“Always trust your gut. Don’t leave your treatment in the hands of someone that you don’t
trust or that does not seem like a team player. Yes, they are all smart—even brilliant—but read, read, read, and question them at every corner and challenge the standard of care. Exercise, healthy eating, learning the ropes of insurance, mediation/prayer are all additive. Your life depends on your own advocacy. Let others lead when you can’t, but always remember you should be heard.” ~Dana Deighton**
I have had the great fortune of meeting an incredible woman who doesn’t take “No” for an answer. Dana Deighton is an active, athletic, energetic 48-year-old mother of three, formerly working in marketing at National Geographic, now working at Inspire. She also lives with Stage 4 esophageal adenocarcinoma, a rare cancer that primarily affects older white men (60 +) with a history of smoking and/or heavy alcohol consumption, acid reflux and being overweight. Dana had none of these risk factors.
She has been interviewed by The Washington Post and has written about her experience in a blog (for the Target Cancer Foundation) titled, “Always Remember You Should Be Heard: A Journey From Caregiver, To Patient, To Advocate.” Her journey with cancer actually began in 2001 with her mother’s late diagnosis with colon cancer.
“My mom was diagnosed with Stage IV colon cancer at age 61. She was a nurse herself, but never admitted to any symptoms until she could no longer avoid the questions regarding her weight loss and abdominal distension. Unfortunately, that left my mom with only six weeks to live after an unsuccessful bowel resection,” she wrote.
Her mother didn’t question her physicians and didn’t seek second opinions, even though she was a nurse. She died of sepsis after a botched surgery.
The experience changed Dana’s understanding of the medical world and taught her a valuable lesson: you have to be your own advocate or have an advocate with you in the healthcare setting and in any patient journey.
Personal Advocacy
Mid-2012, Dana faced a health crisis. Starting with a strange rash, aching joints and fatigue, she seemed to have lupus. Months went by with other strange symptoms, including stomach discomfort, severe stomachache and spreading back pain. But when she found a painless lump on her neck in February 2013, she knew there was something else wrong.
A needle biopsy of the lump came back as “aggressive cancer” but where was the primary tumor? Dana went to several oncologists to find out. The neck lump was finally removed and in April, pathologists at Johns Hopkins Medical Center diagnosed Stage IV esophageal cancer. The oncologist that gave her the news told her to enjoy the time she had with her children. About this visit, Dana wrote, “When you are 43 (now with three young kids) and told to get your affairs in order and to enjoy the next 10 months with your kids, it rather quickly commits you to either submission or defiance.”
Instead of accepting oncologists’ suggestions to begin palliative care, Dana searched for experts. Her journey meant making experts see her, a woman who did not match the “normal” esophageal cancer patient, and treat her accordingly. Dana wrote,
“The data suggests that because so few patients survive, that quality of life often trumps extended aggressive treatments. While his data may have been right, it was only right for the majority of the patients that were in the middle of the bell curve. They were usually men over 60 who indulged more and exercised less than me. Since I was an active 43-year-old, who never took a drag of anything, and only enjoyed an occasional drink, I was relentless in my appeal to not be grouped with “them”, though it mainly fell on deaf ears.”
It also required her to wrestle with insurance to cover treatments that were not “traditional.” She has utilized surgery, radiation, chemotherapy and now immunotherapy, and is still going strong.
“Every time I was told “no” because of my staging, we found a way to make it a “yes” and eventually got the extra chemo, radiation, surgery, and the immunotherapy before it was approved for EC. All of these modalities, plus an army of family, friends, and medical professionals, have played a role in my ultimate survival,” Dana wrote.
Advocacy in Healthcare
Needing to be your own advocate is a tragic reality of our healthcare system today. Even though you are sick and may be weak, you still have to advocate for yourself (or have someone who will advocate for you) so that you will get the best possible care. (See our post “Why I Became a Patient Engagement Advocate” and Pat Mastors’ story)
Yet, having an advocate can be challenging for many. According to Pew Research Center in 2017, 42% of adults in the US were living without a spouse or partner. In a recent article for The Washington Post, Steven Petrow asked, “When you’re aging alone, who will take care of you if you get sick?” His article shared his experience of trying to schedule a colonoscopy without having someone to pick him up after the procedure. The article is a summary of strategies he and others have used to get help and includes the recommendation of a book entitled, Share the Care ,which explains how to create a group of people to help you, if you are a patient or a caregiver.
In the post, Eliminate Your Doubts About Getting a Second Opinion, we share the importance of getting a second opinion. Specifically we share a study from 2015, published in the American Journal of Medicine, finding that in almost 15% of cases, second opinions changed the patient’s diagnosis. In addition, second opinions modified almost 37% of the first recommended treatments and in almost 11% of the cases, second opinions altered both the diagnosis and the treatment.
Your life depends on your own advocacy. For example, another story illustrating the value of advocacy and research, see “If Not For Immunotherapy…” and “In the News: Tumor Infiltrating Lymphocytes and Breast Cancer.” Being an advocate for yourself or a loved one and getting a second opinion can save your life.
**Dana is working to increase research in gastrointestinal-esophageal cancer. She is working with Corrie Painter (we introduced her patient story here) and the Broad Institute to start another patient-researcher collaboration. Like the MBCProject.org (metastatic breast cancer) and the ASCproject.org (angiosarcoma), the GECproject.org (gastrointestinal-esophageal cancer) will ask patients across the country to provide saliva samples and other information to find out the genetic drivers of gastrointestinal-esophageal cancers. We will keep you up-to-date on this new initiative.
Here is Dana sharing her story at the Deadliest Cancers Coalition Briefing in March 2017.
Thank you for this information on one of the most important issues in Healthcare–patient advocacy. I have Advanced Stage Metastatic Breast Cancer and I am constantly reading, talking to other cancer patients and conferring with health professionals to make my discussions with my doctor more meaningful and maybe even be a catalyst for a cure.