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!
Great post! YES to all three points, especially #2. Biopsy material is crucial. I am only at 7 months, so I hope to be joining you in saying #1 in May. Great post, keep writing!
Great post, Wish I had read it earlier, I am one year cancer free from lung cancer. It was quite a trip and just keep praying that it stays away
Thanks so much for all the hard work that you do. I have so many side effects from the chemo, 30 radiations to my right lung and 10 radiations to my brain. It is difficult for me to do anything and has been this way for almost 7 years. But praise God I am still alive. Was your cancer small cell or non small cell, and what stage?
Adonda, my cancer is non-small-cell, probably stage IV. That’s actually the topic of the post I am preparing for tomorrow!
That is what my mom passed away with 3 yrs after her diagnosis of small cell carcinoma stage 4 in 2006. Its slow growing but she and her Dr chose aggressive chemo which left her nearly dead all 3 yrs. I dont know what I would do but it was so painful watching her suffer the last years of her life just from the treatment.
Jackie, I absolutely could not have kept up chemo for three years. And my side effects were mild compared to what some people experience.
Thanks for posting. I am also ROS1 positive. 42 year old female, diagnosed 18 months ago. Stay positive!!
Thanks for posting. I am almost 4 years cancer free from lung cancer. Wish I had known these important facts. Will share in hopes of helping others.
Excellent advice!!!! I am 10+ yrs cancer free from Stage IV NSCLC squamous cell (upper left lobe left lung) and 22 months out from Stage I NSCLC Adenocarcinoma (upper lobe right lung). What you are doing is very informative and greatly appreciated!!
Thank you so much for the info. I am 5 years cancer free at city of Hope!! and those discs come in handy. Also I wan to add a ill that I took for one year “TERCEVA” I was told that it was a trial and seems to work fine with me.
thank you for your post i have smal longcancer diagnose 2003 spread to liver and kidneys
but still fighting
I just found out 3 months ago that I have stage 1v . The scariest part to me is that I have 2 young daughters . It went to my brain but only one liaison and I believe they got that … I worry now because they say they are only doing chemo for now when at first we were going to do chemo and radation but now they won’t to get some lymph nodes under control and then do the radation all I know for now is I have 4 more rounds of chemo to do
Taynamysmom, have they tested your cancer tissue for genetic mutations such as EFGR, KRAS, ALK, and ROS1? Has anyone talked to you about clinical trials? You don’t say for certain what kind of cancer you have, but if you have lung cancer these are things that could potentially give you a lot more quality time with your daughters.
My diagnosis is this I copied it from my medical report In brief, the patient is a 47-year-old woman with an isolated brain metastasis from adenocarcinoma of the lung. The patient is here to plan chemotherapy following stereotactic radiosurgery for her brain metastasis. I did the brain stereotactic radio surgery I believe they got that
Thank you very much it takes a lotto share all oft he information you have share you have so much strengh I am so glad you did not have any surgery that is not good .I thank God for the medication that you are I love the port info you made me feel like it was ok and comfortable but when it was being done yes iw as scared but I remembered you and I got though it I will never forget what you did for me thank you and may God bless you and kept you.
Diagnosed with probably stage IV NSCLC as the 1st symptom I had was from a tumor in my eye. Very small 2.5 cm tumor in left upper lobe w/some lymph node involvement right next to the tumor. Absolutely NO respiratory symptoms. Lots of testing followed by a left upper lobectomy 12/9. Oncologists I was seeing in suburban Boston never heard of lung mets to the eye. I had a 2nd opinion at Dana Farber Cancer Institute in Boston, NOT down the street but DOABLE. What a fantastic place!!!! They HAVE seen lung cancer mets to the eye, it is rare, and tell me if I treat both cancers aggressively/getting proton beam radiation at MGH for my eye next week, that if I have some chemo, which I really did NOT want, that I am very possibly CURABLE. They think I may have what is called OLIGMETASTATIC disease which is a primary and one or few mets to distant sites. They kind of stage me at 3A for the lung and 4 for the eye. They gave me so much hope!!!! Going for some labs and pet scan in a few weeks, if the scan is unchanged and I am up for it I will likely have my first infusion. It does not sound pleasant BUT does sound POSITIVE and I feel in GOOD hands with these drs who ONLY do lung cancer. They also speak of radiation down the road and tell me they can arrange for me to get it LOCALLY since it’s an every day thing. But for now taking it a day at a time, tryng to anyway. Thank you for your posts they are most encouraging and help me have HOPE