The Importance of Advocating for Yourself
- A 37-year-old mother is speaking out, highlighting the importance of being your own health advocate, after her lung cancer was misdiagnosed three times. Her diagnosis came as a shock as she has never smoked cigarettes.
- Smoking may be the first cause that comes to mind with lung cancer, but almost 20% of people who die from lung cancer in the United States each year have never smoked or used any other form of tobacco.
- Being your own advocate is always important when it comes to cancer care. And by doing so, you can make sure that your doctor sees you as an individual.
“I used my voice and requested further investigation; the biopsy of my presumed cyst showed double lung cancer,” Jules Fielder tells The Sun. “It (the cancer) has now spread to my spine and pelvis. I am frustrated about the misdiagnosis.”Read More
“It’s sad that I had to fight for a face-to-face appointment and insist on further testing when the lump in my neck was being examined.”
Her story is not an uncommon one; due to the large number of Covid-19 patients admitted to hospitals during the beginning of the pandemic, many people, including cancer patients, were turned away. In fact, cancer screenings dropped in the United States by a whopping 95%.
A Mother’s Cancer Diagnosis
Fielder was experiencing what she describes as a “dull ache” in her shoulder, but she was unable to see her doctor in person due to Covid restrictions. She was told she was suffering from tennis elbow and given exercises over the phone.
However, in October, she noticed her body started to make a “crackle” noise whenever she exhaled; according to Fielder, she was told there was “nothing sinister” going on, again dismissing her concerns.
It was her next symptom that popped up later in the month that caused Fielder to insist on further testing — she spotted a “pea size” lump in her neck; she was told it was likely a cyst or a raised lymph node. But that answer did not satisfy Fielder.
And thankfully she asked for further testing, because in November, it was revealed through biopsy results that she has incurable lung cancer. Despite her symptoms and this heartbreaking news, she says she is in good health.
“The crackle noise happens only when I exhale but other than that, I have been absolutely fine,” she says.
Lung Cancer in Non-Smokers
Fielder is using her lung cancer diagnosis to spread awareness that you do not have to have a history of smoking in order to get this cancer.
“I feel fit enough to run half a marathon,” Fielder says. “People assume lung cancer only happens to smokers over 50, but it doesn’t discriminate. I don’t smoke and I have no other symptoms. Lung cancer has many signs and it isn’t just coughing up blood.”
“I don’t have breathing difficulties or any pain,” she adds. “I can’t stress enough how important it is to get checked. We need to check our bodies, anything abnormal or something that wasn’t there before.”
“Don’t listen to your neighbor, go and see a doctor!”
Lung cancer is the second most common form of cancer, and the leading cause of cancer deaths in both men and women in the U.S. It can be particularly tricky to treat because often, symptoms do not show up until the cancer has spread to other organs.
Smoking may be the first cause that comes to mind with lung cancer. And it is true that smoking causes most cases of this cancer. In fact, tobacco smoke contains a mixture of more than 7,000 different chemicals, at least 70 of which are known to cause cancer. (If you quit smoking, you can significantly reduce your risk of developing the disease and dying from it.)
“If you’re smoking, don’t smoke,” Dr. Joseph Friedberg, head of thoracic surgery at the University of Maryland School of Medicine, tells SurvivorNet. “You never return down all the way to the (level of) the person who never smoked as far as your risk of lung cancer goes, but it goes down with time.”
However, almost 20% of people who die from lung cancer in the U.S. each year have never smoked or used any other form of tobacco. Here at SurvivorNet, we say that anyone with lungs can get lung cancer, regardless of if you have smoked or not.
The Importance of Advocating for Yourself
Being your own advocate is always important when it comes to cancer care. And by doing so, you can make sure that your doctor sees you as an individual; this is exactly what Fielder did, which led to her lung cancer diagnosis.
“I am now an advocate for myself, I use my social media to encourage others to get checked,” she says.
“I want to be a role model to my son, Toby, 12, so I am being positive,” she adds. “Unfortunately, I know how I am going to die, but I want to make sure Toby can look at me for strength.”
Alex Echols, a patient advocate and lymphoma survivor, tells SurvivorNet, “One of the biggest things that I did from the very beginning was asking the right questions. It’s our lives on the line.”
He credits these questions with making sure that doctors took him seriously and viewed him as a partner in his treatment.
Contributing: SurvivorNet staff