? It gets even stranger: I used boy names for the left lung, and girl names for the right.) We studied the images for hours.
Me: Casamina was there way back in June!
Him: This one they called an "interval development"? It isn't.
Me: It isn't what?
Him: A development. It's on an earlier scan.
Me: You mean Julio?
Him: Yeah, him. Look at this...
We worked on separate computers, talking through everything we found. When we finished, each of us had a better understanding of the things in my lungs, but we still didn't know what they were. My oncologist recommended a needle biopsy, which could be done as an out-patient procedure at the hospital.
What I didn't know then is that a biopsy is only useful for confirming cancer. It doesn't prove an absence of cancer. If a biopsy comes back
negative, it only means that no cancer cells were found in the sample
of tissue that was tested. It reveals nothing about the tissue remaining in a person that goes untested. Needle biopsies in particular, could be tricky
when it came to getting results.
I scheduled the biopsy and hoped that the nodes would turn out to be something less repellent than colon cancer. Compared to metastatic colon cancer, even black lung disease would have sounded good to me.