Maggie Smith

November 17, 2015:

On March 31, 2015 I showed up for a doctor’s appointment thinking I needed a new asthma medication. I’d been told since high school that I had mild asthma, online which caused my occasional wheezing and coughing. Twice in the past few years I’d coughed hard enough to see blood – once when I was 8 months pregnant with my first son, and again at a few weeks post partum with my second son. Both times I’d headed to the emergency room, both times I’d been reassured that it was just a broken blood vessel. I was told that pregnancy, dry air or even coughing could cause it. By early 2015, though, my mild cough just wasn’t getting any better, and my wheezing was getting worse. At my appointment that day, my new primary care doctor frowned and asked if I’d ever had a chest x-ray (I hadn’t). She told me that hemoptysis (coughing blood) was actually pretty rare and I was sent downstairs to get an x-ray done. A short while later I was sitting in the exam room listening to my doctor tell me there was “something” in my lung, and staring at a big white blob on the x-ray. I remember asking how much I should be freaking out, and she said we were at about a 5 out of 10. I was told it could be an infection – rare, but possible. And of course it could be cancer. She sent me for a chest CT and let me know we’d hear back that afternoon.

I held it together until I got into my car and had to call my husband, and tell him there was a mass in my lung. We both called in to work and sat around waiting for CT results. I spent that afternoon googling the infections my doctor had mentioned – histoplasmosis, tuberculosis, sarcoidosis, silicosis. None sounded fun, but they all sounded better then the alternative. Everything felt heavy; I could barely move my limbs. My CT results came back late that afternoon, and we were told they still didn’t know for sure what it was, but infection was a possibility. It did not appear to have spread to my bones. They also told us it could be cancer. We were told to come see a pulmonologist the following day.

My pulmonology appointment happened to fall on April Fool’s day (a day that has surely been ruined for me from here on out). Nate and I sat in that doctor’s office and were told by two pulonologists that they thought it was cancer, and because it had invaded my bronchus they thought it was aggressive. An infection was unlikely. They wanted to prepare us. I was scheduled for a biopsy and cryoablation (a procedure to freeze and remove the part of the tumor in my airway) the following day.

I work in public health. As a student, I worked in tobacco prevention programs. I knew that lung cancer research was underfunded. I knew that a lung cancer diagnosis was often times little better than a death sentence. And of course, I knew about Liz, and I knew it could happen to anyone. The details of the next few days are fuzzy – I know our families were here, I know that they kept my boys happy and oblivious. I know that Nate and I could barely eat. That we were thankful we had life insurance. I wondered if I’d make it to 30. If I’d see my baby learn to walk. I remember my pastor praying with us before I was sedated for biopsy. And then I remember waking up, and hearing from the pulmonologist that it was good news. The tumor appeared to be well differentiated. She thought it was either adenocarcinoma or something called a carcinoid, a rare form of slow growing lung cancer. Her gut said it was a carcinoid, and she cried when she told us.

The next day was Good Friday. I had a PET scan and the biopsy results came back. She walked in with box of celebratory chocolate eggs, and told me my PET was clean – no spread, and my biopsy confirmed that it was a carcinoid. Of the two types of carcinoid (typical and atypical), the biopsy indicated it was typical – usually less aggressive. I needed surgery, so we had a consult a few minutes later with a thoracic surgeon. As Nate and I talked with the pulmonologist and the surgeon, we mentioned that we appreciated the expediency in getting us our scan and biopsy results. We also mentioned Liz, and Living for Liz, and that she’d been on our minds all week. To our surprise, both physicians said that Liz had been on their minds as well. Both had worked with her and knew her story. They told us that as my case was being discussed, that they were thinking about her. I believe her story and her legacy made a difference in my diagnosis, in the speed we received results and in the interactions we had with staff.

A few weeks later I headed to the UW hospital in Madison for a left upper lobectomy with a sleeve resection. In laymen’s terms they removed half my left lung and part of my airway – they stitched up the airway with muscle removed from my ribs. I spent a week in the hospital recovering and dealing with an air leak in my lung. I was able to continue breastfeeding my baby during this whole ordeal, which was important to me, and the only little piece of “normal” that I felt at the time. After the first few days I started to graduate from different equipment – they removed the epidural that was keeping my torso numb, my central line was removed,  I was able to walk by myself. Piece by piece I shed things, until finally they were able to take out the chest tubes and get me ready for discharge. As I was getting ready to leave, my surgeon came back in to tell me that my pathology had come back – unfortunately it was not what we’d originally thought. My path report indicated that my tumor was atypical, or grade 2. In a 27 year old, a typical carcinoid is very rare – atypical carcinoids are even more so. Additionally, an adjacent lymph node tested positive for cancer. We were crushed.

In the months following, I saw two oncologists and eventually two specialists in neuroendocrine cancer. We talked about chemo. We talked about various forms of radiation. We talked about drugs used for neuroendocrine cancer called somatostatin analogues. I learned about tumor markers and carcinoid syndrome. I learned a LOT about neuroendocrine cancer, and found an online community of people called “Lovable Lungnoids” who shared my diagnosis. I learned that at one point in history carcinoids were considered to be benign, but we know now that they do recur, and are in the same family as large and small cell lung cancer. They tend to grow slowly, which means that a recurrence can occur 5, 10, 15 years after diagnosis. I learned about the Healing NET Foundation, founded by one of the specialists we saw, and I learned that carcinoids can originate nearly anywhere in the body. They are most common in the GI tract, followed by the lung. Like all forms of lung cancer, they’re under researched. In hindsight I think the atypical diagnosis was a blessing in disguise. It pushed me to research and learn more about the disease I’m dealing with.

I’m now six months post op, and feeling pretty great. As my scars fade and we settle into the recommended follow up (which at this point is watch, wait and pray), I keep thinking about ways to raise awareness of both neuroendocrine cancer and lung cancer in general. Doctors think that my tumor grew over the course of a decade – my symptoms started in high school. This long history is good for my prognosis, however catching symptoms earlier could still have made a significant difference in my outcome. My symptoms included wheezing, coughing, hemoptysis (coughing up blood), and recurrent bronchitis. These echo the symptoms of many forms of lung cancer, and of course many lung cancers grow much more quickly so missing these symptoms could be a matter of life or death.  I was 27 when I was diagnosed, and had never been a smoker. I hope that my story helps others understand that if you have lungs, you can get lung cancer.  If something isn’t right, get screened. Ask questions, push for tests. I hope we can get past the stigma that lung cancer is a smoker’s disease, and start funneling research dollars into a disease that kills more people than most other cancers combined. I hope that someday a lung cancer diagnosis won’t strike fear into people’s hearts the way it does today. I also hope to bring awareness to neuroendocrine cancer, which many have never heard of and is rising in incidence. And of course I hope (and plan!) to be here to see my grandbabies.