In recognition of November as the designated month for lung cancer awareness, I asked members of my online support group INSPIRE if they would be willing to share their personal stories. First up is a post written by my friend Lisa, who was misdiagnosed with a number of garden variety ailments before learning that she had lung cancer. Sadly, a delayed diagnosis is all too common, and the suggestion that her symptoms may have been psychosomatic in origin mirrors my own experience prior to diagnosis.
Lisa also addresses the issue of stigma, from the perspective of someone who was an occasional, or social smoker. Her description of feeling less deserving of care is heartbreaking. Please welcome Lisa:
“I’m a 37 year old woman, married, no children (but two very spoiled cats!). I live in the UK but am Canadian. Was diagnosed November 2011 with Stage IV adenocarcinoma with extensive mets to the bones, brain and liver. I was an Assistant Professor in International Relations at a university in the UK and became alerted to the ‘problem’ initially in Fall/Winter 2010-11 through having shortness of breath/ wheezing/cough which was wrongly diagnosed as asthma. I blamed the cat, had the carpets cleaned and went on with my regular routine of biking to work, doing ashtanga yoga, hiking on weekends and working too hard.
Over the course of that Spring (2011), I also was referred to a physiotherapist for shoulder and arm pain. In June, I started experiencing what are called ‘visual migraines’ – where your vision fractures and shimmers and swirls for about half an hour – and was losing the ability to read text. I was also experiencing photo-phobia – where bright lights hurt your eyes. By September, I had become so sick that I had to go off work, having been diagnosed with ‘depression’ and ‘anxiety’ and having been put on anti-depressants. Still, despite my pleas, and a dramatic weight loss, none of my doctors (and I saw three different family practitioners) would consider my symptoms in conjunction with one another – insisting that they were all common, unrelated problems (migraines, asthma, depression, back pain).When in November, I completely misread my asthma prescription and took 10 times the recommended amount only to have it make no difference to my violent cough, the doctor finally sent me for a routine X-ray. I was called back within hours. Cancer. And so it begins….
There are three points that I would like to make:
1. That it is a sneaky, cruel, insidious disease. Looking back, it was clear that I was getting sicker and sicker and had been for about 14 months prior to my diagnosis. But at the time, it is so easy to just dismiss a cough, a wheeze, feeling a little tired and to continue with your regular routine. Because it happens so slowly, it is easy to miss the weight loss, the lack of appetite, or the excuses that you start to make for taking the elevator instead of the stairs.
2. I can’t prove it, and this is just my opinion, but I have no doubt in my own mind that my misdiagnosis was in large part due to the fact that I was a middle aged female and that my male doctors were preconceived towards a psychological rather than a physiological diagnosis. It is so easy to say that someone’s symptoms are ‘anxiety’ related if they are a little bit complicated, unclear or unusual. Don’t repeat my mistakes. You know when something is wrong. Find another doctor that you connect with and who takes your concerns seriously. Get referrals. Get tested. Refuse to be dismissed.
3. The elephant in the room: smoking. I didn’t do it a lot but I did do it: socially, at parties, doing research interviews if it made my interviewees feel more comfortable. I think that I thought that because I only did it a little, or because I was healthy in other areas of my life – that it wouldn’t matter. And although my doctors insist that the amount that I smoked was incidental to my diagnosis, I tend to disagree. Cancer acts very differently in different people and while some of us can get away with smoking a pack a day and live until we’re ninety, I think that for some of us, all it takes to contract LC is a couple of cigs a week.What is also notable – but hardly surprising – about the general discourse is how there is still an implicit emphasis on non-smokers being more deserving of a cure. (This could be my own insecurity, but every-time I come up negative for a new test that is more common in never smokers (EGFR, ALK), I feel that somehow I have failed at my cancer; that it’s because I am less deserving of a cure.) So, on top of all the other bullsh*t that cancer throws at you, LC has the added sweeteners of blame and guilt. This in turn, acts as a silencer for those of us, who, had we not smoked, might feel more entitled to have a voice in the debate. Instead of speaking up – screaming (or wheezing ☺) for a cure for this woefully underfunded disease – and taking the tobacco companies and other environmental polluters to task for their actions, we focus on our own guilt and quietly accept our ‘punishment’.
As a way of forcing myself beyond my guilt (and having been inspired by Linnea’s amazing blog!) I have started chronicling my own experiences here: stageV.net
I would be so honoured if you would join the conversation. xxx”
Lisa, my heart goes out to you. Please don’t accept a guilt trip. A young light smoker like you shouldn’t have had much risk, so the cause might have been something entirely different like radon or exposure to any number of possible carcinogens &/or an inherited vulnerability. I can relate to the delayed diagnosis problem since I was diagnosed about a year too late (making me Stage IV) because I had no known risk factors. Based on my experience, I wish primary care physicians were more alert to the 15% of lung cancer that occurs in people they wouldn’t expect to have lung cancer.
Craig in PA
Craig, delayed diagnosis is a common theme. I feel, as Lisa does, that a woman who has multiple complaints is more likely to be labeled as neurotic–I was point blank asked by a neurologist that I was seeing for some unusual symptoms of lung cancer (paraneoplastic symdrome) whether or not I might be a hypochondriac. However, anyone who has no obvious risk factors for lung cancer may well fall under the radar. And you are correct about the guilt trip–even many heavy smokers never get lung cancer. Ultimately, no matter your history, it is chance, genetics or bad luck that determines who will get this disease. And all of us, no matter how we got here, are equally deserving of compassion.
Lisa, I too was diagnosed with stage IV NSCLC in Sep 2011 after many other possible causes of my symptoms were considered and proven wrong. Many months past before I was correctly diagnosed because I too was healthy with no reasons for my doctors to suspect cancer. Unfortunately it seems that testing for LC early on in the symptom stages is not the normal protocol at this time.
Barry, it may be years before they develop standardized screening for lung cancer. When they do, I hope they cast the net wide, as it is increasingly obvious that having lungs is the biggest risk factor for lung cancer.
Linnea- Great idea to profile others for Lung Cancer Awareness Month!
Lisa- Hope the blog helps you move beyond the guilt.
Kimmy, there are lots of good voices out there (you among them). The more of us that are heard, the louder and more difficult to ignore, we become!
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Linnea and Lisa, what beautiful women you are, both with such a gift for sharing your difficult stories. Lisa, I read all your posts today and look forward to following your story. My heart breaks for you both in obvious ways, wishing you weren’t struggling with such terrible issues. I feel such strength from you both, though, and I’ll always be sending you positive energy!
Thanks as always for your kind words and good wishes.
Linnea, birds of a feather, you and Lisa must be…what warm, wonderful, strong women you both are. Your words have helped me deal with Steve’s situation more than anything I’ve read. Lisa, you are my daughter’s age, I’m so sorry you are living this instead of the life you planned. You are so inspirational in your approach to treatment and life. Stand Strong, Ladies, and Take Care.
Hedy, I am glad to have met Lisa; only sorry about what has brought us together. What she has chosen to share is so very moving and important as well. I am sad she has this disease but admire her decision to be a good, strong voice for lung cancer.
Dear Linnea, thank you for introducing me and us to Lisa!
Lisa, thank you for entering stage V, I’m in awe of your ability to write about what you are experiencing. I will be following you!
It was strange to read your young age, 37 years – that age seemed so distant to me, I was 37 when my son was born. And yet I was diagnosed stage IV when I was 39, now full speed heading for 43 in the beginning of next year. I wish and hope the same for you; to be able to keep on adding those months to years.
Strong hugs for you both!
Anja, Lisa is wonderful. And I saw your share on facebook and translated the swedish–it is true, we are all sisters 🙂
Good strong hugs back to you!
Thank you for all these kind and helpful comments. It was so inclusive and smart of Linnea to post some of our stories for LC awareness month. Thank you Linnea! It’s been amazing to hear other people’s experiences, tips, thoughts. I tried a local support group for LC where I live, but it was far too broad. I was the only Stage IVer in the bunch and the only person under 65. This ability to connect directly with other people who have been given a similar prognosis and who are undergoing similar treatments is so much more helpful. It’s also been astounding to hear how many people were improperly initially diagnosed.
Much love and courage. Lisa
Lisa, I encountered similar problems to your own when it came to local support. The internet has been a boon, as I’ve now come to know so many people in similar situations–from around the globe. When I am feeling lost, I think of all my friends who are facing the same difficulties, and I regain my resolve to persevere.
Thank you again for sharing your story, and much love and courage back!