Luck is not the word that came to mind when Lesley Stephen was diagnosed with Stage IV metastatic breast cancer in 2014.
The 48-year-old mother-of-four had gone to her family doctor with a cough that just wouldn’t go away, only to discover a few small tumors in her breast.
And lungs.
And liver.
And bones.
Several treatments succeeded, then failed, including one which Lesley had to fund herself after a battle with the Scottish NHS.
The cancer spread to her brain, and Lesley was almost out of options. The Edinburgh resident lived in three-month gulps of time, cramming ‘family memories’ into anxious days between scans. Told to pack her bags and get her affairs in order, she booked what she expected to be her last family vacation, to New York City. She planned her funeral and made memory boxes for her children, aged 8-16.
Then she got the call, inviting her to take the last spot in a 36-person Stage 1 clinical trial at the Beatson Cancer Centre in Glasgow, testing epertinib, an oral reversible dual tyrosine kinase inhibitor of EGFR/HER2.
“I could tell within a fortnight that it was working. I’ve been on it ever since. I still have a tiny tumor on my liver, but I feel fantastic. It’s been a miracle.”
Lesley, a former communications professional from Edinburgh, now devotes her days to advocating for patients and educating the public about precision medicine.
She’s already made some progress. After being denied access to one promising medication, the monoclonal antibody ado-trastuzumab emtansine (Kadcyla™, Roche), she banded together with a few other breast cancer patients to successfully get it approved as an NHS treatment option.
But a much bigger, more fundamental change is needed, Lesley says.
Despite having two extremely well-informed, open-minded oncologists, Lesley did not get her tissue samples submitted for genetic testing.
What’s the point, many doctors ask, when it is unlikely they will be able to act on the results? There just are not enough treatments available for many cancers, especially after initial treatments have failed. And unlike elsewhere, where medications are increasingly being administered based on tumor biology rather than location, doctors in the United Kingdom are not allowed to prescribe drugs “off label” -- they have to be specifically approved for each indication.
In the end, the precision medicine advocate never technically participated in precision medicine per se.
“It’s pure chance that it’s working,” Lesley says. “We need to remove the element of chance to improve survival in patients.”
Odyssey for Answers
Ask Lesley about her cancer journey, and she’ll scrunch up her nose.
“I hate that term, ‘journey.’ It makes it sound like you’re going on a cruise. It certainly is not a cruise.”
Lesley has certainly had to navigate some rough waters since she received her shocking diagnosis. And much of it she steered on her own. Even though her mother was in the midst of her own struggle against colon cancer at the time Lesley was diagnosed, Lesley admits she didn’t really understand what “metastatic” meant, or the prognosis, until she faced it herself.
She undertook intense self-education, and quickly became frustrated with the information available. Online reports were often confusing, conflicting, or not relevant to her particular circumstances. Clinical trial databases were incomplete or unreliable. Doctors didn’t always cooperate, and the local health authority definitely did not on several occasions.
“I was fighting tooth and nail against bureaucracy at a time when I should have been focusing on my health,” Lesley says.
Most members of the public have no idea what precision medicine is, and they think clinical trials are only available as a last resort, she says. Even those in the cancer community are largely unaware. Meeting up with a dozen other cancer patients at a cafe one day, Lesley learned that none of them had ever had a discussion with their doctors about clinical trials.
“Some doctors assume you wouldn’t want to travel to try another treatment,” Lesley says. “But when your life is on the line, you will do anything to extend it. Especially as women are getting diagnosed earlier and earlier. They have young families. It is more than just their lives on the line.
“All us patients want is hope. Even if it’s sometimes misplaced.”
Quest for Change
Lesley has become “that person” - friends of friends are sent her way when they receive their own shocking diagnoses, and she does research and trawls clinical trial databases on their behalf. She’s determined to help them avoid the cyclops, sirens, Scylla and other monsters she faced on her cancer odyssey.
Her advice?
“Don’t leave it until the end of your treatment to seek out clinical trials. By then, you might not qualify, or you’ll be too ill to benefit,” she says. “If your consultant doesn’t agree to try different treatments, then change consultants.”
She’s also become involved on a larger scale, as a patient representative for the National Cancer Research Institute (NCRI), Cancer Research UK and Breast Cancer Now, as well as a Trustee for Make Seconds Count. It was chance that aligned Lesley with ICGC -- she was introduced to ICGC director Andrew Biankan through a friend, and ended up participating in an event where he was speaking.
She’s hoping her involvement will help bring changes, large and small, to the lives of patients in the UK and around the world.
Some solutions seem simple. Add informational material about precision medicine and clinical trials to clinic waiting room tables and television sets, where there is a captive audience of patients, she suggests. And while oncologists might be overbooked, oncology nurses often spend a lot of time with patients; arm them with information about all of the options.
Others are much more complicated, such as expanding drug options for metastatic cancer, ensuring greater access to them, and making genetic testing standard in that patient population.
“People should not be subject to postcode lotteries in order to get access to life-saving medicine,” she says. “It’s really frustrating to think about how many more people could be treated. The system needs to change so that we can access drugs approved for other uses.”
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