Tag Archive for: tracy rode

Chicago – All That Jazz AND a Bunch of Cancer Nerds

Next week is the most exciting time of year for those of us who work in and around cancer. The American Society of Clinical Oncology takes over Chicago the first weekend of June every year for its annual meeting (known simply as ASCO), and our PEN team will be there in full force! With over 45,000 attendees expected, it gives us a great opportunity to highlight our programs that provide impact for cancer patients, their care partners, and healthcare professionals. We have a booth, courtesy of ASCO, and can interact with researchers, providers, fellow advocates, and survivors.  

More than anything, being in ASCO’s gigantic exhibit hall at the McCormick Center gives you a feeling of just how many individuals devote their careers to fighting cancer. And with all the great news releases that are sure to come next week as important research results are reported, the sense of progress and hope is tremendous. 

Be sure to follow PEN on social media as we will share our experiences and help you understand the advances in treatment shared at the event: 

And join us (including our Staff, Board and Empowerment Lead survivors) to celebrate Cancer Survivors Day on Sunday, June 2.  

What’s REALLY the News You Can Use?

“New study shows baby otters prevent diseases!” “Chocolate promotes weight loss!” Don’t we wish headlines like that were true?  Unfortunately, some of the things we read about possible new cancer treatments are just about as likely.   

Because we seek hope from these good reports, it can be easy to misinterpret what we hear about studies and results. How do you know when reading about a study’s findings whether it’s a real breakthrough or just a sensational story? 

First, let’s go over the basics of research.  

Basics of Research

  • Scientific method is how scientists figure out if some treatment makes a difference by conducting an experiment.  
  • In cancer research, the experimental process of understanding if a particular treatment is effective and safe is called a clinical trial 
  • One study can seem to prove almost anything; it’s only through repeated, tightly monitored and designed clinical research that we can know that a treatment actually works.  An example: I ate chocolate AND I lost weight; that doesn’t mean the chocolate CAUSED the weight loss. 

Cancer Research Facts

  • There are strict regulations for designing and conducting trials and reporting results, monitored by the Food and Drug Administration (FDA). 
  • The journey from an idea to an approved treatment can take many, many years, thousands of scientists, hundreds of thousands of patients, and millions of dollars. Only a fraction of clinical trials result in an approved treatment that is available to the public.  
  • Cancer researchers start with experiments in the laboratory, often done on cells, tissues, or animals whose cells work like human cells. If the results are promising, the researcher (also known as a Principal Investigator or PI) will apply to the FDA to begin a clinical trial, sharing data and a detailed design for testing the treatment on humans.  
  • Once the application is approved, the trial begins and goes through a series of phases that are closely monitored not only by the FDA, but by the internal review board (IRB) of the institution where the trial is taking place. These phases determine if the treatment works, if it’s safe, and ultimately if it works better than what has been regarded as the “standard of care” for a specific cancer type. 
  • If the clinical trial meets the criteria stated in the initial design, it is presented to the FDA for approval. There is even more rigorous review of the research design and results, including peer review by other researchers, before the treatment is approved. 
  • Once approved for public use, the treatment is continuously scrutinized for long-term side effects and other adverse events that may indicate serious problems. Sometimes, a treatment approved for one cancer type seems promising for others, and it will go through another clinical trial. 

Here are some factors that add credibility to articles and news stories that report findings:  

  • It’s reported by a neutral (non-political or entertainment) source. Examples include the Associate Press, Nature magazine, and medical publications such as the New England Journal of Medicine of the Journal of the American Society of Clinical Oncology (ASCO). 
  • The phrase “versus standard of care” lets us know there was an experimental group that did receive the test drug and a control group that did not. 
  • Funding sources, when identified, are the National Institutes of Health, academic medical centers or research universities.  
  • The sample size is very important: the larger the study, the more significant the results and the farther along in the clinical research process it has proven valid. 
  • The entity making the report isn’t trying to see you something. 

The good news? There are AMAZING treatments currently in clinical trials that once would have seemed like science fiction. This June, our team will report “breaking news” about new cancer treatments from the ASCO annual meeting in Chicago. We are thrilled to share with you that one of OUR programs, Empowering Providers to Empower Patients (EPEP), is being published among ASCO’s online abstracts.  

Have a question about something you see online? Reach out to us at tracy@powerfulpatients.org and we will help you interpret how the information might apply to you. 

Your Cancer Journey is Yours 

I’ll never forget how I felt on October 1, 2010, when a phone call changed my life. After a routine annual “neck check” turned out to not be routine at all, I learned that I had thyroid cancer. That day, I became a member of a family of over 18 million cancer survivors in the United States. 

I overshare all the time. I figure if I’m going through something, I might as well let someone else learn from it. I started sharing my diagnosis with friends, who in turn told others. And wow, did those people rally around me! Offers to drive my kids (4th and 5th grade at the time), food, gifts; people were excited to be part of my journey and to meet milestones and revel in good news. I truly felt like a “trophy patient.” And I quickly met a “scar sister,” whose surgery preceded mine by three weeks, allowing her to be an unparalleled source of information and support.  

Fast forward 13½ years, I’m still here! While I still have active cancer cells (thanks to a recurrence with metastasis in 2012), I’ve been stable since 2013. I had a squamous cell carcinoma removed from my left eyebrow in 2019, so I’ve now got two very visible scars to show for my three diagnoses.  

How does my story tie to the title, “Your cancer journey is yours”? Because YOU don’t have to overshare, or even share. YOU don’t have to be, as a friend experiencing a recurrence put it, “everyone’s inspiring cancer patient.” YOU don’t have to do blog posts, appear in videos or be in support groups. YOU don’t have to wear a ribbon or dye your hair pink or teal or whatever your cancer color is. As my kids say, “YOU do you.” Many of us feel tremendous support from the community of people who’ve faced cancer, but it’s your choice whether and with whom to share your experience. 

The National Cancer Institute defines a survivor: “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer.” That’s the one thing I want you to take away from this post: YOU ARE A SURVIVOR. Whether you’re newly diagnosed or have been living with or beyond cancer for years, YOU are a survivor. Survivorship is on your terms, whether you shout it from the rooftops or keep it a secret.

If you’ve been less public with your cancer journey and would like to connect with others like you, here are some options for connection: 

  • PEN’s Empowerment Leads: these wonderful volunteers are the heart of our efforts to connect survivors with support. 
  • PEN’s partner organizations that offer survivor support 
  • For support related to your exact diagnosis, visit PEN’s web site, which shares resources by cancer type. 
  • Please feel free to reach out to me at tracy@powerfulpatients.org. It would be my honor to help you find your people.

I never thought anything would mean more to me than the support I got from fellow survivors. I was wrong. Being that survivor is the most meaningful experience, and it’s why I am honored to lead the Patient Empowerment Network.