Dear Oncologist, This Is What We Need You to Know
As a metastatic breast cancer (MBC) patient, it is very important that you have a clear and loud voice when you are in consultation with your oncologist because your treatment has complex clinical requirements and impacts the psychosocial quality of life issues.
Be your own advocate
At the 2019 San Antonio Breast Cancer Symposium, a poster by Marina Kaplan, from Living Beyond Breast Cancer, carried out a patient-led and patient-informed qualitative study using peer-to-peer social media. Kaplan suggests patient voices need to be heard to ensure high-quality patient-centered healthcare delivery and positive outcomes for MBC. Since previous studies focused on early-stage breast cancer, this study aimed to inform oncological healthcare delivery for MBC patients.
Requests for input on three social media channels drew 36 women and six men to participate in the interviews. To ensure representation by age race and gender, stratified sampling was used. The questions and prompts were:
- What would we like our oncologists to know/do to make MBC oncology better?
- What behaviors instill trust and confidence?
- Tell stories of excellent patient-centered approaches
A follow-up poll posted on social media identified priorities derived from qualitative data with interview sampling proportionate to age, race, and gender.
MBC patients offer top recommendations
Patients were keen to feel their treatment was individualized and that the practitioner was thinking outside the box. Respect and empathy were important, as was responsive communication, and shared decision making. Importantly, scan results need to be delivered quickly, and routine brain scans are carried out.
It was important that patients felt supported, in that clinical trials were searched out early, and after every re-staging visit. They wanted expanded access to trials, and to those that offered, a right to try. Care coordination within and between centers was important, as was good communications via connections to community and online resources. Finally, palliative care needs to be discussed.
Communication between you and your oncologist
There are many ways you can improve communications with your oncologist. Most important is that you come with your questions prepared, and be sure to take notes. If you can persuade a friend or relative to come with you, all the better. Two pairs of ears are better than one. And, let’s face it, your mind can go blank if the news you’re getting is poor.
So, establish goals for your conversation, and be clear what matters to you. Don’t keep secrets. Understand the specifics of your condition, and, finally, really listen.
Kaplan reached the following conclusions for high-quality oncology care:
- The individualized approach should be based on patient needs, disease characteristics, mutations, and comorbidities
- Access to clinical trials should be facilitated
- Access to drugs via expanded access/right-to-try should be facilitated
- Patients should be treated with respect and empathy
- Decision making should be shared
- Care must be coordinated
- “Non-medical” needs should be addressed
Knowledge is power, so become your own advocate and get the best care possible.
Have you ever changed your treatment regimen because you were experiencing side effects?