As many before me have noted, cancer is a roller coaster. But sometimes the sudden ups and downs are not of cancer’s making.
Yesterday the Puget Sound region started a span of spectacular weather. It’s hard to beat a mild, sunny day presiding over deep blue water, green trees, snowy Olympic Mountains and high-definition Mount Rainier.
I drove to Seattle to visit my Virginia Mason lung cancer team in great spirits. They look forward to learning more about ROS1 and Xalkori clinical trials, and I look forward to giving them good news from a stage IV lung cancer patient. I planned to discuss my clean scan results from University of Colorado Hospital, along with some pesky side effects of past and present treatments.
With my pulmonologist, I mentioned my lingering radiation pneumonitis (lung inflammation) and hot spots noted on the PET/CT report. He pulled up the scan on his monitor for review. He started at my collarbone to confirm the area of my last recurrence showed no activity, then scrolled down through the layers of images to check my lungs. He was scrolling to the last images to check the hot spot noted on my left ischium (at the bottom of my pelvis, left side) when I heard, “What was that?” He scrolled back a few frames, and pointed to the screen.
In my spine was another hot spot. This one had NOT been noted on the PET/CT report. Since lung cancer is known to metastasize to bones and the spine (among other places), this concerned him. He consulted by phone with a clinic radiologist, who viewed the scan while they talked. The CT portion of the scan could not confirm the presence of a tumor. An MRI could give a clearer picture of structure with better resolution. The physician’s assistant scheduled my MRI at my neighborhood clinic for 8 AM next morning, Friday, with a follow-up visit the following Monday.
And this started out to be such a beautiful spring day.
I began the 30-mile drive home increasingly numb. I had thought I was in the clear for another two months, until the next PET/CT scan. When I have an impending bi-monthly scan to check for cancer recurrence, I’m prepared for bad news should it occur. But today was supposed to be a happy day of celebration with my team. I wasn’t expecting any BAD news.
As the evening wore on, I became a mass of mixed feelings. My confidence was shaken. I depend on radiologists, who are trained to analyze scans, to determine whether my cancer is still under control. Scans determine if my clinical trial drug is working. I know doctors aren’t perfect, but if a radiologist can miss a possible recurrence, where does that leave me?
I emailed my Colorado oncologist to tell him we’d found another hot spot, and asked what he wanted me to do to keep him in the loop. He is my primary oncologist and calls the shots on my treatment should I have a recurrence. He said he didn’t mind if I had the MRI in Seattle, but send him the scan and the results ASAP.
I then emailed my Seattle oncologist to request that he have a Virginia Mason radiologist review my UCH brain MRI, just for my reassurance. He replied promptly that he would do so and email me the results on Friday.
By the time I went to bed Thursday evening, I was depressed. I felt like I did when my first recurrence was discovered. I couldn’t relax. I ended up spending another hour or two searching the Internet and reading journal articles about prognosis and treatment of spinal mets in lung cancer patients (not a relaxing subject, I must admit). I also read how signs of disease are missed on radiology scans. When I did finally fall asleep, I dreamt of loss.
This morning I had my MRI. The narrow tunnel of the scanner felt especially confining for the 20 minutes I was inside. Afterwards I asked the tech if the scan covered both the lumbar area (where the spine hotspot was) and my ischium. He said no, the doctor only wanted the lumbar scan. Oh, OK, I thought. Maybe the pulmonologist wasn’t concerned about the ischium after all.
I muddled through the day until I could pick up the CD and radiology report at 3 PM. I took a deep breath, unfolded the scan report, and immediately smiled.
No evidence of metastatic disease. **Whew**
I called my pulmonologist’s office and asked if I could cancel my Monday appointment, since we had nothing to discuss. His PA called back about an hour later, but not with the response I expected. The doctor DID want to see the ischium in the scan. I have to do the MRI again Monday morning.
Instant replay. **Deep breath**
To borrow from the movie Serenity, “I am a leaf on the wind ….” The speaker, Wash, was a spaceship pilot who successfully threaded an impossibly challenging, fast-moving labyrinth to arrive safely in port.
Wash had a spike rammed through his gut about a minute after he landed.
I am so glad you posted this link. You speak eloquently for all of us Janet. We indeed are like leaves in the wind. Thank you. Diane
I well remember that moment in Serenity. Wash was one of my favorite characters, and it was an awful shock. I pray the MRI will show no evidence of cancer in the ischium scan.
I’ve gotten so paranoid about PET scans that I am dreading the next one. As Jay Lake once pointed out, it’s like knowing a sniper is out there and that one day you’ll be his target…
Stay strong, Janet. God bless you.