When a cancer diagnosis happens, the initial shock is quickly followed by an avalanche of information. Some comes from oncologists, some via well-intentioned family and friends, and a whole lot from Doctor Google. It’s a daunting task for even the most educated of medical professionals, and nearly impossible for the Average Joe to digest. Along with everything else in your world getting turned upside down, patients now have to make life-or-death decisions based on multiple sources that often conflict, while trying to understand what the heck just happened to their “Happily Ever After.”
There are people whose job it is to help facilitate that information for you. Patient advocates are the voice for those who need to navigate that decision process but could use assistance sorting through the minutia. Catherine Poole is one of those people.
A melanoma survivor, she began the Melanoma International Foundation (MIF) after experiencing the difficulties described above with her own treatment. She reached out to me last year and asked if I would be able to make their annual Safe From The Sun walk and accept a Patient Advocate Award. What I received that day was a nice glass trophy, but what I really got was access to an expert in the melanoma arena. It came at the absolute right moment, as we were looking for a Plan B after my first trial was unsuccessful. Catherine spent several hours going over options with us, and helped us find the Holy Cross trial that we eventually chose. Without her assistance, I don’t know how I would have successfully gotten to where I am now.
I would like to wlecome Catherine as our guest today:
T.J.: Your story, and organization, is very specific to Melanoma, but the message often applies to all cancers and even other illnesses. Tell us what advice you would give to anyone facing a decision for a serious health issue.
Catherine: Any serious illness requires knowledge, and therefore empowerment, to follow the best path to better health. The patient is usually least able to do this, because the “flight” and “fright” emotions they may feel puts them in the twilight zone. My number one suggestion is to get a support person on board: a family member, friend, and/or a professional advocate to help you comprehend the many (and potentially confusing) facts you will be deciphering.
Make sure you and your advocate are using scientifically-backed sources from the Internet. MIF has the HonCode designation, earned by having our forum and website carefully reviewed and monitored for accurate information (The NCI and Mayo Clinic are good examples of other sites that have the HonCode certification). Find reliable information and tips for newly diagnosed patients, like the MIF’s primer for new melanoma patients.
Despite feeling safer closer to home, go to treatment centers known to specialize in your disease, and find the experts through the latest research published. Get second opinions from these experts when possible.
T.J.: How does an advocate work helping patients, and what do they bring into the mix that patients don’t have by themselves?
Catherine: I strive to be an impartial party that is caring, but focused on facts that I know are best for a patient from quality of life to long-term survival. When you are closely connected to someone, or trying to do this by yourself, it is difficult to think clearly, and the mission to find the best treatment gets muddled. As an advocate, if I don’t know an answer, I can call on my wonderful scientific board of melanoma experts. The amazingly quick responses I get are an advantage most patients don’t have.
T.J.: How did your melanoma experience shape the path you have chosen – to be an advocate, foundation president, and author on this disease?
Catherine: I was 5 months pregnant and very scared, with a 2 year old I was anxious to see grow up. My family support was non-existent. So I went on a fact-finding mission, located the best oncologist I could, and ventured to disagree with my local doctor. Somehow, I found the strength – which we all have inside of us – to do all of this alone.
During this, I discovered an alarming amount of misinformation about melanoma. I enlisted my oncologist to help me write a balanced book with scientifically-backed information. He remains a great source of support to this day. This yearning to have correct information strongly influences all of my work; whether moderating our forum, talking to patients, or furthering MIF’s patient-centered mission – accuracy is vital to finding the right answers!
T.J.: You mention disagreeing with your local doctor on treatment options, and recently wrote a blog post on the subject. How can a patient “disagree” with an expert productively?
Catherine: I disagreed with my doctors regarding my treatment, and encourage patients to remember who hires whom – you are paying for their service. In other nations, doctors are also called consultants; I like that term. We treat our doctors with high esteem, but this has its limits. Don’t worry about your doctor liking you if you disagree or ask for another opinion. A judicious doctor welcomes other opinions, especially expert ones. Medicine is an art as much as a science sometimes, open to interpretation by specialists. You need someone very smart in your corner.
T.J.: Tell us what the MIF does to help patients explore their different treatment options.
Catherine: When a patient calls or emails, we determine what their pathology report has shown, and the status of the disease and its attributes. That is where we glean the best information on how to proceed. Sometimes, a second opinion on the pathology is a good idea. MIF spends a lot of time talking to patients and their families, discussing all of the options you might have, then letting you decide what works best. There are many intricacies to this that a generalist navigating the system can’t always do.
We have two special programs. Our Patient Access Grant program enables patients to travel to experts and clinical trials. We support research by getting patients to trials; there is no research (and medical breakthroughs) without patient participation. The other program is our annual event, Safe from the Sun. It is a wonderful way to promote awareness, support our services, and take part in free screening. Finding melanoma early is key to our mission, too.
In your case, finding a trial for the most promising drug near your home was a priority. As a dad with a young family, you needed stability, and we were lucky to find this for you. Happily, it has turned out well so far.
Thanks to Catherine for spending time with us to shed more light on the roles advocates play in helping cancer patients find the right treatment options. Her tireless work has benefitted hundreds of patients in the melanoma community. The MIF’s Annual Safe From The Sun Walk is April 27, 2014. For more information, go to melanomainternational.org
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »