Understanding Late-Stage Lung Cancer Treatment Options
- U.S. navy veteran Kenny Jary, best known on TikTok as “Patriotic Kenny,” has been diagnosed with advanced lung cancer and is choosing to battle the disease at home. He took to social media to tell his fans, expressing tremendous gratitude. A GoFundMe has since been set up for him and raised more than $237,000.
- When lung cancer is diagnosed at stage four, that means it has spread to distant areas of the body (metastasis). Your medical team will need to determine the type of disease (small cell or non-small cell) in order to recommend the best course of treatment.
- Patients should get genetic testing to see if they have certain genetic biomarkers, sometimes called ‘driver mutations,’ that could benefit from targeted therapies.
- In addition to targeted therapy or immunotherapy, patients may be treated with radiation, chemotherapy, surgery, or some combination of treatment approaches.
The Minnesota resident, who began his video announcement by giving a warm welcome to his fans, said, “I’m home from the hospital and I feel a lot better, not bad at all, home with the crew … But you know something, fans? I love you all and I never will stop. Never stop.
Read More@patriotickenny The video we never wanted to make. ♬ Quiet Reflection – Unicorn From
Kenny, who maintained a smile despite being visibly emotional, with his eyes glistening with tears, continued in his TikTok post, “And I want to thank every single bit of you, one of you, across the United States, across the whole world. I just [don’t have] enough words for you for what you did for me.
“So, thank you again, but it really feels good to be home right now. So, thank you. You know, I’m not done with you yet, because I plan on making some more videos.”
According to Fox 9, Kenny’s cancer news comes as he’s on the mend from a bout with pneumonia. An earlier post on Kenny’s social media pages explains how he uses a scooter due to a chronic lung condition he’s living with, which prevents him from being able to walk long distances.
Shortly after the video sharing Kenny’s cancer news was posted, a GoFundMe was set up by his loved ones, and has since raised more than $237,000.
The GoFundMe reads, “If you have ever seen Patriotic Kenny, you know he radiates joy and patriotism. At 84 years old, Kenny is a Navy veteran who has built a community of millions on social media and in person simply by being kind, grateful, and unapologetically positive.
“Whether he is rolling through town on his red scooter covered in American flags or making strangers laugh online, his mission has always been the same: make people smile, help others, and leave the world better than he found it.”
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“A few years ago, when his mobility scooter broke down, supporters helped him replace it. With extra funds, Kenny chose to pay it forward by helping other veterans regain their independence. That decision later became the nonprofit, the Patriotic Kenny Foundation, which provides mobility scooters to veterans who would otherwise be isolated at home,” the GoFundMe page further explains.
“Now Kenny needs help. He has been diagnosed with stage IV metastatic lung cancer that has spread to his lymph nodes and lightly on his spine. His oxygen levels fluctuate, his strength is limited, and he now requires significant daily support.”
Kenny has chosen to remain home surrounded by his loved ones and receive care at home, which is expensive, as he’ll need caregivers at home and modifications made to his house.
Expert Resources for Lung Cancer Patients
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- Facing Stage 4 Lung Cancer as a Mother: My Daughters Are My Strength
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“If Kenny has ever made you smile or reminded you of the goodness still in the world, this is a chance to give something back. Any contribution, big or small, will help ensure that his time ahead is filled with care, comfort, dignity, and love,” the page continues.
“In keeping with Kenny’s spirit of generosity, any remaining funds after his care will go toward continuing his mission through the Patriotic Kenny Foundation.”
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When Kenny was told by his loved ones that the GoFundMe raised $3,000 in just the first five minutes, he broke down in tears expressing how grateful he was that the money was being raised.
Footage, showing the sweet moment was also shared on his social media pages, with the caption, “Humble and grateful and overwhelmed with love.”
Fans were quick to comment with praise, with one calling him a “national treasure.”
Another fan commented, “We all love you so very much Kenny! You are a inspiration to people everywhere. I hope you know that you’ve made such a difference in many people’s lives.”
“I hope Kenny understands how much he’s truly loved and always will be. He’s given so much to all of us,” a third fan wrote.
“Kenny is the best part of social media. I’m so thankful you guys have shared his life with us. I wish I could sit with Kenny in person and just love on him.”
Kenny likened the moment he learned about the recent donations, to when he found out a GoFundMe raised enough money for him to get a new scooter back in 2021.
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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.
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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.
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.
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.
Diagnosing Stage Four Lung Cancer
Doctors may utilize a variety of scans to diagnose, stage, and evaluate metastasis in lung cancer. The most common scans include:
- Magnetic Resonance Image (MRI) with contrast is a type of scan commonly used to evaluate if the disease has spread to other parts of the body. It uses magnetic waves to create images. Typically, an MRI is used to determine if cancer has spread to the brain.
- Computed tomography (CT) scan with contrast works similarly to an MRI, except it uses x-rays to generate a picture of the body. CT scans are commonly used to determine if cancer has spread to sites outside of the central nervous system (CNS).
- Positron emission tomography (PET) scans are also used to evaluate the cancer and the extent of metastasis to other organs by examining the cell’s metabolic activity.
Most patients with lung cancer will have a CT scan of the chest, abdomen, and pelvis, an MRI of the brain, and a PET scan.
Lung Cancer Life Expectancy
Lung cancer remains the leading cause of cancer-related deaths in the United States. The stage at diagnosis has a significant impact on the prognosis of the disease and treatment options.
The 5-year survival rate for patients that are first diagnosed with stage IV lung cancer is about 5-10%. In late-stage disease, the cancer has spread to other organs, contributing to an overall poor prognosis. The 5-year survival rate is considerably higher if the lung cancer is caught during its earlier stages. However, the 5-year survival rate is projected to continue to improve with advances in modern medicine.
Most notably, genetic testing, immunotherapy, improvements in radiation delivery, increased screening uptake, and targeted medication use is helping patients live longer.
The Graded Prognostic Assessment is a tool that can be used to evaluate patients’ prognoses. It considers the following factors during prognosis evaluation: cancer type, patient’s age, patient’s functional impairment, the presence of metastases outside the brain, number of brain metastases, and presence of genetic biomarkers and certain proteins.
Treatment for Stage Four Lung Cancer
The type of lung cancer, NSCLC or SCLC, and the extent and location of both the primary tumor and any metastases play an important role in therapy selection. The presence of genetic mutations and the expression of certain immune system proteins help the treatment plan to become further individualized.
Immunotherapy
Immunotherapy drugs work by using the body’s natural immune system to fight the cancer cells. When immunotherapy drugs were new, they were typically only used in stage four lung cancer. They are now being used earlier in disease progression.
These medications are used in the treatment of both SCLC and NSCLC. For example, checkpoint inhibitors are immunotherapy drugs that work by preventing the cancer cells from making or binding protective proteins. PD-1 is a protein in immune cells, and PD-L1 is a protein that is made by some healthy cells. When the PD-1 and PD-L1 proteins bind together, that tells the immune system not to attack that particular cell. Cancer cells produce these proteins, which protect them from the immune system. Checkpoint inhibitors disrupt this process. CTLA-4 is another immune protein that works similarly. PD-1, PD-L1, and CTLA-4 are all targets for immunotherapy drugs.
Targeted Therapy
Most patients who test their cancer for genetic mutations will not have a mutation that matches currently approved targeted therapies. However, for the patients that do, it can change the prognosis significantly.
Targeted therapies are very specific and work with certain genetic mutations in the cancer to control it. Because they are so specific, they also tend to have much fewer side effects than non-specific treatments, such as chemotherapy.
Although targeted therapies do not necessarily cure the cancer, the treatment can control the growth and spread of the cancer for several years in some cases. Eventually, patients will become resistant to these targeted therapies, and they will have to change their course of treatment.
Radiation Therapy
In the treatment of stage four lung cancer, one of the main uses of radiation is to reduce the symptom burden by shrinking the tumor. If the metastasis is minimal, it may also be used to treat the tumor. The most common type of radiation is external beam radiation therapy (EBRT), which uses x-rays.
Chemotherapy
Chemotherapy alone used to be the mainstay of treatment for stage four lung cancer. It is now often used in combination with other treatment options, such as immunotherapy, radiation therapy, or targeted medications. Chemotherapy is important in stage four cancer because often, more localized treatment options, like focused radiation or surgery, are no longer possible due to the extent of the disease and metastasis.
Systemic treatment of the body with chemotherapy is useful to slow the progression of further growth of the primary cancer, prevent future metastasis, and relieve symptoms associated with existing tumors. However, chemotherapy works by killing all cell types, healthy or cancerous, that are multiplying quickly, so it does have significant side effects for the healthy tissue.
Surgery
If surgery is possible, it is typically part of the initial treatment. Often, surgery is no longer an option in stage four because of the extent of the disease and the number/location of metastases. If it is not an option at diagnosis, it may become an option later in treatment after chemotherapy, immunotherapy, or targeted medications control the disease.
Palliative Care
Palliative care is a more holistic approach to treatment that focuses on symptom management and improved overall quality of life for the patient. It is often thought to be synonymous with end-of-life care. However, palliative care can and ideally should be started at diagnosis. The team of medical providers works together to reduce the burden of the disease, both in terms of symptoms and mental/emotional stress.
Towards the end of disease progression, it may become more of the focus than traditional treatment options. Early use of palliative care has been shown to improve symptoms and, in some cases, increase survival times.
Moving Forward – Living with Late-Stage Lung Cancer
Due to advancements in the diagnosis and treatment of stage four lung cancer, patients are living longer with this disease. Targeted medications and immunotherapies are allowing patients to live with their cancer controlled for years.
Traditional treatment options, such as surgery, radiation, and chemotherapy, are also improving for the better. There are many resources and online support available to patients to help navigate this complicated diagnosis.
“Stage four lung cancers mean this is a condition you have to learn to live with,” Dr. Geoffrey Oxnard, a thoracic oncologist at Boston University School of Medicine, previously told SurvivorNet. “You have to find a way to control this cancer and allow yourself to live fully with a disease that’s probably not curable.”
The Choice to Share
The choice to share or not share one’s cancer diagnosis is a personal one for anyone facing the disease, even if they’re not a celebrity. While some people choose to share only with close friends and family, others post their entire journey on social media, create blogs and detail their treatments, side effects and doctor reports.
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According to Dr. Renee Exelbert, a licensed psychologist and founding director of The Metamorphosis Center for Psychological and Physical Change in New York, the decision to openly disclose or not disclose one’s diagnosis may be made more complicated for someone in the public eye, as they may feel pressure to serve as a role model, or to use their notable platform for the greater good.
She says public figures and celebrities are often held to a harsher standard, frequently having their appearance and behaviors rigorously evaluated. This might make hiding a cancer diagnosis more difficult and may also make disclosing a cancer diagnosis a greater burden to bear.
Also, just because someone is a public figure or celebrity does not spare them from judgment and the insensitive comments of others, especially while they may be fighting for their life.
Dr. Exelbert says the decision to disclose or not disclose a cancer diagnosis is a very individual and personal one in any case.
“Certain Individuals may feel as though their sense of self has been deeply impacted by their diagnosis, and they want to keep it private. At their core, certain individuals may struggle with appearing weak, vulnerable or sick, and particularly do not want to withstand the opinion or commentary of others while facing a cancer diagnosis,” she explained.
“Additionally, some may feel that revealing a cancer diagnosis may pose a threat to their sense of professional identity and how capable they are perceived by others.”
Dr. Exelbert also said some may feel they don’t have the coping resources to withstand scrutiny, whereas others may welcome the distraction and attention. Most importantly, however, she said there is no right or wrong approach.
“When an individual experiences trauma, which cancer certainly is, they need to be in charge of how their story is told in order to avoid further disempowerment. Thus, the decision to disclose or not to disclose should be wholly and rightfully left up to each individual.”
So, is one way more beneficial than the other? Dr. Exelbert says there are pros and cons to sharing.
“A positive aspect of sharing one’s diagnosis on social media is the potential to receive an outpouring of support, occasionally from people all over the world who have experienced something similar, and who may be able to offer useful suggestions,” Exelbert says. “Additionally, someone’s unique story may catch the attention of those performing clinical trials or offering unique treatment options, looking for participants.”
She said the ability to inspire countless people with one’s experience and story can also be a very powerful motivating factor.
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“Some individuals are looking to chronicle their journey, almost as testament to what they have experienced and to leave a legacy. It might additionally be beneficial to publicly share one’s story, as it can serve as a platform to educate others about cancer and its emotional and physical symptoms, as well as challenge stigma and change society.”
On the other hand, she says a con of revealing one’s diagnosis on social media is that people may share unsolicited stories of poor outcomes that they have either heard about, or experienced personally, many of which are unrelated to your particular situation. For example, some may tell you they know someone who had the same type of cancer, but died, which can be overwhelming and create undue stress.
“Additionally, once you share your diagnosis, you often have to manage the emotional experience of others,” Dr. Exelbert told SurvivorNet. “Sometimes, people will be very upset by your diagnosis and need you to take care of them or make your situation easier for them to deal with. This can prove quite difficult when you are barely in control of managing your own emotions. Further, many individuals might find it quite difficult to present themselves in such a vulnerable way on social media, as many often utilize this medium to garner accolades from presenting their ‘ideal self’ versus their ‘real self.’”
No matter what someone’s choice is when it comes to sharing a cancer diagnosis, the most important thing is that they feel support. For some, support from a few close friends, family members or professionals may be enough, while others need to feel connected on a larger scale. The last thing anyone needs is to be made to feel bad about that choice.
It’s important to remember that due to cancer treatment not being a one size fits all approach, it affects everyone different mentally, and not everyone feels comfortable sharing what they are going through with others in social situations.
Do I need to share my diagnosis with others? Psychiatrist Dr. Lori Plutchik weighs in.
Contributing: SurvivorNet Staff
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