Wish you knew more about your diagnosis and treatment? Or maybe you wish you knew less – less of the nitty gritty details that you don’t actually need to understand to move forward but your doctors share anyway? Or perhaps you just wish you could communicate better with your healthcare team or better yet your insurance company? These thoughts cross everyone’s mind, but what then can you do? What you can do is self-advocate.
But perhaps that term itself already seems daunting on top of everything else you have on your plate. Well, in the hour-long session at Cancervention, Meghan Fitzgibbons, the Young Adult Patient Navigator at John P. Murtha Cancer Center & Walter Reed National Military Medical Hospital, and Elizabeth Saylor, the Young Adult Patient Navigator at the University of Maryland Greenebaum Cancer Center, both working for the Ulman Cancer Fund for Young Adults, broke down what it means to self-advocate, giving insightful advice to navigate the ins and outs of speaking with your healthcare team.
The session began with a discussion of what many people often do after receiving their diagnosis – research. We went over some do’s and don’ts of “googling,” which may seem rather obvious in hindsight, but people often succumb to the allure of seeking a quick answer online. Opt for the well-known, endorsed reputable websites including the National Cancer Institute (www.cancer.gov) and American Cancer Society (ww.cancer.org), sticking to the trend of picking .gov and .org sites over those that are .com (that means NO WebMD).
We continued by discussing the importance and use of clinical trials. While it may seem scary to hear your doctor say that they would like you to enroll in this clinical trial (maybe you’re thinking oh no, it’s a last resort measure), keep in mind that treatments used in clinical trials are often found to have real benefits and sometimes even fewer side effects – just think…the treatments you undergo today were once clinical trials! We also discussed the role of second opinions and the reasons you may want to seek one, such as being diagnosed with a very aggressive or rare cancer. It was emphasized that you should not feel badly every asking to get a second opinion – it is your right, but just don’t forget your manners while doing so.
A significant focus though was spent on giving tips for communicating with your healthcare team (doctors, nurses, nutritionists, counselors, therapists, social workers, etc.) – really delving deeply into what it means to be a self-advocate. Interestingly enough, self-advocacy does not mean that you yourself must be the one to approach your doctors and speak for your best interest. Instead what is essential is to “find your champion,” one who will speak on your behalf. Your champion may be a relative, a close friend, or even a nurse, on your healthcare team. And once you find your champion, elect them to be your team captain – this person will advocate for you to your health care team. It’s essential to keep an open communication going between you and your team captain, making sure they know what matters most to you. But that is not to say that you yourself cannot be your own team captain!
Whether you were recently diagnosed or have been in remission for some time, don’t ever forget that you are not alone – connect with other young adults through online or in person support groups, local meet-ups or conferences. Perhaps you feel like you missed out and want to access some of the amazing resources provided at the session? Well don’t worry, check out the Ulman Cancer Fund for Young Adults at http://ulmanfund.org/ or email Meghan at firstname.lastname@example.org or Elizabeth at Elizabeth@ulmanfund.org with questions – they are more than happy to help. Some other amazing young adult resources include – StupidCancer (http://stupidcancer.org/), YSC-Young Survival Coalition (https://www.youngsurvival.org/) , MyLifeLine (https://www.mylifeline.org/), Cancer Survival Toolbox (http://www.canceradvocacy.org/resources/cancer-survival-toolbox/) and of course the Young Adult Cancer Connection itself – to name just a few!