Ask the Advocate: How Did You React to Your/Your Loved One’s Diagnosis?
A diagnosis of lung cancer can make it feel as though the world has turned upside down around you. We asked some of our advocates how they felt or reacted when they heard the diagnosis that impacted their lives. Experiences can differ; you are not alone.
I was absolutely numb. I was a single mom and just finished burying my mother because of lung cancer. My twins were 10 years old at the time and there were no relatives around. My concern was only for my sons, not to leave them orphans. It was 17 years ago and I felt very alone and scared. The world wide web was not mainstream and many people did not have computers in their homes. After the initial mind-and-body-altering numbness I went into action and focused on my doctor appointments and treatment. Read more from Alisa here.
When I first heard I was diagnosed, I didn’t understand how. I wasn’t a smoker and just turned 33. I have a 7 year-old daughter to raise. I wanted to know how much time I had left. I was told, “Everyone is different but from what we can see now, you have about 12-18 months to live.” I completely broke down crying. I asked if we could cure it. I was told no, but it is treatable. Read Samantha’s articles here.
I received a phone call from my gastroenterologist, who had sent me for a chest/abdominal CT scan to look for possible gall bladder problems. I was at work in my office space that included four other colleagues. The doctor told me in that call that my gall bladder looked fine, but that it looked like I had lung cancer. This was the second time in my life that I’d received a cancer diagnosis by telephone while at work. The first time, 16 years earlier, was for uterine and ovarian cancers. This time, it was lung cancer. I had done my homework concerning my symptoms and knew there was a possibility for this diagnosis, but in reality, I didn’t expect it. So… my reaction, well, it was reasonably calm, serious, questioning. I asked the doctor if she could refer me to a good oncologist. She gave me a few names, and then, thankfully, asked me if I wanted her to call and make me an appointment. I felt certain that as a new patient, a doctor’s call would get me in much more quickly than if I called on my own. As it turned out, I had an appointment with my oncologist the following morning at 8 a.m.
As to my reaction once I hung up the phone from that brief call which lasted perhaps 5 minutes, I turned to one of my colleagues and said, “I have lung cancer” with a bit of a shaky voice. Then, I walked down the hall to tell my supervisor the disconcerting news. I must admit that I was a little bit distressed, but also of a mind to just get on with whatever I had to do to meet this disease head-on. I didn’t want to let any daylight come between learning the news and starting the fight I was in for. Time was potentially an enemy for me at that point and I was up for the challenge! “Let’s get on with it” was my determination at that time… and it is still. Read Karen’s articles here.
I had an inkling that John was going to be diagnosed with cancer based on the symptoms he was dealing with. I can’t say I was shocked or surprised at first, but once we found out it was Lung Cancer and incurable, my heart broke. It broke for him, for us and our planned future and everything that we were about to face. My shock was more; I can’t believe this is our life and happening to us. In general I went into action mode. I felt John shouldn’t deal with more stress besides coping with his diagnosis. I took the reigns with coordinating and communicating with his health care team, doing all the research, and trying to be the voice for him when he couldn’t do it himself. After awhile he became more interested and did some of his own research, but for most of his journey, I was still the main coordinator. Read Kristine’s articles here.
When I was first diagnosed with lung cancer, my immediate thought went to my kids. I had just lost my good friend, Kelly, to lung cancer 5 months before. I didn’t want them to automatically associate me having cancer, with me dying. Although, that was my next thought, “how long am I going to live?” It was a very scary and emotional time for me and my family. I was very grateful to have such loving and supportive family and friends that rallied around me.
Once I was able to wrap my head around everything and we had a treatment plan I felt a little better. The unknown was almost too much to bear and the waiting was awful. I am not a very patient person. I read as much as I could about lung cancer and what I could do to keep my body as strong as possible. Exercising when I could and eating healthy foods was my way of keeping some sort of control over my life. So many things had changed and I needed to have an active role in my survival. That, along with prayer, meditation, unconditional puppy love, and my family are what got me through my toughest days. Read Lysa’s articles here.
I had a suspicion that I had cancer after my primary care doctor ordered a PET scan, but I had no idea what kind of cancer she was looking for. I worried that I was going to be told that I had lung cancer. My dad had died of it way back in the 70s and the disease always terrified me. When she called and gave me the news that I did, in fact, have lung cancer and that she had set me up for an appointment the following day with an oncologist, I was with my husband in the parking lot of a Chinese restaurant. I shed a few tears as I talked to the doctor. Then, I dried my face, put on a smile, and we went in to eat lunch.
Lunch was fairly quiet, but we did decide that we would wait until after we saw the oncologist before we worried too much or told anyone about the diagnosis.
After we met with the oncologist, my husband and I decided that we would tell my mom and our son that I had lung cancer, but we would present it as if it was not that big of a deal. We decided right then that we would live life every day and face challenges as they came, rather than worrying about what might be. Read more of Donna’s articles here.
By the time I had received my official diagnosis, I had been researching possibilities for three months. The more tests I had, the narrower my options became. I was 46 and in otherwise very good health — a respiratory virus had plagued me after a round of prednisone for a torn rotator cuff which led to an X-ray to check for pneumonia, starting the process off, but this issue was already largely cleared up well before my first biopsy. None of my doctors wanted to jump at lung cancer because I did not fit the profile. Everyone suspected an infection as the source of the mass detected on my X-ray. We clung to that notion at home because lung cancer was simply too frightening. But I began reading everything I could because I quickly began to suspect that cancer was a distinct probability.
The first thing I did, which I always tell people to avoid, was to scour survival rate statistics. Fortunately for me, I knew a little something about how to read statistics and what they can — and cannot — tell you about the disease. Then I began to research what was currently going on in lung cancer treatment. It wasn’t all pretty, but I knew that advances were being made and that the stats I was reading were largely at least ten years out of date by the time they were published. I also knew that they did not accurately represent my personal demographic. Even so, before my diagnosis, I actually went through the various stages of grief. I was angry — I would sit in my car and scream some days. And I was sad, crying quite a bit. But I did these things in private, to shield my family from the growing certainty that I was dealing with a potentially terminal disease that had not even been diagnosed yet.
It was very important to me that my daughter retained a sense of normalcy in her life. She was only eight and looked to me for stability. This was a challenging position to be in, but I committed to keeping her life as consistent as possible. This was very central to how I decided to approach my condition and form my attitude going forward.
When I finally had a biopsy and was told that I definitely had stage IV lung cancer, I was actually relieved. I was able to let go of most of the grief I had built up (some of it would eventually sneak back in for a visit on occasion when I was going through a rough patch of chemo), and I was actually able to smile and be excited because now — now — I could make a game plan. I could move forward knowing what I was actually dealing with and no longer spinning with conjecture or fear of the unknown. For me, hearing the diagnosis and getting an idea of my options actually felt like a huge load was lifted. I reached that point of acceptance, resigned myself to whatever I was going to have to go through to outlive this condition, and took that first step down my new path. Read more of Jeffrey’s articles here.