She was part of a two percent, a three percent,and a 15 percent.
Emily Alfano spent her high school years raising money to fight cancer, but little did she know, inside her a cancerous tumor was growing.
Two years ago, she was a senior in high school and co-chairing Catwalk for Cancer, a student-run fashion show to raise money for the Jimmy Fund. The fundraiser was started to raise money to help Boston’s Dana-Farber Cancer Institute for research and improve chances of cancer survival.
Alfano volunteered with Catwalk for Cancerfor a few years. “I got involved because I knew a lot of people who were affected by cancer and I wanted to do something myself to make a difference.” According to Alfano, her grandfather died from cancer and her aunt had breast cancer.
At age 19, on April 24, Alfano heard the words “lung cancer,” a few months into her freshman year at East Carolina University. “I would never have imagined that I could be on the other side of this,” Alfano said, “You just don’t think things could happen to you. I raised money for other people but never thought it could be to help me.”
Fall of 2012, Alfano left her home in Methuen, Mass. for East Carolina University in North Carolina for a hospitality degree. She said she wanted to go to a school with new people and to travel to a new place. Her first semester, in hopes of learning the ways of the south, she joined a sorority, Zeta Tau Alpha, whose philanthropy is breast cancer education and awareness. “I was nervous the first month about meeting new people and I was homesick but definitely enjoying it,” Alfano said.
Alfano said she was 19, had never smoked, and was 13 hours and over 700 miles from home and family when a doctor told her she had lung cancer. She said, “I just kept thinking, ‘Oh my god, why me? What did I do to deserve this?’”
Alfano found out her right lung had collapsed through an x-ray, caused by a cancerous tumor.
After a computerized tomography scan (CT scan), her pulmonary doctor said the carcinoid tumor had been growing slowly for two or three years, like most lung carcinoid tumors. Only three out of ten tumors in the lungs are carcinoid tumors, and there are two different types. Typical carcinoid tumors are nine out of ten lung carcinoids, however atypical carcinoid tumors can spread cancer to other organs. It was unclear which type Alfano had, she said.
Dr. James Nickerson, an oncologist at Norris Cotton Cancer Center Keene at Cheshire Medical Center, said, “Carcinoid cancer in the lungs is rare. When you hear about lung cancer, it’s not usually that type.”
Both types of carcinoid tumors only account for one to two percent of all lung cancers. Alfano was part of that two percent.
Back in September 2012, about a month into her freshman year, Alfano had a bad cough. A month later, she found out she had pneumonia. “I felt really alone and small. I was far away from home and I was really sick and I didn’t have anyone to really help me,” she said, “It was really hard because I wasn’t super close with anyone down there yet.”
Virginia Alfano, Emily’s mom, said she did not find it strange her daughter had pneumonia, even though she had never had any major health issues. “We [my husband and I] were with Emily in the rain and she had a sundress on, so we figured that’s why she got it,” Virginia Alfano said, “But it lasted so long.”
Four months later, she was feeling fine again. “I was as good as new…until April,” Alfano said.
In April, doctors told her the pneumonia came back. During an x-ray, they saw the right upper lobe of her lung collapsed. Alfano said she did not realize it was anything more than pneumonia. “I couldn’t take deep breaths, but that was the only difference I noticed,” she said. By the time the tumor was found, her lung had been collapsed for a few weeks.
A tumor in the right upper bronchus of her lung, which was blocking the airway, caused her lung to collapse, according to Alfano. After this came a lung biopsy, where a small sample was removed, examined under a microscope and determined whether it was cancerous. Alfano’s mother flew down to accompany her to the bronchoscopy, where they inserted a bronchoscope through her mouth to collect pieces of lung tissue. Results came back a few days later—cancerous.
“I was sitting in my dorm room alone doing homework when the doctor called,” Alfano said. She immediately called her mom, then texted all her close sorority friends to come over.
Virginia Alfano said her daughter called her while she was at work to tell her the news. “I fell apart,” the mother said, “But I was being strong for her, she was crying and I didn’t cry while she was on the phone.”
Alfano said, “I definitely wish I had my family there to give them hugs.” She said she is grateful that by this time, she had a group of supportive school friends.
Like Alfano’s case, patients usually only find a carcinoid tumor when undergoing testing for another illness— in Alfano’s case, pneumonia. This is because 25 percent or more of people with carcinoid tumors do not have symptoms, according to Cleveland Clinic, a non-profit multispecialty academic medical center. Carcinoid tumors are made up of neuroendocrine cells, which are found throughout the body. They produce hormone-like substances such as adrenaline. Sometimes these neuroendocrine cells grow too quickly and form a tumor mass known as a carcinoid tumor.
Lindsey Mercer, one of Alfano’s longtime friends, said she was shocked when she found out the tumor was cancerous. “I was angry,” Mercer said, “She never smoked and she was perfectly healthy and young. Too young.”
The average age for lung cancer is 71 and only three percent of people with lung cancer are under 45-years-old, according to MedicineNet.com, a healthcare media publishing company. Alfano is part of that three percent.
The cause of carcinoid cancer is still unclear and there is no known relationship between the tumor and smoking, air pollutants or other chemicals. Nickerson said the cause in most cancer cases with young people is lifestyle or hereditary issues. Alfano’s could not be traced back to either.
Last spring, her freshman year was winding down and she missed going out with her friends and to class.
She still had pneumonia, a collapsed lung and a cancer diagnosis. “All my teachers were really understanding, except for one,” Alfano said, “My English teacher still failed me for attendance even with my doctor notes. I should have had an A, but it went to a B. So it wasn’t too bad, but it still wasn’t fair.” Alfano said that her social life changed, as well as her mindset. “Everyday when I woke up, I thought, ‘This is going to be the day that I die,’” Alfano said.
“At first I definitely didn’t want people to know.” Alfano said, “I felt like my body was gross, I hated everything about it.” She said knowing she had a cancerous tumor inside her made her feel even more self-conscious. However, she said support from friends and family helped her through it. Alfano said, “I got so much love pouring in from friends between phone calls, social media, text messages from people telling me that they were always there for me.”
Alfano said this made her realize she had to cherish and make the best of everyday.
“I was literally living like I was dying everyday because it could be my last. It could be the last day to have fun and enjoy myself,” she said.
Nickerson said it is common for a young patient diagnosed with cancer to change. “It changes their outlook, they appreciate day-to-day living a lot more,” he said.
It was May 2013 and Virginia Alfano picked Emily up from school for the long drive back to Massachusetts.
Virginia Alfano said she had a hard time knowing her daughter was sick, especially because she is the youngest of four children. “When I picked her up it looked like she was going to collapse on me any second,” Virginia Alfano said, “I could tell she was completely drained.”
Friend Mercer said she saw that Alfano was in denial for a while when she was home.
Mercer said, “Internally, she was scared, but she didn’t really show it.” Mercer added, “She broke down to me one day. She cried and told me it wasn’t fair, I knew she was still in shock.”
On June 10, Alfano had surgery at Massachusetts General Hospital to remove the tumor and the right upper lobe of her lung. “I knew I was in the best hands but it was probably the scariest ride into Boston.” Alfano said,“You never know what can happen in surgery. It was really horrifying.”
For her situation, the less-invasive surgery using robots was not an option. Carcinoid cancer in the lungs can be treated with surgery alone unless it is atypical and has spread. Doctors were still unaware which type Alfano had. It is usually done by sleeve restriction surgery, removing sections of the airway above and below the tumor, then reconnecting the airway, or Lobectomy, the removal of a portion of the lung called the lobe.
Alfano had both procedures. Her ribs were cut open to get the tumor, along with the whole upper lobe of the lung and then the airway was pieced back together.
Now, it is attached from the top of the right bronchial airway to the middle lobe of her lung. Luckily, the middle and lower parts of her lung were saved.
She said, “I’m grateful I live so close to the best hospital in the country.”
Virginia Alfano said surgery went very well and her daughter only had problems with nausea from pain medications.
She said Emily cried when she was alone in the hospital room, but almost constantly had company from friends. “She had someone with her twenty-four seven [hours, days a week],” Virginia Alfano said, noting this helped her recovery because she was surrounded by positive energy.
Although grateful the surgery went well, Emily was not happy with its aftermath. “Recovery was awful,” she said, “Probably the worst two months of my life.”
She said friends picked her up to do little things, like get food or go to the movies, but she couldn’t do anything on her own.
“I felt trapped,” Alfano said. “There was no one home all day and I was on narcotics so I couldn’t drive. I just felt trapped and hopeless.” Alfano said her family and friends were a huge help in her recovery.
Alfano said she is still self-conscious of her scar that touches across her right shoulder blade, along her side and under her right breast.
She said if a shirt shows the scar on her back, she’ll hold it to cover the scar or use her long, blonde hair.
She said the scar is going to take about a year to fade. Alfano said her rib is still cracked and she loses breath easily, but is slowly getting her stamina back. She can finally workout again, but cannot run or do contact sports.
Alfano said she knows this whole experience changed her to be a stronger person. “I’ve been through this, I know I can get through anything now,” Alfano said, “You need your lungs to breathe, that’s the simplest thing of living and if I can conquer this, I can make anything happen for myself.”
She’s also learned some life lessons. “I don’t worry as much about the little things, like the petty things anymore,” Alfano said, “I look at the big picture now.”
Mrs. Alfano said this life lesson has rubbed off on her too. “One day Emily looked at me and said, ‘You know what mom? You need to relax.’”
Virginia Alfano said she took this advice. “Now things don’t upset me like they used to, what we went through, that’s what matters,” she said.
Emily still resents smokers. “I see someone walking down the street smoking and I think, ‘Why does this happen to me when they’re perfectly okay?’ They’re so ignorant,” Alfano said.
She has never smoked and is part of the ten to 15 percent of lung cancer found in non-smokers. She said, “I’d like to say to all the smokers out there, that not being able to breathe is not fun.” Alfano said she fears getting sick again.
She said, “In the back of my head every day I think, ‘when will I get sick again, when is it going to happen?’” She goes to Mass. General Hospital once a year in May for testing.
Virginia Alfano said the day that Emily got back from the hospital, June 15, Emily’s surgeon called her.
She was leaving Rite Aid when she got the call. He told her it was a typical carcinoid tumor and Emily was completely cancer-free. She cried all the whole way home.
This November at ECU, she celebrated her fifth month of being cancer-free, during National Lung Cancer Awareness Month.
Virginia Alfano said, “It’s always hard for me to leave her, but was easier this time. She deserves a good sophomore year after all she’s been through.”
Taylor Thomas can be contacted at firstname.lastname@example.org