Sorting through the maze of information at your fingertips
Kathryn E. Vinson, MS, CCRC
Be Your Own Greatest Advocate – We’ve all heard the mantra “you have to advocate for you” at one time or another during our battles with cancer. At face value, it sounds simple enough – stand up for your rights, if you aren’t being heard – speak louder, etc. However, beyond the word of our docs, how do we know if we are receiving the best treatment that is available? How do we know if there is a study going on that may provide an amazing new treatment? Let’s take some time today to visit about how we can do just those things, without falling down the rabbit hole of internet hype and scary stories.
Second opinions and new doctors
In, “Its Your Right to Make Changes”, fellow Cancer Horizons writer and survivor Mandy describes when she knew it was time to find a new physician. I too have had to find a new doc when I wasn’t being heard – it was one of the best decisions I ever made. Your relationship with your doctor is one of the most important that you will have in this journey. It should be an open, caring, two-way dialogue about your treatment. I say two-way dialogue because it is vital that the wants and needs of you and your family be addressed in your treatment plan. Don’t be afraid to speak up if something doesn’t sound right to you. If you have questions – ask them. I guarantee you – there is no such thing as a stupid question in this battle, and your doctor has probably heard it all. Don’t be shy.
On the topic of asking questions, a doctor should never become angry if you ask for a second opinion. Depending upon the stage and aggressiveness of your disease, there may be a timing issue, but a mature physician will understand your need to have this information and should help you in this process.
Let’s be honest – who here hasn’t entered symptoms into their favorite search engine from time to time. I’ve been guilty of it on multiple occasions, especially when one of my kids is sick. All this usually accomplishes is scaring the doo-doo out of you until you get to a doctor. If you do choose to go to the internet to do research, here are some guidelines. For those of us battling cancer, we have typically received our diagnosis before we start our research, so we have the advantage of not searching by symptoms, but by the name of a specific disease.
For basic information such as typical treatments, staging, and statistics, my go to source is the American Cancer Society at www.cancer.org. Other great sources of information include The Mayo Clinic, The Cleveland Clinic, and The MD Anderson Cancer Center. If you are confident in your research skills, a great way to find the latest in academic and clinical research is via Google Scholar. With this website you can enter your search terms, like any other search engine, but you also have the ability to restrict it to current articles. The benefit here is that it is only going to show you peer reviewed articles, but the downside is that they can sometimes require a dictionary to read, and sometimes only a synopsis is available. Science Daily is another good source that takes those peer reviewed articles and gives you the “Reader’s Digest” version. Lots easier to understand and is broken down by pages relating to different types of cancer.
If one of these articles strikes your interest, you can search clinicaltrials.gov to see if a clinical trial is enrolling in your area. Always discuss these options with your doctor.
What better way to learn about the journey of a fight with cancer than to talk to a fellow cancer warrior? Reaching out to the various cancer associations can provide you not only with the camaraderie of fellow patients/caregivers, but they can also point you in the direction of specialists in your area, financial assistance programs, and newsletters specific to your type of cancer. Closed Facebook Cancer Groups also act as support groups, and provide privacy via the security settings. I can personally speak to the comfort one of those closed groups provided me when I was battling thyroid cancer. Its has since been an honor to be there for other cancer patients, essentially “paying forward” the love I received during my battle.
Have you had experience advocating for yourself or a loved one? Do you have a source of information that has been invaluable to you? We’d love to hear from you if you’re so inclined – you can reach us via our Contact Us page.
As always, much love, abundant blessings, and many prayers to all of the cancer warriors and their families.