My blog entry
When I was diagnosed with breast cancer in 2001, there was a support group called Reach to Recovery who came to my home right after my surgery. The two group members, who were breast cancer survivors themselves offered reading materials, emotional support and great advice for my recovery. This large group met monthly and the meetings offered information, fellowship, fun, and were an enormous support. There was also a smaller group who trained and competed in dragon boat races. My diagnosis of lung cancer heralded awesome support from family and friends but there was no large group of survivors with advice and a glimpse of hope for my recovery.
In November of 1988, at the age of 57, my Dad was diagnosed with squamous cell carcinoma, the second most common type of non-small cell cancer and the type generally found in current and former smokers. Dad smoked from an early age, as well as working with hazordous materials and chemicals. He grew up in a time when safety wasn’t a priority and cigarette manufacturers could add basically whatever they wanted to tobacco in order to make it more addictive and ensure themselves a steady customer base. He had some symptoms but had a smokers cough and CMT (Charcot Marie Tooth disease, a genetic disorder which appears as young as two years of age in affected individuals and destroys the myelin, the protective covering on peripheral nerves. This leads to progressive pain, muscle weakness, muscle wasting, and malformation of bones) CMT which is painful in childhood and grows worse as the disease advances, also taught us to toughen up and accept pain as a matter of course. Dad, who likely ignored any red flags that cropped up was diagnosed just before Christmas and as we gathered for the holiday his mood was determinedly hopeful that he could overcome his diagnosis. . Six weeks later on Valentines day, we believe the cancer attacked his brain so he was admitted to the hospital where his essential personality never fully returned to us. After a period of agonizing decline, he finally passed on June 8 of 1989.
In December of 2015, at the age of 56, my sister Janet was diagnosed with stage 4 adenocarcinoma, the most common type of non–small cell lung cancer. While adenocarcinoma is usually found in people who smoke or used to smoke, it is the most common type found in people who never smoked and is more often found in women and younger people. Janet went to the hospital a couple of times with nose bleeds that would only stop with the use of a device called a Rapid Rhino. When she started to have double vision, the emergency room Dr ordered a CT scan which revealed tumours throughout her brain and skeleton. Janet had a malevolent pea size tumour that resided in an inoperable area of her lungs and shot cancer cells throughout her skeleton. Hindsight told us there were hints of a serious problem but she had learned from childhood to tough out increasing back pain and fatigue because it was just CMT advancing. We took Janet to my home for Christmas but just before New Years eve, we needed to take her to a nearby hospital because she had a massive nosebleed. The following day she was admitted to the Tom Baker Cancer Centre where Drs ordered three courses of radiation to make her more comfortable. While they helped Janet, they also took a huge toll on her brain and robbed us of the incredible person she was. She suffered an agonizing decline as well and finally passed on March 12 at the age of 57.
In December, 2017 at the age of 59, I was diagnosed with stage 4 adenocarcinoma of the lung. A rotator cuff injury involving a large tear in my bicep was giving me trouble and I started to have problems with my right hip and leg that felt similar so I ignored them as I was very busy getting pots ready for Christmas sales. My leg worsened through October, November and December, requiring use of a cane then a wheelchair and incrementally stronger pain killers. My Dr took a bone scan which wasn’t conclusive for a problem with my leg so he ordered a CTScan on December 22 and when he received the results, he sent me straight over to the emergency department of a nearby hospital. For the last several months I had been walking on a deteriorating fracture of my femur that was due to a large tumour on the femur. The tests also revealed tumours covering my sacrum and tailbone, a couple of vertebrae and small lesions on my lungs. I got a pass to go home for Christmas and when I returned to the hospital a large titanium rod was placed in my femur with bolts at my knee and hip to secure it. The only ‘canary in the mine’ I had was my painful leg which turned out to be an early warning to a huge problem and has given me time to try some new treatments, do a few things I’ve always wanted to do and maybe say goodbye. My prognosis is 12 months and of course my goal is to beat that, in fact I’ve realized I really want to be 75.
An earlier warning has given me time in which I feel whole and healthy, allowing me to have a real sense of hope that I will beat my prognosis. I feel very fortunate because there is no early screening as yet for lung cancer so it is generally diagnosed in late stages where there is no possibility for treatment. My Dad and my sister didn’t get this opportunity as their story is very typical of the majority of people with lung cancer. Because there are generally few symptoms from the tumour in the lung, people are unaware there is a problem until it has metastasized and as soon as it has, the cancer cannot be cleared. The outcome is generally dismal and more people die from lung cancer than die from breast, colorectal, and prostate cancers combined. In looking for data I discovered that 1 in 12 Canadians will develop lung cancer in their lifetime which is more than any other cancer. In my original family we are 1 in 2 so far so early screening of lung cancer for my family would be a major benefit.
The stigma I referred to in the heading comes from a perception of lung cancer as a self-inflicted disease but half of those diagnosed are comprised of 15% who have never smoked and 35% who are former smokers. I’ve read that lung cancer patients and their families feel stigmatized by a prejudice around smoking, leaving them hesitant to tell others about their diagnosis. Admittedly, there is no doubt that smoking does cause cancer but generally smokers start when they are teens who feel invulnerable and are not looking at the future consequences of smoking. The manufacturers of cigarettes have formulated their product to be extremely addictive and contain over 4,000 chemicals, including 43 known cancer-causing compounds and 400 other toxins. These cigarette ingredients include nicotine, tar, and carbon monoxide, as well as formaldehyde, ammonia, hydrogen cyanide, arsenic, and DDT. Tobacco companies know that it doesn’t take too many cigarettes for their target market to become addicted and they market their product aggressively.
I have to confess that my first thought on being told I had lung cancer was that it couldn’t be – I had quit smoking 35 years before. Janet had never smoked though and we both had adenocarcinoma. Smoking isn’t the only way to negatively impact health but of the many disorders impacted by lifestyle none of the others suffer from the same level of inattention from the public and media. There are few survivors of lung cancer, therefore no large group of dedicated survivors to draw public attention to the relevant issues, raise funds, and bring about real change in researching this disease and change in the tobacco industry.
Having written this, I wanted to reflect a bit and do more research into work being done around early screening for lung cancer. The Government of Alberta was running an early screening program for lung cancer but my understanding is that it was capped at 800 participants when the new NDP party was elected. The program is still running but no further participants will be accepted. I wonder how much it costs our health care system to care for just one stage 4 lung cancer patient, against the cost of treating one stage 1 patient.
I also wonder about the stigma surrounding lung cancer as a self inflicted disease when as I said earlier, not everyone with lung cancer is a former or current smoker. There are other diseases that have been proven to be lifestyle related but blame and ennui are not cast on them to the same degree as cast on lung cancer. If anyone should be held responsible for this I believe it should be the companies who raked in profits by slowly poisoning so many people. If a percentage of their profits could be channeled to research into the treatment of lung cancer we'd save a great deal of money in healthcare and human suffering. Dying of lung cancer isn't something I'd wish on anyone and finding a cure to prevent that deserves as much attention as finding cures for any other deadly disease.
Diana Kleinloog has worked as an RN in rural health care