Just over a year ago, I was in the hospital with mysterious breathing difficulties and a mass in my chest that looked like pneumonia, but hadn’t responded much to antibiotics or steroids. The newest theory was acid from my stomach irritating my airways — it didn’t explain the mass, but it could explain the breathing problems. This theory was holding up so far, as I was feeling better on anti-reflux medication and thought I was almost ready to go home. One morning, though, one of my doctors came into the room with disturbing news. She had just come from the lab, where the pathologist had been studying some of my cells from a bronchoscopy. Some of the cells were “very suspicious for malignancy.”
The specialists consulted. They decided I should have a needle biopsy to find out what was really going on in my lungs. An interventional radiologist used a CAT scan to pinpoint exactly where to take tissue from my lungs, using a fine, hollow needle. (Imagine dipping a straw into a glass of milk, covering the tip of the straw to keep the air out, then pulling out the straw. You now have a straw full of milk. A needle biopsy is something like that, only much smaller.) After the biopsy, they sent me home to wait. Then, on January 2, 2013, almost one year ago to the day, the oncologist called me at home and told me I had lung cancer. I was 42 and had never smoked (OK, well, maybe two experimental cigarettes in my teens, which I’m told doesn’t count). I didn’t know yet that 20 percent of women diagnosed with lung cancer have never smoked.
I’ve been writing about my experience for family and friends all year on a private blog. This year, I’ve decided to also begin a public blog especially for other people with lung cancer, our families, our friends, and the health care professionals who treat us. I’m beginning today with just three things I wish I had known about lung cancer in those first 72 hours or so between the first news of the suspicious cells, the first biopsy, and that first phone call from the oncologist. Perhaps you or someone you know is in that same critical moment right now, and this information may be helpful to you.
- I wish I had known that one year later, I would be alive and strong. Lung cancer is a deadly disease, but treatment is advancing rapidly. I am thriving on a medication that didn’t even exist three years ago. The cancer in my lungs has shrunk dramatically, and my breathing sounds perfectly clear through a doctor’s stethoscope. A year ago I had trouble going up or down the stairs without getting out of breath. Today I am able to ride my bike, walk my dog, and even go to the gym. I am not cured, but right now I am able to live my life almost as if I did not have cancer at all.
- I wish I had known to ask them to take extra tissue in that first biopsy. Lung cancer treatment today is driven by all kinds of specific information that your doctors can only learn by sending samples of your very own cancer cells off for specialized testing. Your cancer is unique: it may have a genetic mutation, a protein, or some other characteristic that points the way to a treatment that will help you get healthy and stay that way for a long time. Or it may have a characteristic that doesn’t make it especially responsive to any treatment right now, but could open the door to new treatment possibilities six months or a year from now. The first mutations you may hear about are ALK, EFGR, and KRAS. The basic biopsy will probably yield enough tissue to test for those, but they aren’t the only ones. (I have ROS1, and have been tested for the protein PDL-1). You don’t need to know about all the possibilities today, and unless you are already at a major cancer center, even your doctors probably don’t know the half of what’s possible. But if you can get the doctors to take some extra tissue in that first biopsy and save it for future testing, you may be able to set the stage for quicker, less invasive investigation of treatment possibilities down the road.
- I wish I had known how important custody of my imaging studies would be. Ask for copies of all your CT scans, X rays, and PET scans on disk. Sometimes you can get them right away from a tech or a receptionist, just by asking; sometimes you have to get them later from the medical records office. Be sure you get them. They will automatically be sent to any doctor who ordered the studies, but chances are you won’t end up getting your treatment at the same facility where you are first diagnosed. Other doctors won’t be able to help you without seeing your images. You will also need paper copies of the radiologists’ reports: while surgeons and oncologists will look at the images themselves, they will also learn a lot from the radiologists whose careers are entirely devoted to interpreting such images. If you can get the images on disk right now, it will save time later when you’re setting up consultations with other doctors. You might want to buy (or have someone buy you) a three-ring binder with inserts that hold CDs and DVDs, to make it easier to keep your imaging studies organized and carry them from place to place. Be sure all the disks are clearly labeled, showing when and where the images were taken. (If they aren’t already labeled, you can do this with a Sharpie. It won’t hurt the disks.)
There is so much more I could say, but right now I just wanted to boil it down to the three things that would have made the biggest difference for me right off the bat, in those first 72 hours. If you have a friend or loved one with possible lung cancer, please share. I hope it helps!