A Chicago Grandmother’s Seven-Year Journey with Small-Cell Lung Cancer: A Fight for Time, Hope, and Progress

Mangiameli was diagnosed in 2018, just after she quit smoking—a habit she’d carried for years. The turning point came when one of her daughters shared news of a pregnancy and asked Mangiameli to stop smoking so she could be around the baby.

“I tried different things,” Mangiameli told SurvivorNet. “I finally cut way down when I could quit smoking in May 2018.”

WATCH: How Smokers vs. Non-Smokers Differ When It Comes to Lung Cancer and Its Treatment?

But shortly after quitting, Mangiameli developed a persistent cough. She chalked it up to allergies until a doctor urged her to get an X-ray.

“A day or two later, I got a call saying, ‘Go see your doctor because you have lung cancer.’”

After a battery of tests—MRI, CT scan, PET scan, and biopsy—Mangiameli received the diagnosis: small-cell lung cancer.

There are two main types of lung cancer, which doctors group together based on how they act and how they’re treated:

• Non-small cell lung cancer (NSCLC) is the most common type and makes up about 85% of cases
• Small-cell lung cancer (SCLC) is less common, but it tends to grow faster than NSCLC and is treated very differently

Mangiameli’s first reaction wasn’t panic, as she was more concerned about an upcoming trip she and her husband had invested lots of money in.

“My husband had an ocean cruise to Australia planned,” she said.

“I asked my doctor if we could wait two months to start treatment.”

But her doctor was insistent that she needed to begin treatment immediately, so the trip was canceled. Thankfully, they had insurance.

WATCH: Lung Cancer and Its Lack of Symptoms 

Mangiameli began four rounds of chemotherapy and radiation. At the time of her diagnosis, she says immunotherapy wasn’t yet available. Fortunately, within three months, her CT scan showed remission.

Lung cancer experts tell SurvivorNet that treatment varies depending on which type and stage of cancer you have. If the cancer is local — meaning just in the lungs — surgery may be an option. But if it has spread to the lymph nodes, a combination of radiation with chemotherapy, followed by immunotherapy, may be the best option.

Dr. Brendon Stiles, chief of thoracic surgery and surgical oncology at Montefiore Health System (previously a thoracic surgeon at Weill Cornell Medical Center), tells SurvivorNet that immunotherapy has shown great promise for patients.

He says using immunotherapy in both early and late-stage lung cancer has given patients more treatment options. “It’s amazing to me now that you can have Stage IV lung cancer and actually not even need chemotherapy. If you have high expression of a protein that we know is targeted by immunotherapy, you may just get immunotherapy alone,” Dr. Stiles said.

Dr. Stiles adds that immunotherapy for later-stage lung cancer has been the gold standard for some years since its Food and Drug Administration (FDA) approval.

WATCH: Immunotherapy Has Changed The Game For Lung Cancer

As for Mangiameli, she says after undergoing treatment, she has been in remission, though the cancer had spread to her liver, which was treated with radiation.

Mangiameli says that throughout her cancer journey, her family has been her biggest motivation. Her granddaughter was just one year old when she was diagnosed, and she’s now seven. Mangiameli ‘s goal is to live long enough to see her graduate from eighth grade.

“I wanted to be buddies with her,” Mangiameli says.

“When you have any cancer, sometimes you go to bed at night and don’t want to even think about it. You just have to keep moving forward and share hope with other people.”

The gracious 75-year-old knows she’s quite fortunate to be able to defy the odds.

Small-cell lung cancer (SCLC) is one of the most aggressive forms of lung cancer. Without treatment, the average survival time after diagnosis is just 2 to 4 months. Even with therapy, only about 10% of patients remain disease-free two years after starting treatment—a period when most relapses tend to occur. And while some patients do reach remission, the risk of dying from lung cancer remains high. Overall, the five-year survival rate for SCLC is estimated to be between 5% and 10%, according to the National Cancer Institute.

Mangiameli still undergoes quarterly CT scans and remains deeply engaged in the cancer research community.

“I’ve toured the small-cell cancer lab at Duke University, and I’ve been to ASCO. What’s happened in the last two years for small-cell lung cancer is kind of amazing,” Mangiameli said.

Although Mangiameli exemplifies hope amid a tough diagnosis, she also doesn’t shy away from the emotional toll cancer brings.

“I have survivor’s guilt because I’ve lived this long with this disease. I never said, ‘Why me?’ when I was diagnosed. I asked, ‘Why am I still here?’”

Her oncologist told her she’s one of the few long-term survivors of small-cell lung cancer. “So, because I have the luck to still be here, I need to share that with people,” she said.

She’s hopeful about the future of treatment, noting that new therapies are emerging for all stages of small-cell lung cancer. Still, she’s concerned about cuts to cancer research funding.

Despite the challenges, Mangiameli does her best to remain active not just for cancer advocacy but also for her pride and joy, her family.

Smoking and Cancer Risk

Mangiameli’s years as a smoker likely contributed to her lung cancer diagnosis.

Although nonsmokers can get lung cancer, cigarette smoking is the number one risk factor for the disease. Tobacco smoke contains a mixture of more than 7,000 different chemicals, at least 70 of which are known to cause cancer, the Centers for Disease Control and Prevention (CDC) says.

The CDC says cigarette smoking is linked to about 80 to 90 percent of lung cancer deaths, and people who smoke cigarettes are 15 to 30 times more likely to get lung cancer or die from lung cancer than people who don’t smoke. Additionally, secondhand smoke can cause lung cancer.

Smoking is, of course, the primary cause of lung cancer, but nonsmokers can and do develop this disease. Researchers have made progress in understanding the differences between lung cancer in smokers versus nonsmokers, says Dr. Ronald Natale, a medical oncologist at Cedars-Sinai Medical Center, and they’re developing targeted treatments that will be able to address the genetic drivers of lung cancer in nonsmokers.

“Among patients who are nonsmokers, or former very light smokers, we identify a mutation that we can target with pills in about 60% to 70% of them. That leaves 30% or so, 40%, in whom we either have a target for which we do not have a successful treatment,” Dr. Ronald Natale, a medical oncologist at Cedars-Sinai Medical Center, tells SurvivorNet.

“Among patients who are smokers, who have more complex cancers that have hundreds, sometimes thousands of mutations, don’t have a driver mutation that we can give a pill for, which is only a tiny percentage of lifelong smokers. Chemotherapy is the primary treatment in most patients,” Dr. Natale explains further.

WATCH: Does smoking marijuana pose health risks?

New research published in Cancer Journal for Clinicians suggests that although the number of cancer cases is expected to rise, eliminating tobacco use could significantly reduce their cancer risks.

According to researchers, the number of annual cancer diagnoses will jump from roughly 20 million today to 35 million by 2050. The figure puts added pressure on cancer awareness advocates and healthcare practitioners because some of these cancer cases are preventable, according to experts.

“[Eliminating] tobacco use alone could prevent 1 in 4 cancer deaths or approximately 2.6 million cancer deaths annually,” said Dr. Ahmedin Jemal, senior vice president of surveillance & health equity science at the American Cancer Society and senior author of the study.

Tobacco, more specifically smoking cigarettes, is a significant risk factor for lung cancer, which is “the most commonly diagnosed cancer and leading cause of cancer death overall and in men worldwide,” the American Cancer Society says.

Understanding Lung Cancer and Why It’s Hard to Catch Early

Lung cancer forms when cancer cells develop in the tissues of the lung. It is the second most common form of cancer and the leading cause of cancer deaths in both men and women in the U.S., SurvivorNet experts say. It’s “completely asymptomatic,” says thoracic surgeon-in-chief at Temple University Health System Dr. Joseph Friedberg.

“It causes no issues until it has spread somewhere. So, if it spreads to the bones, it may cause pain. If it spreads to the brain, it may cause something not subtle, like a seizure,” Dr. Friedberg adds.

WATCH: Detecting lung cancer in the absence of symptoms.

Scans such as X-rays can help doctors determine if a shadow appears, which can prompt further testing for lung cancer.

Lung cancer often doesn’t cause symptoms until it has already spread outside the lungs, according to SurvivorNet’s experts.

Some people with lung cancer may experience symptoms such as:

• A cough that doesn’t go away, that gets worse, or that brings up bloody phlegm
• Shortness of breath
• Fatigue
• Chest pain
• Hoarse voice
• Appetite loss
• Weight loss

If you are experiencing these kinds of symptoms consistently, contact your doctor for further tests.

How Molecular Testing Helps Lung Cancer Patients

Lung cancer treatment has seen notable progress, partly because of molecular testing and profiling. This type of testing helps better understand specific genetic alterations and mutations that drive the growth, development, and progression of cancer cells. Some of these molecular characteristics can be targeted using precise and effective new therapies to improve patient outcomes. Ultimately, understanding the molecular profile of each person’s cancer allows oncologists to use customized and personalized treatments.

RELATED Next-Generation Sequencing in Lung Cancer

There are several next-generation sequencing (NGS) tests you may encounter, depending on where you are getting treatment and what you are getting treatment for. Here are some of the common ones currently on the market:

• FoundationOne®CDx looks at 324 genes in solid tumors and says results can take up to 12 days. Test results include microsatellite instability (MSI) and tumor mutational burden (TMB) to help inform immunotherapy decisions.
• OmniSeq Insight provides comprehensive genomic and immune profiling for all solid tumors. It looks for 523 different genes. Test results include microsatellite instability (MSI) and tumor mutational burden (TMB), as well as PD-L1 by immunohistochemistry (IHC).
• Cobas EGFR Mutation Test v2 identifies 42 mutations in exons 18, 19, 20, and 21 of the epidermal growth factor receptor (EGFR) gene. It is designed to test tissue and plasma specimens with a single kit, allowing labs to run tissue and plasma simultaneously on the same plate.

Questions for Your Doctor

If you find yourself diagnosed with lung cancer and are concerned about the long-term impacts, here are some questions you can ask your doctor.

• Has my cancer spread to other parts of the body?
• Based on my cancer stage, what are my treatment options?
• What are the side effects of my recommended treatment?
• Are there ways to help minimize the effects of treatment?
• How long will I be unable to work or carry out my daily activities?
• What financial resources are available to get the treatments I need?

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