There is no teacher quite like personal experience. Whether you are dealing with your own diagnosis or helping someone else, you become deeply familiar with cancer’s many practical and emotional challenges.
Facing cancer can inspire people to help others navigate their own cancer journey. On November 9, 2022, Cancer Commons presented a free webinar featuring three passionate advocates who have drawn on their own experiences with cancer to make a difference for others:
- Cancer Commons CEO Rebecca Driscoll, who moderated the discussion and presented information on biomarker testing and pathology reports
- Courage Groups founder Mike Looney, PhD, who shared how his organization supports caregivers
- We’re in This Together (WiTT) CEO Rahul Mahadevan, who presented his new platform that makes it easier for patients to ask for support
“We are all motivated by our unique experiences,” Driscoll said. “Our aim for this webinar was to provide patients and caregivers with powerful tools and tips that could really make a difference in moving their journey forward.”
This was the fourth event in the Pat Looney Educational Series for Client Empowerment—a series of webinars that provide critical information to people dealing with cancer.
“My mom’s journey really shifted when she discovered Cancer Commons,” said Dr. Looney’s daughter Caitlin Looney Landesberg, whose family sponsors the series, in her opening remarks for the webinar. “It was really her life’s goal from that point on to share Cancer Commons and its many benefits to as many people as possible.”
Here, we are pleased to outline the top highlights from the event, which drew audience members from across the US and abroad. A video of the entire webinar, Tools and Strategies to Take Your Cancer Management to the Next Level, is also available to view and share with anyone facing cancer.
Accessing and understanding your pathology report
One of the most powerful pieces of information for a person facing cancer is their pathology report. This report is created by a pathologist, who views a patient’s cancer cells under a microscope to determine their precise diagnosis. The report with that information is then sent to the patient’s medical care team or treating physician.
With a 22-year professional background in cancer testing, and years of helping family members and friends navigate cancer, Driscoll has found that obtaining a copy of the pathology report can be critical in understanding your or your loved one’s cancer, and what your treatment options are.
“I’m a true believer that knowledge is power and when we have the right knowledge it just makes things a lot easier,” Driscoll said in the webinar.
However, many people run into difficulties in accessing their pathology report. Driscoll noted that patients should receive a copy of their pathology report from their physician as soon as the report is available. But if that does not happen, you can call the pathology laboratory that performed the testing directly and ask for a copy of the report.
Driscoll also emphasized the need for patients to ask their care team about the possibility of using biomarker testing, which is an additional way to understand a diagnosis, because it can also illuminate which treatments might work best. For more information on biomarker testing, you can see our previous webinar, Testing Matters—Understanding Cancer Biomarker Testing and How It Applies to You.
“We highly encourage you to really understand the pathology report and understand biomarker testing, because they will determine your best treatment options,” Driscoll said.
She urged viewers to reach out to Cancer Commons any time for guidance on how to obtain and understand their pathology report, and how to seek additional pathological testing to confirm the results. Cancer Commons can also help people navigate the various possibilities for mitigating the expense of various forms of testing.
Helping caregivers with Courage Groups
Next, Mike Looney, PhD, introduced Courage Groups, the organization he founded inspired by his experience as both a caregiver during his wife’s breast cancer journey, and as a prostate cancer survivor himself.
As a caregiver, “I had virtually no guidance or assistance,” Dr. Looney said. “So I really became sensitized to the value of the caregiver… enabling and empowering caregivers was the ultimate goal that I wanted to get involved in.”
With a background in psychology and psychotherapy, Dr. Looney founded Courage Groups as a way to bring together caregivers who could share resources and support with each other. He quickly realized their experience could be enhanced by the development of what he now called the Caregiver Dashboard, a tool that enables caregivers to quickly report and review the status of the patient’s disease and wellbeing, as well as their own wellbeing.
Dr. Looney outlined three elements of the Caregiver Dashboard that make it a powerful tool. First, it gives caregivers a clearer sense of the current state of their and their loved one’s cancer experience, and where things may be headed. Second, it improves communication between patients, caregivers, and their care teams. Third, it enables patients and caregivers to be better acquainted with the key details of their disease, empowering them to be more active early on in their own treatment.
Courage Groups emphasizes the importance of caregiver wellbeing, which is often lost in the process of caring for a person with cancer, leading to exhaustion and burnout. “It gives caregivers a better chance to be empowered and really help their loved one,” Dr. Looney said.
Helping patients ask for what they need
In 2021, Rahul Mahadevan was diagnosed with stage 3 prostate cancer. “I, as a patient, needed help, but I struggled asking people to help me,” he shared during the webinar.
Mahadevan’s reluctance to impose or be a burden on others was far from unique. He noticed that so many other patients struggle with asking for non-clinical support—such as financial assistance or help with transportation or chores—as they go through treatment, often to the detriment of their mental and physical health.
“Patients shouldn’t see asking for help as a burden on somebody else but should see it as an opportunity for somebody else to help them,” Mahadevan said. “By not giving that opportunity, you’re basically depriving them of the ability to help you.”
His solution? A patient support registry, similar to a wedding registry or a baby registry, that makes it easy to ask for support without feeling guilty about asking.
Launched in spring of 2022, WiTT (which stands for “We’re in This Together”) enables patients to create a registry outlining the various types of support they need and share the link to their registry to easily invite other people to support them. This service is free of charge.
“Patients who post on social media and ask for help are surprised at how much help they get,” Mahadevan said. “There are people who want to help. Just give them a chance.”
Driscoll noted that she has used WiTT to help a friend set up a registry to ask for the transportation support she needed after her condition declined to the point where she needed a wheelchair.
“I just commend you for taking your own experiences and your observations while you were going through treatment and building this tool because I can see how it’s going to have tremendous impact,” Driscoll said.
Navigating cancer together
Driscoll, Mahadevan, and Dr. Looney wrapped up the webinar by answering audience questions and asking the audience to spread the work about WiTT, Courage Groups, and Cancer Commons to anyone who could benefit.
“It really comes down to becoming much more enabled and much more empowered yourself, whether you’re a patient or caregiver,” Dr. Looney said. “And the earlier you do that the better.”
Driscoll encouraged viewers to send any additional questions to firstname.lastname@example.org. Meanwhile, she invited anyone facing advanced cancer to sign up to receive one-on-one help from Cancer Commons’ experts, many of whom have had personal experiences with cancer or similarly challenging medical conditions.
“If you or anyone you know is dealing with advanced cancer and you need support in any of the areas that we talked about today, or just need some guidance, please reach out to us. We are here to help you,” she said.