My lung cancer diagnosis: What I wish I'd known - Dee Hunt
November 9, 2014 | by Nicole White
Dee Hunt never smoked.
Neither did her five sisters and brothers. They didn't have exposure to radon or asbestos, either. That didn’t prevent every one of them from being diagnosed with lung cancer.
Their parents were smokers, but they'd all left home more than 30 years before any of them were diagnosed. For most of her life, secondhand smoke was not ever raised as a health risk or concern.
“I thought it was only smoking-related,” Hunt said in a recent interview of her early impressions of lung cancer. Now she knows better. “It’s in our environment. It’s what we breathe. It’s in our genes.”
Hunt’s older sister died of lung cancer only six months after being diagnosed with the disease. That diagnosis was preceded by three years of being misdiagnosed with pneumonia.
That ordeal prompted Hunt, now 58, to take her health into her own hands. She began pushing for a screening of her lungs to identify any cancer. She ultimately got the screening and, when she did, doctors discovered a small tumor. Her other siblings followed suit, with all of them ultimately diagnosed with tumors of various sizes.
Hunt was treated, having a lobe of the affected lung removed. At that point, she said, she was told she was cancer free. But, in a few months, troublesome symptoms -- a cough, a pain in her back -- resurfaced. She returned to the facility treating her and was diagnosed with a lung infection and assured her cancer did not return. After months of antibiotics, her symptoms worsened. She was diagnosed with cancer -- this time in the opposite lung, and the doctors wanted to remove the entire lung. She was 53.
That's when she went to City of Hope for a second opinion.
She saw Dan Raz, M.D., co-director of the Lung Cancer and Thoracic Oncology Program at City of Hope. He assured her that she did not, at that time, need to have her lung removed. He ordered a CT scan, and she began a new treatment plan at City of Hope. She continued her care with Karen Reckamp, M.D., M.S., co-director of the Lung Cancer and Thoracic Oncology Program. Cancer and oral medications addressed her lung cancer, and now she returns to City of Hope every four weeks for "maintenance" chemotherapy.
Now Hunt is a virtual almanac of lung cancer statistics. In the five years since her diagnosis, she’s armed herself with every fact she could glean from her doctors, research papers, the Internet, and conferences. An estimated 160,000 will die of the disease this year. Of those, 28,000 are nonsmokers or quit smoking years before their diagnosis.
Hunt's mission – on top of conquering her own cancer – is three-pronged.
“End the stigma. Increase the funding. Get screening,” she said. “I want there to be screening for every person, just like a mammogram.”
Although she applauds newly available low-dose CT scan screening for heavy smokers – which remains controversial, with Medicare debating whether it will cover the testing – she’s disappointed the screening is aimed only at smokers. No one in her family would have fit the guidelines, she points out. That means the onus is on people with strong family histories of lung cancer to know any early signs and to fight for diagnosis and treatment.
“If your cancer is in early stages, you have a 75 to 80 percent chance of beating this,” Hunt said. “When you get that cough or that pain in your back, or you have a hard time breathing, it’s too late. You’re Stage 3 or 4. I thought I had something else. I ignored those symptoms. That’s why I think screening has to be absolute if you came from a family that smoked, if you have a family history, if you seem to have symptoms.”
Hunt now has some advice for people diagnosed with lung cancer, or any cancer.
Get a second opinion. Hunt was first diagnosed with a lung infection, so she had lung surgery. But surgery alone did not address her illness. When her cancer returned and was misdiagnosed, she was frustrated, to say the very least. To go from being told it was an infection to her doctor advising her to remove an entire lung finally pushed her to a getting a second opinion. “I was so afraid to hurt a doctor’s feelings, I didn’t put my foot down.”
Go to a comprehensive cancer center. “Just because a place has a building with a name on it doesn’t mean they necessarily see many lung cancer patients,” Hunt said. “They may screen as many people in a year as City of Hope does in a month.” Expertise does make a difference. “If you have cancer, go to someone who does nothing but cancer,” she said. “It’s all they see, it’s all they know.”
Advocate for yourself. The doctor may be the medical expert, but you are the expert when it comes to your own body and your own life. Come prepared. Be candid with all concerns. Ask questions. If you don’t trust the answers, or have any doubts, don’t hesitate to consult other experts.
Get screened. Screening is the best hope for catching lung cancer early, Hunt says. She believes screening should be open to everyone – not just current and former heavy smokers, which is what the U.S. Preventive Services Task Force currently recommends. She never smoked, and still developed lung cancer. She says she also could have benefited from an earlier diagnosis.
Know the signs and don’t ignore them. Hunt had a cough, pains in her back and difficulty breathing – but she thought the symptoms were caused by something else. According to the American Cancer Society, common lung cancer symptoms include:
- a cough that does not go away or gets worse
- chest pain that is often worse with deep breathing, coughing or laughing
- persistent hoarseness
- unexplained weight loss and loss of appetite
- coughing up blood
- unexplained shortness of breath;
- unexplained fatigue and weakness;
- bronchitis or pneumonia that doesn’t go away or recurs
- onset of wheezing
Although many other conditions can cause these symptoms, if you have them, consult your doctor and have them checked out. Doing so could save your life.
Learn more about becoming a patient or getting a second opinion at City of Hope by visiting our website or by calling 800-826-HOPE (4673). City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.