Receiving a cancer diagnosis is devastating and life altering, but as a young adult with lung cancer the challenge was even more daunting. Like most people I was oblivious to the fact that I could get lung cancer, after all as a young woman I thought I was more likely to get breast cancer because I had breasts. I never fathomed that because I had lungs I could get lung cancer. I know differently now.
Even after beating the odds of living 5 years beyond diagnosis, the first question I’m asked when people find out I am living with lung cancer is “did you smoke?” The idea that smoking causes lung cancer is so entrenched in our psyche that most people have no idea that up to 60%1 of lung cancer patients have either never smoked a day in their lives, or quit decades prior to their diagnosis resulting in an unfair stigma being placed on patients and their families.* The notion that someone deserves their disease is a ridiculous concept to me, but a 2010 national poll showed more than one in five Canadians said they feel less sympathy for people with lung cancer than those with other cancers because of its link to smoking2.
I started down this road in 2009 when a small bump on my collarbone sent me to my doctor. Despite being unconcerned he sent me for an x-ray. That simple action would lead to the cascade of tests that would ultimately lead to the diagnosis of locally advanced adenocarcinoma of the lung. I am lucky. Things could have gone differently, I could have been sent home. I could have been ignored, I have many friends who were, they didn’t get diagnosed until they were very sick, and sometimes even too late.
I remember the moments leading up to the bomb dropping like it was yesterday. News like that is not something one forgets. My head was swimming, I couldn’t breathe, I could feel tears burning my eyes, I looked for a hidden camera because someone was playing a cruel joke on me, except someone wasn’t.
For the most part during treatment I focused on being a good patient. I compartmentalized my fear and isolation, but at every appointment my eyes searched the room for any remotely young person amongst the sea of older patients. I never found any. I felt very alone.
Once treatment was over, the safety net of nurses and doctors I had was gone. It was as if I had been pushed from a plane without a parachute. The faces I saw everyday were now only seen every 12 weeks. The daily reassurance I had was gone making it especially hard because it was at this time that the gravity of my diagnosis finally hit me like a bus.
Having had suffered from depression before my diagnosis, I anticipated this might happen and tried desperately to be proactive. After all I didn’t just survive cancer to be depressed. The problem was it didn’t present itself the way it had before. This time, it came in explosive anger. I imagine living with me was like living with a ticking time bomb.
Fear and panic set in. Were the aches and pains I felt “normal” or are they something more sinister? I became paranoid. Waiting for scan results was torturous and the fear of recurrence palpable. For me it was paralyzing, I couldn’t move forward because I was afraid to put my life back in order but couldn’t look back because I wasn’t the same person I had been prior to diagnosis. I desperately tried to fit into my old life, but it just didn’t work, it was like wearing a shoe that was two sizes too small.
Somehow when I finally managed to get back on track, recurrence hit. I was devastated once again. My worst fears had come to pass. Beating lung cancer once was hard, I knew beating it twice would be damn near impossible, after all, at 17%, the five-year survival rate for lung cancer remains one of the lowest of all the major cancers3.
Finding out that I was a mutant was a relief…I know what you are thinking!! What?? I’m sure most people would opt for a super power, but knowing I had an ALK-EML4 fusion meant I had options, so for me it was just as good. Prior to this revelation, I had few to no options left as a 32 year old stage 4 recurrent lung cancer patient. I was literally waiting to get sick so I could get treated and hope it wasn’t too late knowing full well I’d likely become like one of the 85% of lung cancer patients. Dead.
By chance, I found information about a targeted therapy in clinical trial. At the time I didn’t know anything about trials, targeted therapies, or driver mutations but I immediately jumped on this and looked for any way I could get in to the trial. Luckily there was a trial close to my home. In Sept. 2011 I was admitted and randomized to the drug group and began taking an ALK inhibitor. Since that time I have been NED (No Evidence of Disease, the best letters I know) and scans remain unchanged and unremarkable. I can’t tell you how much I like being unremarkable!! I know it doesn’t mean cure, but I will take NED any day.
Targeted therapies mean I can live a fairly normal life. I don’t have to worry about neutropenia and infection, or other damaging side effects. I am able to live and travel. I am able to advocate and volunteer. I am able to plan a wedding and plan on a long life ahead. It isn’t a cure, I will likely never be cured, but I gladly put my faith in research, after all it has given me three years and counting.
What’s disturbing is that every year, 26,100 Canadians will be diagnosed with lung cancer, 20,500 of those diagnosed will die4. It takes the lives of more Canadians than breast (5,000 lives), prostate (4,000 lives) and colorectal cancers (9,300 lives) combined5. Yet it is one of the most underfunded.
It is exciting times in lung cancer research and diagnosis. Less invasive procedures, genetic testing, screening procedures, and many new targeted therapies are being developed and improved upon and patients are benefitting in so many ways. From prolonged life and higher quality of life to the freedom of taking their treatment at home and living life unremarkable or not to the fullest. You may think, great! They don’t need funding or support, but in actuality, the disease receives only 7 per cent of cancer-specific government research funding and less than one per cent of private cancer donations6. I can only imagine what they could do with 3%.
I wish that after treatment had ended, someone had helped me navigate the “what’s next”. I wish there was someone I could have contacted between appointments if something came up. Twelve weeks is a long time to go with out any communication after you have had it almost every day. I wish I wasn’t the one who had to do the legwork in terms of finding resources like my young adult group; I wish someone had told me about them sooner. I wish there was someone to talk to me about the potential loss of independence, loss of fertility, career changes, psychosocial issues and financial needs due to treatment. I wish I knew then what I know now.
What can we do?
We can start by offering patients “what’s next” information sessions, just like the ones they get before treatment. Patients can ask Doctors, nurses and other patients who have been through treatment what they can expect once they are finished. Another approach could be a mentorship program where “graduate” patients are paired up with someone who is just about to finish treatment; mentors can walk newbies through what comes next. Obviously treatment and life after treatment will be different for each individual, but the stress and anxiety that we all feel is the same.
We need to ensure that there is communication both between patient and oncology team, and between primary care physician and oncology team, this way when a patient goes to their primary care physician, they know exactly what is going on with their patient. For the patient, a nurse practitioner or patient navigator can address questions and concerns that arise between appointments where applicable.
Finally, knowing the different needs and services out there for patients can truly help them to cope. A young adult will have very different needs and concerns than an older patient, so knowing what is out there for each group is a good place to start. For me being a young adult with cancer came with one set of concerns, finding support as a lung cancer patient had a whole host of others. There are so many patient groups and organizations accessible through the internet and social media, even knowing just one can make a huge difference in the quality of life for patients.
Living with a chronic disease, isn’t about how many days we have to live, it’s the ability to live life in the days we have. When it is my time to leave this earth, I will do so having no regrets. I will know that I did not let my diagnosis define me but allowed me to be the person I was meant to be.
*Current smokers had smoked 100 or more cigarettes and currently smoked. Current non-daily smokers were current smokers who smoked only on some days. Former smokers had smoked 100 or more cigarettes and no longer smoked at all7.
- Lung Cancer Canada, Lung Cancer 2014. Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
- Ipsos MORI, Perceptions of Lung Cancer in Canada, An Ipsos MORI report for the Global Lung Cancer Coalition, April 2010. Accessed at: http://www.lungcancercanada.ca/ resources/site1/general/PDF/CanadaReport.pdf
- Canadian Cancer Society, Canadian Cancer Statistics 2014, p. 66
- Canadian Cancer Society, Canadian Cancer Statistics 2014, p. 45
- Canadian Cancer Society, Canadian Cancer Statistics 2014. Accessed at: http://www.cancer.ca/en/cancer-information/cancer-type/lung/statistics/?region=on#ixzz3K2pyehYD
- Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
- Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.
Anne Marie is a 36 year old lung cancer survivor. Originally diagnosed at the age of 30, she put her career as an educator on hold for treatment. After experiencing a recurrence at 32 she was forced to face what it meant to be incurable. Since then, she has become a patient advocate for both the young adult and lung cancer communities. She has spoken internationally about her experience as a young adult living with lung cancer in the hopes of changing the public’s perception of the disease. Anne Marie currently volunteers as a peer supporter and is a sitting board member of Lung Cancer Canada. “My goal as CKN’s Young Adult Editor is to represent the whole cancer experience and the range of challenges young adults face at all stages of the cancer journey, from diagnosis to remission to end of life.”