Laura Gheorghiu’s mother didn’t usually go to the doctor for just a cold. After she moved to Québec four years ago, it took a long time to get a family doctor through the public healthcare system and, until then, seeing one meant sitting for hours in a walk-in clinic. But she did seek care for a cold late last fall. For one thing, she finally had a doctor. For another, she had a really bad cold.
Her doctor said she had pneumonia, but he also found something far worse in her lungs—cancer. “He did an X-ray and the rest is history,” says Laura (above), whose mom came to Canada from Romania with her and her twin sister when they were seven years old.
Next came a round of scans and biopsies, and in April Laura’s mom learned she had small cell lung cancer (SCLC) in one lung as well as in nearby lymph nodes. Looking back, Laura suspects there were signs of her mom’s cancer well before the bad cold that sent her to the doctor. A year and a half ago, for example, Laura’s mom went to the Emergency Room for severe shoulder pain, which can be caused by a lung tumor pressing on a nerve.
SCLC is the most aggressive kind of lung cancer. It’s also the rarest, accounting for only 10–15% of cases. “SCLC is treated like an ‘orphan disease,'” says Laura, who threw herself into learning about lung cancer so she could advocate for her mom. “There is little research, there are few specialists, and there are not as many targeted drugs.”
Surgery is not an option for advanced SCLC, and her mom’s oncologist discouraged genetic testing. “The view in Québec is that you can get your tumor tested in the US but we can’t act on the results here,” Laura says. “The cost of testing is not covered and neither is any recommended treatment plan.” So her mom began chemotherapy and radiation in May, and is scheduled to finish this first-line treatment soon. “Hopefully, the cancer will go away,” Laura says. “There’s a 25–30% chance and I want her to win this lottery.”
In case she doesn’t, Laura is researching next steps. “You have to educate yourself almost more than medical providers,” says Laura, who as a lawyer is a skilled researcher. What she’s found is not encouraging: the standard second-line treatment is palliative care. “There is no plan B,” she says. “There is also no maintenance therapy if the first-line treatment is temporarily successful—you just sit and wait for progression, wasting an opportunity to nip it in the bud for good.”
In hopes of finding options, Laura calls researchers to ask about clinical trials for SCLC. But she has yet to find any in Québec, and it wouldn’t do any good to find a trial elsewhere in Canada, let alone in the US. Québec’s public healthcare hardly ever covers treatments elsewhere. “If you want to participate in a trial in the US, you have to pay for the ancillary standard of care on your own,” Laura explains. “That easily adds up to hundreds of thousands of dollars.” Likewise, treatments that are available in the rest of Canada are not necessarily covered in Québec. This is because approval of drug coverage is province by province. For example, Canada approved Yervoy for melanoma in 2012 but Québec denied approval of this immunotherapy in February 2015.
“How can you get access to innovative testing and treatments when we are so behind the curve?” Laura asks. “It’s incredibly discouraging and difficult.” But she is not giving up. The manufacturers of two immunotherapies (Opdivo and Keytruda) have compassionate use programs, and she plans to lobby for expanding them to cover maintenance and second-line treatments for SCLC. “The data from preliminary trials is there,” she says. “And with SCLC, you can’t afford to wait.” Laura invites anyone who would like to join her in this effort to reach out to her on Twitter.
Besides helping her mom, Laura is helping Lung Cancer Canada survey differences in healthcare access for lung cancer patients amongst the provinces. There is also a push for a national drug coverage program in Canada by 2020. Even if successful, however, this won’t come in time for Laura and her mom. “We need treatments that are cutting edge now,” she says. “My mom does not have five years to wait for national coverage to be implemented—if she needs another drug, she needs it fast.”
How does Laura take care of herself while working fulltime by day and advocating for her mom by night? “There’s not always strong emotional support for lung cancer families,” she says. “People are often overwhelmed by my drive to beat this. There’s a general belief that there is no potential for long-term remission, and that the only treatment is palliative.” And while online support sites are helpful, she cautions against spending too much time on them due to the potential emotional toll: “When you get to know such amazing, strong people, it’s hard when they are taken from us.”
One of her best sources of strength is her mom’s spirit. “She never gave up in the face of incredible odds, and this taught me that there is often a way if you fight hard enough,” Laura says. She also gets comfort from stories of cancer patients who don’t give up. “I get hope from people with lung cancer who kept trying and found treatments that have successfully extended their lives for many years,” she says.
Now retired at 60 years old, Laura’s mom was an economist and financial accounting professor at universities all over Canada. “To get us out of communism’s reach, she left behind a flourishing career and the rest of our family to go into the unknown that was Canada,” Laura says. “She had to rebuild her life from zero—in exchange, she gifted my sister and me with a wonderful life.”
On good days, Laura says, her mom is still vibrant: “She gardens, is a rock for her daughters and her aunt in Romania, and makes the most amazing desserts. To catch those times, Laura sees her mom as much as she can. “All our lives have a limit, but cancer really puts that into the forefront,” she says. “You have to grab the time you have with both hands and really live it—you have to love, laugh, and enjoy every moment.”
Follow Laura on Twitter.