In this episode we will focus cancer and communications.  Long gone are the days when we whispered the word, "cancer."  But even as people with cancer are more vocal in talking about the challenges they face, the stigmas are still there.  "Cancerspeak" is a foreign language and patients and caregivers can be at a real disadvantage in understanding the complexity of cancer care and lexicon that healthcare providers may use.  Patients and their caregivers may want to say, "it's Greek to me," throw up their hands.  How do we empower them to ask the questions that are important to them, require oncologists to not default to "doc speak," and make sure the patient's voice and priorities are the focus. 

For this episode I am joined by my friend and colleague, Jackie Nedell.  Jackie is a communications executive who brings expertise to clients in her media training, messaging and strategy, from her roles in television newsrooms, public relations agencies and as a senior communications role in the Clinton Administration. Her roles in tv newsrooms, in front of the camera as a reporter and anchor , give her clients real world experience through her hands-on media and presentation training. 

Jackie has traversed the bumpy cancer road more than once.  She brings honesty, humor, intelligence, and a no-nonsense approach to talking about her cancer.d

In this episode we will focus on rare cancers.  These are the step children of cancer.  They get fewer dollars for research, patients may have more limited treatment options and the challenges for advocates to raise awareness and build support can be daunting.  Let’s talk about the unique experience of people with rare cancers. 

For this episode I am joined by Jim Palma and John Hopper.  Jim and John are colleagues and friends, and are both leaders in the rare cancer community, leading research and advocacy efforts, bringing focus and improved outcomes for this underserved group patients.  Jim Palma is the Executive Director of the Target Cancer Foundation.  Jim joined TargetCancer in 2010, Jim has overseen its growth from a small start-up to a nationally recognized foundation supporting comprehensive rare cancer research programs and patient support services. Jim is a member of the Board of Directors of the National Organization for Rare Disorders (NORD), and is a founding Co-Chair of the NORD Rare Cancers Coalition. 

In addition, Jim is a Steering Committee member at the GI Cancers Alliance and the Global Cholangiocarcinoma Alliance. 

CancerRebranded Episode #3 – BEING QUEER AND HAVING CANCER

Hello and welcome to Cancer Rebranded.  I’m Craig Lustig.  In this episode we will focus on the intersection of being LGBTQ and having cancer.  How have the issues and challenges that I faced in 1992 as a late-twenty-something gay man with cancer changed and what are the current challenges?

For this episode I am joined by someone who brings a wealth of professional and personal experience and expertise to this topic, Scout.  Scout is the Executive Director of the National LGBT Cancer Network.  Scout serves as the principal investigator of both the CDC-funded LGBTQ tobacco-related cancer disparity network and Out: The National Cancer Survey.  Scout spends much of his time working with various agencies to expand their reach and engagement with LGBTQ+ populations. Scout works in  health policy analysis and has a particular interest in expanding research in the LGBTQ+ community.  He has faculty appointments at both Brown University and Boston Universities’ Schools of Public Health.  Scout is an openly nonbinary and trans father of three.

Hello and welcome to Cancer Rebranded.  I’m Craig Lustig.  This is part 2 of my two-part conversation with Dr. Jonathan Finlay.  When I was diagnosed with a very rare brain cancer in 1992, Dr. Finlay was leading the only US clinical trial for this tumor type.  

 Jonathan and I had a lengthy, in-depth conversation covering what has changed over 30 years in the treatment of children with brain tumors, how he got into this field and his personal cancer story.

 Let’s get to our conversation with Jonathan.  Just a note, this is an audio-only episode.

 Thank you, thank you, for sharing your time, for listening.  Simply by your participation, you are a cancer advocate.

Hello and welcome to Cancer Rebranded.  I’m Craig Lustig.  In this two-part episode I speak with Dr. Jonathan Finlay.  When I was diagnosed with a very rare brain cancer in 1992, Dr. Finlay was leading the only US clinical trial for this tumor type.  The goal of the clinical trial wasn’t to test a new drug, but rather to use chemotherapy in place of radiation.  Radiation to the brain can have a significant impact on various brain functions and Dr. Finlay sought cure patients and also give them an improved quality of life.

 Jonathan and I had a lengthy, in-depth conversation covering what has changed over 30 years in the treatment of children with brain tumors, how he got into this field and his personal cancer story.

 Let’s get to our conversation with Jonathan.  Just a note, this is an audio-only episode.

 Thank you, thank you, for sharing your time, for listening.  Simply by your participation, you are a cancer advocate.

Hello and welcome to Cancer Rebranded.  In 1992, I was diagnosed with brain cancer, a type of brain tumor usually seen in adolescents and young adults.  My name is Craig Lustig and more than 30 years after hearing the words, “you have cancer,” I’m having conversations about what has changed in the cancer experience, what hasn’t and the work ahead.  

When I meet newly diagnosed cancer patients, I encourage them, that regardless of their prognosis, remember that just because you have cancer, doesn’t mean that you are cancer.  You have a family, friends, a community, a profession, hobbies and dreams.  The impact of cancer is significant, but just because you have cancer, all of the elements that make you unique are still there.

This podcast aims to do a few things.  First, take a big picture view of the cancer experience.  Let’s talk about treatment decisions, side effects and clinical trials.  But I also want to focus on questions like, what does it mean to be a young adult, a person of color, a queer person with cancer, an older person, a caregiver.  In the US there are more than 18 million cancer survivors and growing.  What does it mean to integrate the cancer experience into your life 1, 5, 10, 20 or 30 years after your diagnosis?  These topics are complicated, because every person impacted by cancer is a unique and complex individual.

I want to engage you in the conversation.  I’ve invited people I’ve met along the way in my life and cancer journey to discuss all sorts of things, and I welcome your ideas and input.