The irony is hard to bear … even never-smokers get lung cancer.
For some time Jack LaRocque noticed a small flickering light in his vision, a spot on his retina, which in April 2018 alerted his optometrist to an ultimately alarming diagnosis.
“After two visits to the optometrist, she saw something in the retina of my left eye that she couldn’t identify, so she sent me to the opthalmologist,” Jack began. “He looked at it and said, ‘I’ve never seen anything like it.’”
Age 64 at the time, he was referred to another opthamologist, who said the same thing.
“So I’m getting used to hearing this a lot,” said the longtime Fruitvale resident, who still carries a healthy, if not subtle, sense of humour.
The father-of-four and proud grandfather eventually visited an ocular oncologist at the University of British Columbia, who said the same thing, then set him up with a battery of blood tests and x-rays.
“The blood tests were all cancer related blood tests, and all of them showed nothing,” Jack recalled. “But the chest x-ray showed a nodule about an inch in diameter in my left lung, so that sort of got the ball rolling.”
In July, the LaRocques travelled to the cancer clinic in Kelowna for more tests, which confirmed seven of 10 lymph nodes of his lung biopsy were malignant.
Another specialized imaging exam called a MRI, confirmed the cancer had spread.
“What they told us at that point was that he had brain mets (metastases) too numerous to count,” said Jack’s wife Elaine. “It had spread to the brain, and at diagnosis, he was Stage 4.”
Jack underwent intense radiation treatment for five days, before returning home.
But, the malignant tumor in his lung turned out to be a rare form known as ALK-positive lung cancer, caused by a defect in a gene called anaplastic lymphoma kinase (ALK) that is often misdiagnosed and mistreated.
Only about four per cent of all non-small cell lung cancer patients are diagnosed ALK-positive, and the most likely demographic to contract ALK are women (65 per cent), people of Asian descent and people that have never-smoked.
Jack is a Teck retiree, where he worked for 40 years.
But there is also no known correlation of ALK-positive lung cancer with environmental toxins, including second-hand smoke, asbestos, and air pollution.
In fact, there is no known cause or known cure.
Untreated, ALK-positive spreads quickly through the lungs and to the brain, as it did with Jack, so medications that reach the brain are of utmost importance.
Jack’s doctor recommended he take a targeted genetic mutation therapy medication made by Roche Pharmaceuticals - a medication that would cost a prohibitive $12,000 per month.
“Dr. Scotland did it all,” said Elaine, referring to Dr. N. Scotland, a dedicated Trail-based Oncologist.
“He appealed on a compassionate basis to the drug company and they did provide it, and they were excellent.”
After the first year of treatment, the BC Cancer Society began paying for Jack’s medication, and the family was able to avoid a financial burden that many carry.
While Jack and his family cope with a cancer that has no known cause or a cure, the onset of the pandemic did not make it any easier.
Yet, the LaRocque family remains a strong support system, as does the ALK-Positive Support Group and the Facebook support group they’ve since joined.
Their daughter, Kate, a talented pianist, held an online concert/fundraiser for the LUNGevity Foundation on Aug. 18 in honour of Jack’s 67th birthday.
All proceeds went to ALK-Positive cancer research, and proved a meaningful way to help her father and all who have been affected by lung cancer.
And importantly, the fundraiser was to help debunk the notion that only smokers suffer from the disease.
“Anyone can get lung cancer, and it’s seldom diagnosed early enough to be readily treatable,” said Kate on her fundraising post.
“Advances are being made in targeted therapies, designed to target specific gene mutations in lung cancer, like ALK, but much more research is needed.”
While early symptoms of ALK are hard to identify, the LaRocques encourage people who have experienced subtle symptoms like fatigue, shortness of breath, a persistent cough, shoulder or chest pains, swollen lymph nymphs, or a strange spot on your retina to see their doctor or a specialist and ask tough questions.
“We all need to be aware of it,” said Elaine. “You don’t have to be a smoker, you just need some lungs, that’s all it takes to get it.”
The medication has helped Jack significantly, but the mean life-expectancy for those with ALK-positive is less than five years, especially if caught at Stage 4.
The ongoing development of new drugs lends some hope for an extended life expectancy, although there are no guarantees.
Jack continues to struggle with fatigue, but he is thankful for each moment, adding, “We’re just trying to enjoy the best life that we can.”
November is Lung Cancer Awareness Month, and a good time to get checked or help raise funds for research with a donation.
Facts: More patients die each year of lung cancer than breast, pancreatic and colorectal cancers combined.
About 4 per cent of all lung cancers have the ALK- rearrangement. This is the new face of lung cancer, only discoverable by molecular testing. Ideally this should be done at initial biopsy.
According to the 2019 Canadian Cancer Statistics, 70 per cent of lung cancer patients are diagnosed at a late stage (stage 3 or 4). Additionally, almost half of all lung cancer cases diagnosed in Canada are stage IV, indicating that the cancer has spread throughout the body.
Lung Cancer is the most common cancer worldwide, as well as the leading cause of cancer-related deaths.
To learn more about lung cancer and/or to donate go to lungcancercanada.ca or lungevity.org.