A year has passed since I was diagnosed with Stage IV non-small cell lung cancer. Looking back, I’m frightened by what might have happened if I didn’t get a second opinion. Chances are excellent that I wouldn’t be here to tell this story.
I’m about the most unlikely person to get lung cancer. I’ve been nicotine free for over thirty-five years, take care of myself, eat pretty well, work out, hike, and bike ride, and have a generally happy life. But in September of 2019, something was growing near my sternum. I watched it take form for a month before having it looked at.
My primary care physician, Dr. Gavin narrowed her eyes as she touched the growth. “Hmm, let’s get an x-ray,” she said.
Within a couple of hours, she was calling to tell me, “I’m ordering a CT scan. Schedule it as soon as possible.”
Let the freak out begin.
My chest x-ray revealed not only the lesion near the sternum, but something abnormal in the upper right lobe of my lung. The CT scan the following week got a closer look.
“I don’t think you have cancer, but I want to send you to an oncologist to be sure,” Dr. Gavin decided on my second visit in that many weeks.
Dr. Farrar, oncologist, didn’t think I had cancer, either. “I’ve never seen cancer start there,” he said. The growing tumor in my sternal notch was stumping everyone.
But the evil truth was that I did have cancer. A biopsy followed by a PET scan revealed metastatic lung cancer that was originally diagnosed as Stage IIIb.
“I’m sending your biopsies out to a lab in California for biomarker testing,” Dr. Farrar explained. “Lung cancer has eight markers. If your tumors have one, you’ll be able to have a pill instead of chemo and radiation.”
A pill? Oh, I would love to kill cancer with a pill!
Other problems started.
A growing lymph node in my neck had to be biopsied, as did a growth on the back of my tongue that my new radiation oncologist, Dr. Lee, found when he was examining me before radiation prep. This was a split; the neck node was cancer, the throat node benign. Before the biopsies proved otherwise, Dr. Lee had warned, “It could be two different cancers. Head and neck, and lung. They might have to be treated separately.”
In other words: I was a goner.
Dr. Lee was planning my radiation. Dr. Farrar was the orchestrator of my chemo.
“How are your veins?” he asked.
“Terrible!” I groaned.
Even getting a blood draw could be a task.
“Would you like a port?”
I took him up on the offer. No use having Taxol and Carboplatin seeping out of my tiny veins. I already had enough problems.
While I waited for my port procedure appointment and took care of other hard-to-believe realities, like being fitted for wigs and being prepped for radiation of a growing number of sites, I fretted over the amount of time it was taking for my treatment to start.
Dr. Perry, who did my first biopsy, also put in my port. Now, my tumors were swelling. I’ll never forget the words he said to me when he saw me again: “You need treatment soon.”
He was right. In fact, I was in such dire need of treatment, I was ready to abandon my plan to get a second opinion, because I didn’t want anything, not even that, to get in the way of finally getting what I needed.
I live in Massachusetts, home of some of the finest medical facilities on the planet. Dana-Farber Cancer Institute, in Boston, is seventy-five miles away. My plan was to get a very pricey “online second opinion,” figuring that my team at Downtown Hospital could use it to guide their decisions about my treatment. If things got bad, I could join a clinical trial. But I had no plan to be treated there, because I was sick of waiting and needed some action.
Nevertheless, I told Dr. Farrar about my Dana-Farber plan.
“No need to pay so much. We’ll just send you there. We collaborate with them all the time.”
Two of my older sisters were my support system. We collectively agreed to take Dr. Farrar up on his offer. His nurse Corrine began the process.
“You’ll probably already be undergoing treatment by the time you go,” she warned.
Even better that way. Because there was no way I was suspending treatment any longer, not even to go to a cancer center that is consistently in the top five in the entire country!
Port in, check. Radiation “mapping” done, check. Wigs, check. First chemo infusion on the calendar, check. Then the appointment with Dana-Farber came through, with confusing instructions explaining where to drop off the CD of my scans, where to park, even what door to go in, as well as the name of a fancy doctor I’d be seeing. Who needed such complications at a time like this? My radiation schedule also had to be tweaked, because the appointment fell on my second day of treatment and, weirdly enough, the day before I was to start chemo. What a week. What a life. What had happened to my former happy existence, where the biggest decision I had to make was where my next vacation would be?
Now, about those biomarkers.
My last hope of sidestepping chemo and radiation was shattered when I called Corrine to ask about the markers. Were they back from the lab yet? Or was I not notified of the results that I was literally dying to receive because the news was not what I’d hoped?
Corrine’s fingers clicked on the keyboard as she found the answer. “EFGR, negative. KRAS, negative. ALK, negative…” She spoke without feeling. “Seven of them are back, and they’re all negative. I’m sorry,” she finally said. I didn’t question the eighth marker, because I knew it would be negative, too.
I hung up the phone, feeling deflated. It was a Friday afternoon. Radiation started on Monday, the second opinion was on Wednesday, and then, the most dreaded date on my calendar, chemo, would start on Thursday. Less than a week away.
But at least I was getting treatment. That was my way of trying to make light of a devastating situation. Be brave, I told myself that weekend. You’re going to get through this. My treatment, which included thirty-three sessions of radiation and seven weekly chemo infusions, would end the day after Christmas. I couldn’t decide whether that was a gift or not. Knowing I was probably going to die was not what I expected out of life.
The radiation machine was ready for me. Dr. Lee was there to assure me that his plan would include all the sites of my cancer. Many side effects were likely. Chemo had an additional forty-eight pages of suffering. But my first two radiation sessions had no effect on me.
Right out of my radiation gown on the second day, my sister Joan drove us to Boston.
Downtown Hospital was quiet, the cancer center tucked into the rear of a few drab concrete buildings. The waiting rooms were generally as empty as the parking lots. Dana-Farber was intimidating, like Grand Central Cancer Station, a virtual pageant of every age, shape, size, and condition of cancer patient. People didn’t come here because they wanted to die. But I was holding fast to the plan that I was on. In fact, of the questions I had for “Dr. Chong”, the first one was if he agreed with my radiation and chemo schedule.
After we figured out parking, where to drop off the disks of my tests, and took care of insurance information, the wait for Dr. Chong was monotonous. We were there early to start with, afraid of missing the appointment. After an hour in the café, we spent nearly another hour past our scheduled time waiting for the doctor. We were all exhausted. But Dr. Chong was about to give us a wake-up call.
First: The look. He was perfect. Handsome, young, impeccable, and very, very sorry for being late. After formalities, he inspected my tumors, nodded a few times, and said, “I’d like to answer any questions you may have.”
Okay, time to hear him say that he agreed with the treatment plan that I was on, then we could drive two hours home and I could go to sleep.
By now, the binder I brought with me everywhere was fat with important notes and paperwork. My pen ran over the words of that first question.
“I don’t agree with the plan. The radiation field is too broad. You won’t get better,” Dr. Chong answered. “And--” He sifted through a large folder that was all about me and the monster in my body, “you have the ROS1 biomarker. I want to treat you with a new targeted therapy drug that was just approved in June and went on the market in August.”
If the proverbial pin dropped in that room it would have made a resounding echo.
Biomarker? ROS1? What? Who? Me??
My body went cold as I met eyes with my sisters, who were as stunned silent as I was.
The eighth marker. I hit the eighth marker. My life suddenly rushed back into focus.
Dr. Chong laid out a potential plan that included abandoning my current chemo and radiation plan. We’d travel back to Boston the following week for blood tests before I started the new drug. Everything was spinning in a fresh and incredible way. The only downer was that Dr. Chong said that my cancer was Stage IV.
“I won’t ever be cured?” I murmured.
“It’s not out of the question. If the drug shrinks your tumors enough that we can follow with consolidative radiation therapy there is the small possibility of a cure, but we certainly can’t promise that. With Stage IV disease we usually focus on treating, not curing.”
I liked Stage IIIb much better. But I was going with Dr. Chong’s plan. I was eighteen hours from chemo with a port in that I suddenly didn’t need. As we drove home, in between calling and texting friends, an uncomfortable feeling settled inside me, with questions I needed answers to: Why was I not told about the ROS1 marker at Downtown Hospital? Why did they start me on chemo and radiation, when they could have given me a pill? Did they even know about the marker, or was it a glaring oversight?
I didn’t have any proof that Downtown Hospital knew about the biomarker before they started me on their plan. Maybe they really didn’t know?
At Dana-Farber, I had my blood tests, and also had a consult with a radiation oncologist that looked even younger than Dr. Lee. Her name was Dr. Sayer and we talked again about the possibility of consolidative radiation therapy if I had a great response to the new drug. This was the only way that radiation sounded good! “And the field will be much smaller, too,” Dr. Sayer added.
I started the targeted therapy pill on November 27, 2019, and quickly began to hit milestones.
Three days later, the ugly sternal tumor was half gone. (No, I am not lying. This is the power of having a biomarker and treatment that works.)
A few weeks later, I looked in the mirror and realized that I was winning the battle against The Beast.
Dr. Chong told me to start doing what I love to do again, just take things slowly.
I started hiking again, building up my strength.
On January 6, 2020, I had an emotional reunion with my students and coworkers when I returned to my teaching job. On the 8th, I had a very favorable CT scan that indicated the medication was eradicating my cancer.
In February, I had my port removed, and had a PET scan, ordered by Dr. Sayer, so she could decide if I was a candidate for consolidative radiation therapy. I was.
We started in March 2020, beginning with what was left of the lung tumor. By this time, the sternal tumor was no longer showing up on the scans, and the neck node was small. The lung lesion was much smaller but still lighting up on the PET, so it was first. I was scheduled to have radiation to the node following the lung treatment, but COVID19 changed the plan. My lung treatment proceeded, but the node treatment was pushed forward to summer.
As I write this, my radiation treatment is complete, and I am nearly cancer free. The word “cure” is coming into the conversation much more often.
But what about that glaring oversight of the positive biomarker by my oncology team at Downtown Hospital?
One day at Dana-Farber, my phlebotomy nurse was searching through scanned documents from Downtown Hospital for some information she needed. I kept seeing “ROS1” popping up in the paperwork dated November 2019. Or maybe I was just imagining things?
“Can you print that document for me?” I asked.
“Of course!” Julie said. “I can print anything you want.”
I just needed those two pieces of paper.
Once the blood test was over, I read them word for word.
Dated the week in November 2019 that I started radiation and chemo at Downtown Hospital: “Fortunately, she has tested positive for the ROS1 biomarker.”
The local hospital knew.
I’ve never gotten an answer why my treatment plan didn’t change. Looking back from where I am now is scary. But I’ve moved on, because I had to move on. I just had to let it go and be thankful that I got the treatment I needed before it was too late.