Published 07 October 2019
After a cancer diagnosis, time is of the essence. Clinicians face enormous pressure to quickly recommend the best possible therapy. As the amount of data available from various sources grows exponentially, both healthcare professionals and patients struggle with finding the relevant information necessary to make the right treatment decision. Yvonne, a former cancer patient, shares her story to show why greater patient access to medical knowledge is critical to improving cancer care.
For patients, a cancer diagnosis changes everything. Suddenly many unanswered questions arise and patients deserve timely answers as to the course of their treatment.
A combination of in-vitro diagnostics, genomic profiling and medical imaging provide the answers about the type of cancer, its stage, and the specific genetic mutations involved. Expert insights from cancer and other medical specialists, with aid from clinical decision support tools, help identify personalised therapy options. However, many cancer patients still have additional questions regarding the proposed treatment plan or even feel the need to seek second opinions. Patients want confidence that the recommended therapy is the best option to become healthy again.
German native Yvonne Ulrich, a former breast cancer patient, understands these questions and the uncertainty of life with cancer all too well. Yvonne believes that patients deserve to be educated proactively about the disease, all possible treatment options and insights into similar cancer cases.
Yvonne’s cancer journey began nearly a decade ago through a close friend who was diagnosed with triple-negative breast cancer. Despite aggressive treatment, the friend – a single mother – died within a year. Her friend’s experience triggered a need for Yvonne to understand her own cancer risk. She turned to her mother to learn more about the family’s medical history. Although her mother had been adopted, Yvonne’s research was able to discover that her grandmother and her cousin had died of breast cancer. This information led Yvonne to seek genetic counselling for herself and her mother. Based on the family history, their genetic risk of developing breast cancer was assessed to be fairly low, only about 13%, and no genetic testing was recommended. Discussing the results with her gynaecologist, Yvonne opted for six-month check-ups with ultrasound exams. In 2014, she felt a lump.
“At first I was told it was fine,” Yvonne recalls. “But I felt that it was not fine. I had that gut feeling that something was wrong. I had a mammogram followed by biopsy.”
The time between biopsy and the final result was “the most terrible week in my life,” Yvonne says. “Knowing I most likely have cancer, but not knowing how bad it is, to wait day by day until the next doctor’s appointment was very stressful.”
The pathology report confirmed that Yvonne had ductal carcinoma in situ (DCIS) with progesterone/oestrogen (PR/ER)-positive breast cancer. Cancer was the bad news. The better, if not exactly good, news was that it had been found relatively early.
Yvonne had arrived at that strange intersection so many cancer patients encounter when having to decide what to do next: pathology reports that Yvonne understood only partially. A treatment plan that included surgery, radiation and hormone therapy but not chemotherapy. Many decisions to make but a lack of knowledge and trusted resources to educate herself.
“I went home with a new reality in my life,” Yvonne observes. “I had so many questions: what does the pathology report mean, is my treatment plan the right one, are there any other treatment options or recommendations? What can I do myself to get cured?”
To learn more and gain different insights Yvonne sought a second opinion at a breast cancer clinic in Heidelberg. But after a four-hour drive from her home, the clinic told Yvonne the CD she’d brought with her was unreadable. She insisted there must be a way to read the data and the problem was resolved.
This near-failure of technology left Yvonne wondering about her diagnosis in a way that couldn’t be answered with a short doctor’s visit, a pathology report or treatment plan: Why was there no single electronic platform where the care teams and the patient can access all the medical reports, treatment plan and other information on how to manage the disease, including educational materials that also referenced non-conventional therapies.
Patients like Yvonne believe in actively managing their cancer
The explosion of patient groups and health information sites available online also presents a challenge – which sources can be trusted? Google often becomes the only option to learn. Yvonne feels there is a gap in cancer care that should be addressed. Patients need more than a brief conversation with a doctor and leaflets listing cancer patient communities and websites. They need trusted cancer management solutions that include all individual patient data, tailored treatment options and lifestyle guidance. This should be supplemented with ways to communicate with the medical teams, as well as options to contact other patients with a similar diagnosis, allowing them to compare treatments and outcomes and to generate hope.
“I want to do what I can to manage my disease, which is why I wish the medical team had given me a log-in to a portal with all my patient data and other relevant information such as links to publications and clinical studies, including outcomes-based research,” she says. “This is all possible in our cloud-based, data-driven world, but it’s just not there for cancer patients.”
Yvonne read books, joined online groups and found experts to learn about lifestyle changes, including meditation, diet and daily exercise to support the healing part of her cancer journey. Armed with a greater understanding of her disease and treatment options, Yvonne had two surgeries in 2014 followed by 30 radiation therapy treatments spread over a two-month period in early 2015. Recovery took time, but her lifestyle changes helped build resilience and strengthen the immune system. She is now on hormone therapy but copes with the side effects of muscle and joint pain through daily exercise.
Yvonne’s life post-cancer diagnosis includes running six mornings a week, accompanied by Kaethe, her “sport pug”. This lifestyle reflects her realisation that she is ultimately in charge of both her cancer experience and her health overall.
“Remember, cancer doesn’t always have a devastating outcome,” she says. “It’s possible to have a great life during and after treatment.” Yvonne encourages patients to participate actively along every step of their cancer journey, including treatment planning and follow-up care.
“As patients, you have many meetings with doctors and they make the recommendations,” she says. “But in the end, it’s the patient who has to make the final decision.” When time is critical, digital solutions can be a valuable resource for education and for helping to make these decisions with confidence.