“Tienes cáncer de pulmón”
(You Have Lung Cancer)

“You have lung cancer” is difficult to hear in any language. For Hispanic Americans, this frightening news can be compounded by a number of barriers that make it hard to access high quality lung cancer information and care. (We also address this topic in our Backstage at Upstage podcast “¿Está el doctor?”.)

To begin with, the Hispanic population, which makes up approximately 17-18% of the US population, is not a singular group but includes people who trace their heritage to more than 20 Spanish speaking countries. Each of these countries has its own traditions, beliefs and cultural factors that can lead to barriers in access and affect how a person approaches health issues and medical care. For example, among Hispanic Americans there is a strong sense of family obligation and people often don’t want to burden their families with disease or health concerns. Family attitudes may also impact whether someone even goes to a doctor or seeks a diagnosis in the first place. A belief in folk healing as well as religiosity and spirituality among many Hispanic Americans are also important factors. In Mexican culture, for example, there is a strong conviction that life is in God’s hands and that natural remedies using herbs are the most effective way to heal illness.

Language is often another barrier to excellent medical care. Federal law requires hospitals to provide linguistic services for people who only speak Spanish or who have limited English proficiency. However, in practice many patients find themselves in situations without qualified medical interpreters and may rely on family members for interpretation. Poor communication between patients and providers can contribute to errors, compliance issues and disparities in outcomes for Hispanic Americans. Or cultural attitudes may limit how much information the family member even shares with the patient. Even with a qualified medical interpreter available, it can be difficult for a patient to trust a third party stranger in the room, and the quality of interpretations can vary. In addition, there may be less opportunity for the provider to ask non medical questions that might help build rapport with the patient and provide additional insights into the patient’s situation.

Compounding these cultural and language factors are high poverty and low literacy levels – approximately 24% of Hispanics in America live below the poverty line and 35% have less than a high school education, which can affect their health literacy. Hispanic adults are less likely than other Americans to have health insurance and to receive preventative medical care, which can make them less likely to receive an early diagnosis, when cancer is more easily treated or cured. A further complication exists for those without permanent legal residence. Fears of deportation can lead to reluctance to seek help in the first place.

The good news is that there is growing awareness that more needs to be done and interest in addressing these barriers. Medical schools provide training in which students learn to ask questions that cover all aspects of meeting with patients, including taking their social history for information about occupation, marital status, living arrangements, hobbies, pets, and use of substances including tobacco and alcohol. Medical students also receive training about the social determinants of health, which are non-medical factors that can influence health outcomes. Social determinants of health include income and social protection; education; unemployment and job insecurity; working life conditions; food insecurity; housing; basic amenities and the environment; early childhood development; social inclusion and non-discrimination; structural conflict; and access to affordable health services of decent quality.

Some cancer centers have Spanish language networks and support groups for patients. In addition, there are Spanish language resources available that can help Hispanic patients and caregivers access information about lung cancer to better understand their disease and the treatment options available.

The following government, medical and patient organizations have Spanish-language lung cancer resources and information available; those that offer Spanish-language hotlines are noted with “linea telefonica.”

• A Breath of Hope
• American Cancer Society
• American Lung Association
• American Society of Clinical Oncology, a medical organization
• American Society for Radiation Oncology | VIDEOS
• American Society for Radiation Oncology | PRINT
• Cancer Support Community
• CancerCare (+ linea telefonica)
• LUNGevity resources about lung cancer biomarkers
• National Cancer Institute, a government agency (+linea telefonica)

Behind the Scenes:
The Experience of Being A Caregiver

Although being the caregiver for someone with lung cancer is a very different experience than having the disease, it gives caregivers an intimate look into having lung cancer and the challenges that come with it. There are many lessons to be learned. So, I approached a couple of caregivers and asked them to talk about their experiences and if they had any advice to share with others who are going through the same thing.

I spoke with Robin DiPaolo, who has been the caretaker for someone with lung cancer not once, but twice. The first time, it was for her mother, Hildy Grossman, the founder of Upstage Lung Cancer. Hildy discovered her lung cancer at an early stage, by accident, and was able to treat it only with surgery. Robin works as a hairdresser, and her mother’s diagnosis was her first exposure to cancer from someone close, in her family and with someone she loves. She said she had had a number of clients who went through a cancer diagnosis, as well as some who were serving as a caretaker to someone in the family.

Looking back, Robin explained to me how important it is to take a minute to process your emotion when you first hear about a cancer diagnosis. Clearly, that’s true for the patient but also true for those in their support system. For Robin, caring for her mother proved difficult because she lives 1,000 miles away, in a different state than her mom.

“That was hard,” Robin said, adding that “the distance is horrible,” and it was difficult not to be able to be with her for every doctor’s appointment. Although her mother’s treatment was successful, Robin pointed out that it is still difficult for her mother to live the rest of her life with the concern that lung cancer could come back.

Five years later, Robin once again found herself serving as caregiver to a good friend with advanced lung cancer who unfortunately lost his battle. His symptoms were initially misdiagnosed as a sinus infection but turned out to be a grapefruit-sized tumor that spread to his lungs. She wanted to help. She quickly discovered that there is “a lot of detail in caring for someone who has cancer.” Many of Robin’s caretaking efforts centered around helping with her friend’s treatment. She attended doctor’s appointments with him, took notes and was there to help her friend remember all of his questions. She took care of him after surgery, stayed with him as part of a care team, helped with managing medications, monitored his pain levels and eventually decided when it was time to call hospice. She also helped with the emotional aspects of the disease. She tried to help by trying to keep a positive outlook and by making him laugh.

Robin said a frustrating part of being a caregiver revolved around the difficulty of finding information. For example, she said she had to become a detective while serving as her friend’s advocate in navigating insurance issues and researching the best diets for cancer patients. She added, “There just isn’t enough information for caregivers. I wanted there to be a packet of useful information to take home from the hospital when a loved one first got diagnosed with lung cancer”, she said.

Mala Shah mentioned additional issues. She served as a caretaker for her husband who had an
inoperable neuroendocrine tumor. At first, she said that her husband “didn’t want anyone to take care of him” because it felt too much like acknowledging the disease. To avoid additional stress, Mala focused on taking care of things around the house, and having water bottles and tissues placed throughout the car and house to help her husband with intense bouts of coughing. She also served as the notetaker during her husband’s appointments.

As the disease progressed, and her husband transitioned to the hospital for much of the last six weeks of his life, caregiving took a different form by “being in the hospital 24/7, unless someone else was with him.” She continued taking notes in doctor visits as well as other medical staff to help create a summary of his recent treatments for anyone new who came to provide care. She said her key effort was in supporting his medical decisions, including adding massage and acupuncture as part of his treatment, and continue them when he realized how much they helped him feel comfortable.

Another person I spoke with said she had been caring for her father-in-law when he was diagnosed and while he was living with her and her husband. She said, from the start, it was a difficult diagnosis. “I was the first to hear from the ER doctor.” She called an ambulance when he was struggling to breathe. “It gutted me when I heard his diagnosis,” she said. “My husband was traveling for work at the time, so I was the one who had to tell him the bad news.” After that, she became the medical proxy for her father-in-law, taking responsibility for most aspects of his care. She said, “I was well versed, previously, in navigating the medical care of a loved one. Physically, I didn’t mind doing whatever was needed,” she said. “I was happy, actually, because I loved my father-in-law, and he loved me very much. But I struggled with navigating emotional issues that came up, including a strained relationship between my husband and his father. My husband resented his dad for adding more to the burden of our family life with three kids, and for making me, his wife, take care of him.” She explained that, “I come from a culture of unconditionally taking care of your elders and being there for them.” She agreed with her husband that her father-in-law could also be difficult because of his approach to treatment. “He was pretty headstrong and just didn’t really listen to doctors and the advice he was given. He did what he wanted,” she said. “That was the most difficult aspect of caring for him. “I felt I was always trying to get him to see what was best for him, but he wanted to do things his way.”

All three caregivers had advice for anyone who finds themselves serving as a caregiver to someone
with lung cancer. Here are some suggestions:

1. Order an excellent free book for caregivers, “Lung Cancer Choices” from Caring Ambassadors,
2. Keep a journal and document everything related to the illness.
3. Find information to look for clinical trials at the American Lung Association: Find a Trial.
   (see )
4. Find lung cancer organizations that provide direct support for patients and their families (see LUNGevity, GO2 Foundation for Lung Cancer, The American Lung Association.
5. Gather other supports for yourself as you try to help your loved one. Being alone with the care, responsibilities and emotional challenges can be overwhelming without support for yourself. You’ll need and want people who can care for you. Don’t be afraid to ask for help.
6. If you aren’t able, try to find someone who can help advocate for the patient in medical situations. That might include other family members, friends or clergy. If you feel treatment suggestions aren’t the best, having an advocate accompany you to visits can be a big help.
7. Respect the dignity of the patient as you offer your suggestions. Patients and caregivers both need a voice. Be aware that having a voice is important and being able to listen is important.
8. Consider discussing palliative care and hospice with the doctor and loved ones if the time comes. While this can be the most difficult part of caring for someone, as well as for yourself, it can provide care and comfort to all.

As Robin said, caring for someone with a serious illness like lung cancer “changes you. You’re never
going to be the same.” As she reflected, “my caregiving experiences, both positive and negative,
taught me about resilience and being strong.” She hopes that she is able to pass that on.

Transforming the Trauma of Cancer and Its Aftermath

I was 32 and a brand-new mom when I was diagnosed with lung cancer. At the time, it was a complete shock and seemed so unexpected. How could I, an otherwise healthy young woman, with no significant tobacco history, have lung cancer? 

Over time, however, I began to understand how much of what I had experienced in my life, up until that point, had set the stage for coping with a major health crisis like lung cancer. Because I had an interest in alternative ways to help with healing, I followed my instincts and explored acupuncture, Chinese herbs, massage, therapy and reiki to help support a deeper healing. I learned more and explored mind/body connections through the work of pioneer Louise Hay and her book, “Heal Your Life”, where, according to her mind/body theory, “Unexpressed grief and depression can get stuck in the lungs.” I thought about this deeply. With this intense focus on mind/body healing, I  felt in my heart that all the trauma and abuse I had experienced had weakened my body and devastated my health. While shocking, my diagnosis made sense as viewed through a mind/body lens. How thought, beliefs and perspective can help to influence the body for the better or for worse.

I have learned a great deal about focusing on wellness, despite cancer and traumatic circumstances. I have worked for years as a patient advocate, and collaborated with Upstage Lung Cancer on helping to share patient voices at Spring, Sing Out Concert series. Recently I recorded a podcast for Backstage @ Upstage.

It is now twenty-five years since my shocking lung cancer diagnosis, and it feels like the perfect time to share all I have learned through a new organization I have created Resilient Souls, an online resource and platform for women who have received a diagnosis of any type of cancer. In addition, I am launching a brick and mortar studio, Resilient Soul Yoga, in Colorado. The goal is to aim for resilience!

The Power of Screening for Lung Cancer

December 5 – 9 is lung cancer screening awareness week. Screening can save your life or the life of someone you love.

Sixteen years ago, I was lucky enough to have found my lung cancer by accident! My incredible story is on our Upstage Lung Cancer website. It was only though a series of mishaps that I found out I had lung cancer. It was at the earliest stage. Because of that, I’m grateful to say I’m still here to tell the story and celebrate my life with friends and family.

I’ve learned a lot about lung cancer over these years. One thing I know for sure is that we can’t rely on accidental happenings to detect lung cancer. This disease remains the number one cancer killer, for both women and men throughout the world. Fortunately, we now have the opportunity, for those who qualify, to have low-dose CT scans to detect lung cancer earlier.

While smoking is still the leading cause of lung cancer, many people are diagnosed each year who don’t currently smoke or who never smoked. Now, we have evidence that annual screenings with low-dose CT (LDCT) can save lives. Currently, the 5-year survival rate can improve from 25% to 64%, if diagnosed early.

People at high risk include individuals 55 to 77 years old, current and former smokers, those who have quit in the past 15 years and meet certain other criteria, those who have a 20 pack-year history, people exposed to cancer-causing substances in the workplace and people who have a personal or family history of lung cancer or who had previous radiation therapy to the chest.

Please talk to your doctor if any of these criteria apply to you. Screening can be free or low cost if you have coverage through the Affordable Care Act, have Medicare and Medicaid Services. You may also check cost with your own insurance carrier.

DON’T WAIT TO GET SCREENED. Symptoms of lung cancer don’t appear until later stages, so get more information today.

To help you find where you can find lung cancer screening in your area, use The American College of Radiology Lung Cancer Screening Locator Tool.

Please share this information. We’re all in this together!

From Impacts to Action: Telling the Stories of ULC Board Members

Upstage Lung Cancer board members are behind every show, grant, podcast and blog post that the organization gets or creates. Inspired by their hard work, I asked them what made them want to join the organization’s board in the first place.

Don Warnock has been with the nonprofit’s board from the beginning. He is active in the Boston creative scene, runs a film company and is involved with theatrical productions and cabaret performances. Don got to know Upstage Lung Cancer founder, Hildy Grossman, through their involvement in music and theater. According to Don, Hildy “knew I was a technical director and asked if I would join the board.” Since then, he has handled the lighting and technical aspects of all of the live shows that Upstage has held.

He felt motivated to join both because of his friend, Hildy, because health has always been of interest to him, and as a chance to use his creative talents more frequently. “Most people who are in theater would like to do more theater,” he notes. For him, Upstage Lung Cancer is “not just about getting money or putting on a show.” Instead, it can “appeal to people about what else they want to do” in relation to lung cancer, other health issues, and making a difference.

Upstage Lung Cancer’s treasurer, Nancy Swan, joined the board at the recommendation of her sister, Jane, who had lung cancer. When she got the news about her sister’s diagnosis in 2011, it was the last thing that Nancy expected. “It was just a shocking diagnosis for someone who had always taken care of herself, not to mention a never smoker,” she said. Jane was involved in the Boston music community as a classical musician, church organist and choral conductor. “She and Hildy had a mutual acquaintance in the local music world who introduced them. When Jane met Hildy, she mentioned she was looking for a treasurer for the organization and Jane recommended me, as I have some business background and bookkeeping experience,” Nancy said.

Although she first heard of Upstage Lung Cancer through her sister, the cause also appealed to Nancy. “Hildy and I hit it off and share some common interests, I found her story compelling and liked the idea of doing something, however small, to try to change the lack of early diagnosis for lung cancer. So, I’ve been the treasurer ever since!” Nancy explained. In addition to her duties as a treasurer, Nancy initially helped out with organizing the group’s silent auction, selling tickets and merchandise, but has lately shifted her focus exclusively to Upstage Lung Cancer’s finances.

Connections to family and friends who had been impacted by lung cancer also motivated board member Dale Appel to join Upstage Lung Cancer. Her father had a lung disease and was on oxygen, though Dale was never able to confirm that it was lung cancer. The disease’s impact on other people in her life was clearer: Her paternal grandfather and cousin died of lung cancer, and she also knew a friend who was diagnosed with it, but never smoked.

Dale got involved with the board for Upstage Lung Cancer the second year after it started. She went to the first ULC fall concert and helped out as a volunteer with the silent auction. Then she was able to join the board shortly after. As part of the board of directors, she helps out with PR, editing written materials and also pens some of the personalized thank you notes to Upstage Lung Cancer’s donors. Dale points out that many members of the public have little awareness of lung cancer and its affects, but the statistics hit differently once family members are impacted. “Most people are not aware how many people die from lung cancer,” Dale said, adding “when people in your family get it, you ask ‘Why aren’t there more people researching this?’”

She may be unable to change the past, but Dale hopes for future improvements for her relatives’ sake. “As a mother and grandmother with this in my family, I want better options for my children and grandchildren.”

From Survivor to Thriver
A Personal Story

“I don’t feel like myself anymore. What’s the point? What’s my purpose?”

As a life coach for cancer patients, and as a cancer patient — I hear this question all of the time.

I lived this question for 3 years before I found my way to the answer.

I was diagnosed at 34 years old (6 years ago!). Cancer ripped up every root that I had planted. Every single facet of my identity was unearthed & burned to ash. Leaving me with a husk of the vibrant young woman I once was.

Constantly, I asked: what’s the point? What’s my purpose?

Deep underneath was a thought driven by pure terror: I am going to die. If I’m going to die, what’s the point in pursuing a dream, setting a goal or making future plans?

It took disease progression, 3 seizures and a gaping head wound to wake me up.

We say, “Who knows, you could get hit by a bus tomorrow! No one knows when they will die!”, as if this statement is helpful. Conciliatory. Useful. As if it’s supposed to make you feel better.

It’s not. It doesn’t. It’s a cop out. It’s an excuse to avoid big ambitious goals. It’s a sneaky reason to sit back watching the minutes turn into hours, turn into weeks & months.

I woke up in a hospital bed after my seizures and my first coherent thought was that I had NOT been living my life right (and yes, my brain was not grammatically correct.) I was an epic failure at cancer life. I spent three years going to work to pay the bills. Coming home completely wiped out (thanks fatigue!). I grumbled my way through the things that had to get done. I was angry. I snapped at the people I loved the most. I turned inward. I shriveled up and died every single day.

I was NOT my vibrant loving self.

I questioned everything. Should I even bother contributing to my retirement plan? What’s the point in planning a trip? I’ll probably be too sick. Why am I wasting this precious time working for someone else, living to work… and that’s it?

Underneath those questions lurked the BIG question: what is my purpose?

That question is THE question.

It’s the one that fills you with fear. It’s uncomfortable. It gives your brain a ripe breeding ground for scary thoughts to crop up… the thoughts that make you a victim. The thoughts that you could never speak out loud. The darkest fears. The cobwebs that catch you and drag you down.

But, it is also THE question to fuel your internal fire.
I took my understanding “I am not doing my life right”, applied some creativity and a LOT of persistence, to create a purpose. Yes. I created my purpose.

THE purpose.

I am creating a life I love using my mindset tools. I am the proud owner of a “cancer thriver toolbox” filled with all the biggest, shiniest & most useful tools so that I never question whether I am doing my life right.

I became the person I needed back then, when I was skulking through the day… wondering “what is my purpose”? I became a life coach. THE life coach for cancer patients.

I created a belief that the VERY reason why I am living with cancer and why I am here, outliving statistics (twice!) is so that I can BE this person for others. I am a cancer patient because it is my purpose.

With my clients, we work together to create their purpose. To find the little seed, plant it, nurture it, water it and grow it.

Let me be clear. MY purpose is MINE. The purpose for my clients are both grand and small. The common denominator for each person’s purpose is simple.

Creativity.

Stick with me here.

Creativity leads to passion. Passion leads to purpose. Creativity doesn’t mean singing or painting or playing music (although if it does for you, I’m jealous!)

Creativity is using your mind to assess your life to find the things that light you up. It’s being curious: how can I cultivate more of this? Followed by taking action: trying on the things that light you up (even picking up old hobbies) and being creative with what you learn.

Create the life you love by bringing in MORE of the things that light you up. When you do that, you find your purpose.

It’s a pretty easy formula: find the things that light you up PLUS do more of those things, then SUBTRACT the things that suck you dry.

There is no right or wrong way to do this. Go back and read that again.

There is no right or wrong way to do this.

I promise.

You can CREATE the life you love. You can create your own passion. You can create your own purpose.

Your purpose can be YOU, fully present with your family without cancer fear creeping in.
Your purpose can be YOU, making the best memories with your spouse
Your purpose can be YOU, wearing a daring red lip as you reconnect with old friends.
Your purpose can be YOU, pursuing your dream of becoming a yoga instructor.
Your purpose can be YOU, a talented seamstress.
Your purpose can be YOU, adopting a dog & being the best dog mama out there.
Your purpose can be YOU, loving your newly retired life.
Your purpose can be YOU, volunteering your time & skills to a cause you are passionate about.
Your purpose can be YOU, running a business successfully.

If you want to learn more about my signature 1:1 coaching program From Survivor to Thriver, where I can help you create a thriving life that you love, send me an email.
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Linking Our Voices to Make Congress Listen: Research Matters!

Below is a letter to the Department of Defense, generated by members of LungCAN, a collaboration of lung cancer advocacy organizations throughout the USA. ULC has been a member of LungCAN for many years. There is power in linking our voices together, and we urge the DOD to fund desperately needed, significant lung cancer research.

Dear Member of Congress,

As organizations representing lung cancer patients, veterans, caregivers, doctors and researchers, we urge you to support $60 million for the Lung Cancer Research Program within the Congressionally Directed Medical Research Program (CDMRP) in the Fiscal Year 2023 Defense appropriations bill.  

We were deeply frustrated to learn that in FY21, because of a lack of funding, the Lung Cancer Research Program was forced to reject 82 out of 119 research proposals rated excellent or outstanding by reviewers (70%). This represents 82 missed opportunities to advance novel, desperately needed technologies and treatments to fight America’s top cancer killer. A $60 million appropriation could have funded all of these high-quality proposals. We ask you to support lung cancer patients by making this critical funding commitment now.

The past two decades of medical research have brought new hope to the approximately 235,000 Americans diagnosed with lung cancer each year. Diagnostic, surgical and therapeutic innovations have increased the five-year lung cancer survival rate by 14% to 23.7% over the past five years. However, 23.7% lags significantly behind almost every other major cancer. Without a cure, lung cancer patients, most of whom are diagnosed at advanced stages, confront the terrible reality that their current cancer therapies will inevitably fail. Lung cancer patients’ survival depends on significantly more research into everything from early detection to treatments that combat resistance to existing therapeutics.  

Despite many scientific advances, lung cancer remains the country’s leading cause of cancer deaths among women (21%) and men (21%). Each day, more than 350 people die of lung cancer, which is more than those who die of breast, prostate and pancreatic cancers combined. It is 2.5 times more than those who die of colorectal cancer, the second leading cause of cancer deaths.ⁱ

Veterans are at significantly greater risk for lung cancer and are diagnosed at higher rates than the general population. The Veterans Health Administration (VHA) estimates that 900,000 veterans are at risk for lung cancer due to age, significantly higher rates of smoking—particularly among those deployed—and toxic exposures during military service and after.  

Even though lung cancer has the highest mortality rate of all cancers, is the second most prevalent cancer among VHA patients (18%), and has by far the most VHA patients (58%) who are diagnosed at stages three or four,ⁱⁱⁱ it received only 3.46% ($20 million) of the $577.5 million in CDMRP cancer funds in FY22, less than every named CDMRP cancer except one.

CDMRP’s Lung Cancer Research Program accelerates high impact, translational research, making it essential to lung cancer patients who are in a race against the clock to find novel, life-saving treatments. While we ask for a major increase for the Lung Cancer Research Program, we strongly support raising the overall federal funding level for all cancer programs. We don’t want new funding of any individual cancer to come at the expense of any other cancer. 

With its history of bipartisan support for NCI, CURES, CURES 2.0, ARPA-H and the Cancer Moonshot, we urge Congress to appropriate sixty million dollars for LCRP to better reflect and respect lung cancer’s real and devastating impact on service members, veterans, and all Americans. Sixty million dollars is a critical, overdue step toward addressing the unmatched burden lung cancer has inflicted upon too many Americans, their families and their communities. We have been at the back of the line for too long.

Thank you for your thoughtful consideration,
A Breath of Hope Lung Foundation
Addario Lung Cancer Medical Institute (ALCMI)
ALK Fusion
ALK Positive
American Association of Radon Scientists and Technologists Foundation (AARST Foundation)
American College of Radiology (ACR)
American Society for Radiation Oncology (ASTRO)
Association of Community Cancer Centers (ACCC)
Biomarker Collaborative
BRAF Bombers
Breath of Hope Kentucky
Breath of Hope Ohio
Burn Pits 360 Veterans
Cancer Survivors Against Radon (CanSAR)
Caring Ambassadors
Cease Fire Campaign
Chris Draft Family Foundation
Citizens for Radioactive Radon Reduction
Clifton F. Mountain Foundation for Education & Research in Lung Cancer
EGFR Resisters
Eon 
Exon 20 Group
Free ME from Lung Cancer
Georgia Center for Oncology Research and Education (GeorgiaCORE)
Georgia Lung Cancer Round Table
Georgia Society of Clinical Oncology (GASCO)
GO2 Foundation for Lung Cancer
International Association for the Study of Lung Cancer (IASLC)
International Cancer Advocacy Network (ICAN)
Kentucky Academy of Family Physicians
Kentucky Cancer Foundation
Kentucky Cancer Link
Kentucky Cancer Program
Kentucky Health Collaborative
Kentucky LEADS Collaborative
Kentucky Medical Association
Kentucky Society of Clinical Oncology
KRAS Kickers
LiveLung
Lung Cancer Action Network (LungCAN)
Lung Cancer Connection
Lung Cancer Foundation of America
Lung Cancer Initiative
Lung Cancer Research Foundation
LUNGevity Foundation
LungLife 
MET Crusaders
Prevent Cancer Foundation
Rescue Lung Society
Respiratory Health Association
RET Renegades
Rexanna’s Foundation
Ride Hard Breathe Easy
Society of Thoracic Surgeons
St. Elizabeth Healthcare
Tennessee Academy of Family Physicians
The Patient Story
The ROS1ders
The White Ribbon Project
University of Hawaii Cancer Center
Upstage Lung Cancer

Lung Cancer Early Detection: Expanded Screening

I met an old friend for dinner recently. She got comfortable in her chair, tucked her purse under the table and ordered a tea when the waitress passed by. Mindy (not her real name) is very petite, short curly hair, quiet and health conscious since childhood. Her mother and father were committed to macrobiotics, a plant-based diet and lifestyle that aims to help people live their best physical, mental and spiritual lives. Ironically, they would chain smoke while grinding their own peanut butter at home. My friend said her family was passionate about eating food that was grown locally and in season, yet rode in a smoke-filled car with the windows rolled up as they drove out to an organic farm where you could pick your own vegetables. The smoking was such a crazy contradiction to their healthy diet, but it was the 70’s. Health consciousness followed Mindy into adulthood as did the shadow of the smoke she grew up around. She had been a smoker herself, for a couple of years as a teenager. She quit when she was pregnant with her first child and never started up again. She and her husband continued the healthy lifestyle she felt so committed to. While I knew this story from early on in our friendship, it came up again when she said she was so angry to have followed someone into the restaurant who had been smoking, blowing smoke she had to walk through and then throwing the butt into the parking lot.

The waitress set tea on the table, and we talked about our day. Mindy said she’d just had a frustrating conversation with her doctor during her annual check-up that afternoon. She started by reminding her doctor that both of her parents, an aunt, and one grandparent passed away from lung cancer. Mindy said she told him she was worrying, because she and her brother were raised from birth in a house filled with secondhand smoke. She told her doctor that she had a friend, me, who was working with Upstage Lung Cancer, and she wanted to have a referral for a baseline low dose CT scan, now that she was forty-five. Her doctor said that as a non-smoker she did not qualify as high risk according to The U.S. Preventive Services Task Force (USPSTF) guidelines. Mindy didn’t know much about the current guidelines for screening, but she had intimate knowledge of how lung cancer can be found far too late. She also knew she had some compelling risk factors that did not fit into current screening guidelines. Mindy told me she was determined to have a baseline scan, even pay out of pocket if she had to. Currently folks like my friend Mindy and others who may have genetic or environmental risk factors must advocate to receive LDCT screening, or pay out of pocket.

Need for Early Detection

For all cancers, early detection is vital to better healthcare outcomes. Currently, screening for lung cancer is only by low dose CT scans. While an x-ray can show larger tumors, a low-dose computed tomography (also called a low-dose CT scan) shows a three-dimensional image put together by the computer combining multiple images taken by a CT machine. Possible tumors are able to be identified at greatly reduced size and with far greater accuracy compared to a standard Xray. Over the past decade the use of LDCT screening has allowed for significant progress in treatment. Early-stage detection of lung cancer is when the disease is most treatable, and those who qualify would benefit from regular screening. If found early, survival almost triples.   

As of February, 2022, the Centers for Medicare & Medicaid Services (CMS) announced a national coverage determination (NCD) that expands coverage for lung cancer screening with low dose computed tomography (LDCT) to improve health outcomes for people with lung cancer. Major changes include

• Lowering the starting age from 55 to 50 years
• Extending the age for screening from 77 to 80
• Reducing the tobacco smoking history from at least 30 packs per year to at least 20 packs per year.

My friend Mindy is a determined person with means. I have no doubt she will get her needs met. Yet, there are many people in the underserved populations and people without adequate access to accurate information who will not yet receive the attention they need.

The expanded scanning criteria allows for greater access to imaging and insurance coverage for more patients who are at risk. However, GREATER EFFORTS ARE NEEDED TO BE MORE INCLUSIVE FOR THOSE WHO WANT AND NEED A SCAN.

Most insurance plans and Medicare help pay for patients who qualify for lung cancer screening tests. Check with your insurance plan to find out what benefits are covered for lung cancer screening. For more information about Medicare coverage, visit medicare.gov or call 1-800-MEDICARE (1-800-633-4227).

For additional resources visit:
Lung Cancer Screening Facts & Figures – GO2 Foundation

When One Door Closes, Another One Opens

Life is not the way it’s supposed to be.
It’s the way it is.
The way you deal with it is what makes the difference.
– Virginia Satir

Alexander Graham Bell said, “When one door closes, another one opens.” However, he added, “but we often look so long and so regretfully upon the closed door that we don’t see the one which has opened for us.” This concept perfectly reflects my experience after being diagnosed with lung cancer in 2007.

Of course, it is natural, after a loss or shocking news, especially a diagnosis of lung cancer, to focus on the proverbial door that’s closed. That was true for me. Did I have a future? It certainly seemed uncertain. I was diagnosed, by accident, at the earliest stage and only had surgery to remove the cancer from my lung. But I focused on my diagnosis, what had just happened to me out of nowhere. I remember wondering if I should buy any new clothes, because I didn’t know how long I would be around. Because of my accidental, early diagnosis, I had good reason for optimism. Still, it took time to feel less anxious about what had happened and what was ahead. I was left with the echoes of the door slamming.

Then, just as my diagnosis seemed to come out of the blue, in 2013 came an invitation for a fellowship in women’s health and leadership. This program involved an exchange program between women heads of NGOs in Brazil and their counterparts in Massachusetts. Our Brazilian participants would partner with counterparts in Massachusetts heading their own cancer organizations. What a wonderful opportunity! I knew almost nothing about Brazil, so the chance to work closely with, and get to know Brazilian women, seemed like a gift dropping down from the heavens. The Brazilians would come to the USA for two weeks and, in turn, we would go to Brazil for 2 weeks. I remember thinking at the time that horrible things happen and wonderful things happen. What a balance in the universe.

I was so fortunate to have two women to work with. Marcelle Madeiros, from Rio, started a cancer organization after her sister lost her life to breast cancer. Her organization focuses on educating women and helping them acquire wigs after losing their hair to chemo. My other partner, Joana Jeker Dos Anjos, was from the capital of Brazil, Brasilia. After this young woman lost her breast to cancer, she used her energy and power to change government health policies to guarantee breast reconstruction surgery. While Marcelle and Joana were in Boston, they worked energetically to help me spread the word about lung cancer, and they were “hands on” in helping with a concert Upstage Lung Cancer was planning that Spring. Working together created a deep, lasting friendship and mutual admiration.

Two weeks later, all of us, Brazilians and Americans, gathered in Sao Paolo, Brazil. Most memorable was what a warm, loving and kind people the Brazilians are. We were greeted with hugs and departed with sweet gifts of remembrance. Our first meeting, at the Governor’s palace, was led by the police commissioner for Sao Paulo who was also president of the State Council on Women. She not only discussed medical care for women, but also described creating the first police station in the world specializing in women. How astounding to have police stations, now many more, protecting the medical and physical health of women (including rape cases) as well as addressing discrimination in the workplace. The purpose was to influence public policy and practices. Wow. Respect and protection for women taken seriously. I felt inspired to be sure to keep this perspective and need in mind, and to address women’s issues in lung cancer whenever I could.

So, the door to Brazil opened to a new vista for me. After meeting a group of wonderful women, locally and in Brazil, I then had the opportunity to travel to Rio and to Brasilia. Both experiences had a huge impact on me.
In Rio, we went to a favella, an area of the urban poor on a hillside on the outskirts of Rio. These areas have been known to be dangerous and home to drug dealers. My friend Marcelle arranged for an afternoon meeting with local residents, where medical professionals came with information about breast cancer and welcomed questions from the audience. This created an opportunity to eliminate any misperceptions in the community about how women get breast cancer and what screening and treatment options offer. After the exchange, there was a van available outside for women to immediately get mammograms, right there in their neighborhood. I thought this concept would be very beneficial to set up in our own communities. I thought about replicating this idea to provide information about lung cancer, and to have screening immediately available in a nearby van. It seems to me the best way to eliminate fears and distorted information is to have knowledgeable people available for conversation and answers. I’m hoping we can be a part of this kind of innovation in the future.

When I joined Joana in Brasilia, I went to see public and private hospitals. In one of the public hospitals, I had the consent of a patient who had recently undergone reconstructive surgery to see her new breast. Her doctor was also present and he spoke of the meaningfulness of this work. Witnessing the gratitude on the woman’s face, and knowing the hard work Joana had done to facilitate the opportunity for this treatment for underserved, public communities, had me crying in the hallway after leaving the woman’s room.
It has been nine years since my trip to Brazil. I continue to have dear relationships with many of the women involved in this project, here and in Brazil. This fortuitous experience opened a door I never expected to have in my lifetime. I’ve seen what it means to give everything you have to make a difference, even when the odds are stacked against you.

Since my diagnosis of lung cancer, I’ve had the good fortune to have made many friends in the lung cancer community: patients, families, medical professionals, advocates and pharmaceutical representatives who also advocate for patients. Because of the many dedicated people I’ve met, I now know the meaning of what it means to be a hero. A hero is someone who faces terrifying odds and still manages to persevere, sometimes a day at a time. I’ve had the honor to have made a friend who lived for many years with advanced lung cancer and who chose to join in several different clinical trials, including Phase 1 trials. Of course, she hoped they would help improve her own situation, but also, she wanted to do it for others who might be able to benefit from her participation and new medication that could become available.

My friend, Betsy Neisner, who was one of the women who was part of our Massachusetts delegation, kept a brilliant account of our journey to Brazil. She shared with me some of the ideas she brought home with her. They included: celebrate the agency of the group and the connections we made; educate those with authority to influence them to create change while asserting our rights and demands for improvement; and find the common bond and weave together diverse strands to create a more powerful movement.

I remain empowered and energized to keep trying to invest in the most excellent early detection lung cancer research possible. Research matters. Also, I’ve opened new doors with our podcast series, blogs and our concerts, Upstage Lung Cancer will continue to get the word out about lung cancer. Lung cancer can happen to anyone with lungs, so be bold and join our effort to do what you can.

Clinical Trials: Courage and Hope

Upstage Lung Cancer recently posted an informative podcast about clinical trials Clinical Trials and Tribulations: Upstage Lung Cancer (Podcast). Guests on the podcast are Diane Legg, Linnea Olson, Lecia Sequist, MD, and Upal Basu Roy, PhD. The discussion included personal experiences with clinical trials, debunking myths about clinical trials and opportunities as well as barriers for patients interested in clinical trials. Whether you are currently undergoing cancer treatment, supporting someone who is in treatment or would simply like to know more about clinical trials, I highly recommend listening to this podcast.

When I finished listening to this wonderful podcast, I thought about how little I knew about clinical trials, beyond their basic purpose to investigate medical, surgical or behavioral interventions for a disease. Listening to the Backstage @ Upstage podcast inspired me to set out to do a little informal research to learn more.

Clinical trials are the primary way researchers can evaluate a new treatment. As such, it is possible to learn if a new drug or interventive technology is safe, effective or most suited for certain populations of patients. Health authorities like the FDA regulate clinical trials, and patients are informed about benefits and risks, and can stop at any time. During treatment, patients who volunteer to receive treatment may be able to receive cutting edge treatments, current standards of care, or they may receive a placebo.

Modern clinical trials are not simply offered as a last resort. Today, there are a wide range of reasons for considering a clinical trial. Clinical trials can screen for and prevent disease progression and target those who may best respond to the medication or protocol. Biomarker testing can offer important data to help match a patient with a current trial of targeted therapy. Some patients with advanced disease may prefer a clinical trial over current standard of care to buy more time. In this case, some patients will go on to another clinical trial when it is warranted or gives more hope for effectiveness.   

Unfortunately, in the US, for some time now, estimates are that only 1 in 20 eligible patients enroll in cancer clinical trials. Research suggests that a clinical trial system that enrolls patients at higher rates produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes. So, why do so few patients participate in clinical trials? The answers are complex, and both medical and non-medical. Medical impediments include being too sick to participate in a study, not meeting the requirements, or the trial is offered at a medical facility that is inconvenient for a patient to get to. Non-Medical barriers to participation in clinical trials include a treating physician who will not know about or consider a clinical trial as an option for their patient. There are also financial burdens and hidden costs for both the participant and provider.

If you are interested in a clinical trial, the best course of action is to approach your treating physician and discuss the pros and cons of a clinical trial for yourself or a loved one. It is essential to be aware that there are options and to work as a team with medical staff to help evaluate the pros and cons to each.

Following our podcast on clinical trials, Linnea Olson lost her life to lung cancer. However, as Thomas Lynch, MD said, “Linnea changed the world in a profound and lasting manner. Her courage and grace touched so many.”

Some helpful online resources are:

Finding a Clinical Trial | National Institutes of Health (NIH)

ClinicalTrials.gov

Get Healthy Stay Healthy – A Healthier World Begins With You

Understanding Palliative Care

Find an extra layer of support

I’m a sign language interpreter, specializing in health care. Recently, I interpreted an appointment between an oncologist and Grace (not her real name), a 73-year-old deaf woman recently diagnosed with lung cancer. Grace brought her hearing twin sister Luz to the appointment. The two petite women with big brown eyes shared a home, a calm demeanor and have always looked after one another. Grace’s doctor reviewed her pathology report slowly and in mostly laymen’s terms, which allowed me to interpret slowly for Grace and check in to make sure she understood what was being said. The doctor had on bright red reading glasses and looked directly at Grace when she spoke and paused often to make sure what she said was clear to both Grace and her sister. Sometimes when an interpreter is present, healthcare providers are inclined to speak to the interpreter or another hearing person rather than the patient. Grace’s doctor was direct, yet empathic and kind.

As the doctor described what was happening in Grace’s body, she pulled out a lined pad of paper and sketched rough outlines and locations of the tumors in her lungs. After she reviewed her recommendations for treatment, she said as part of the treatment plan she would like to refer Grace to the palliative care team at the hospital.

The sisters looked confused. Grace signed. “What is palliative care?

The doctor answered: “Palliative care is a specialty field of medicine, an extra layer of support. Essentially you would have a whole team of experts to provide extra care for you and your family while you are going through treatment for your cancer. Our palliative care team here includes doctors, nurses, social workers, nutritionists, physical therapists and chaplains.”

Luz looked worried. “A chaplain? Like a priest? What does this mean? Is she going to die soon? Interpreter, please don’t interpret that. Do they come to your house? I don’t understand?”

Like Grace and her sister Luz, many of us don’t know much about palliative care. Many of us hear palliative care and panic. We think that we, or our loved one, may be imminently dying. While palliative care certainly is provided to patients whose illnesses may be life threatening, palliative care is also offered as an option for patients to help reduce suffering and enhance quality of life, while undergoing treatment for serious illness.

Palliative care services are typically provided in a hospital setting, but can be arranged for in an outpatient setting, long term care facility or at home. Those working in palliative care specialize in supporting the whole patient. Palliative care providers can:

• Help navigate the complex health care system
• Discuss prognosis and treatment plan options and changes
• Offer resources for spiritual and emotional support
• Develop respite support for families or caregivers
• Offer resources to manage symptoms such as anxiety, depression, sleep problems, constipation, nausea, loss of appetite, shortness of breath and pain
• Arrange for nutritional counseling, physical therapy, occupational therapy, massage therapy or other integrative medicine services

Depending on the individual patient’s needs, she or he may need consistent, long-term support throughout their treatment. In other cases, the patient may use palliative care periodically or for a short term. If you, or a loved one have been recently diagnosed with lung cancer, you don’t have to wait until you are experiencing symptoms to ask for and receive palliative care.

Palliative care professionals are a resource to help you and your family live most optimally while on this journey with lung cancer. The lung cancer journey takes us on roads that we are not familiar with, and we are asked to make decisions that requires expertise and extra care. In addition to your provider, palliative care can offer you an extra layer of support during a most challenging time. Speak with your provider about how to set up palliative care and check with your insurance carrier about your palliative care options.

To learn more about palliative care or find a provider in your area, go to: getpalliativecare.org

Lung Cancer Is Not A Laughing Matter

You may or may not be a fan of Kathy Griffin’s acting or comedy, but she recently became a member of a growing group of never-smoking Americans who face a lung cancer diagnosis.

She recently tweeted “Yes, I have lung cancer, even though I’ve never smoked! The doctors are very optimistic as it is stage one and contained to my left lung. Hopefully no chemo or radiation after this and I should have normal function with my breathing.”

According to data from the CDC, non-smokers account for approximately 10% to 20% of lung cancers diagnosed in the United States, or roughly 20,000 to 40,000 lung cancers annually. *

Lung cancer in early stages, such a Kathy Griffin’s, is often found by accident. In early stages, lung cancer patients don’t often experience symptoms, or if they do experience symptoms such as shortness of breath, a cough, or chest pain which commonly occur, they are often misdiagnosed and confused with other illnesses. A cough, fatigue, or shortness of breath does not usually inspire a non-smoking person to rush to their physician to specifically discuss lung cancer. As a result, by the time lung cancer is considered diagnostically, it is often at a later stage. However, if you are aware of a family history of lung cancer, long term environmental exposure to radon, asbestos, open fires, frying foods, or have a history of other inflammatory lung disease, and some of the above symptoms are present, it could signal lung cancer and it’s important to feel empowered to have a straight forward conversation with your provider.

Currently the only method available for early-stage lung cancer detection is a low dose Computed Tomography (CT) scan. Medicare part B guidelines are often used by physicians to assess whether to order a screening for patients. Unfortunately, current guidelines are restrictive and do not consider non-smoking risk factors. They are:

• The patient is ages 55-77.
• The patient does not have signs or symptoms of lung cancer (asymptomatic).
• The patient is either a current smoker or quit smoking within the last 15 years.
• The patient has a tobacco smoking history of at least 30 “pack years” (an average of one pack [20 cigarettes] per day for 30 years).

As a person whose mother and biological grandmother both had lung cancer, I am aware that I am at increased risk of developing the disease even though I am a mother with teen age children and a non-smoker. When I recently noticed a constellation of whisper-like symptoms, I had a conversation with my physician and brought up the idea of having a low dose CT scan. Given my family history, at minimum, a baseline lung scan would be a good thing to have, I suggested. My provider said he agreed; however, he could not order the scan because I did not meet the criteria above. The HMO computer program was strictly set to those guidelines (or perhaps he was?). I believe a revision of current low dose CT scan screening guidelines to include non-smoking risk factors such as family history or environmental exposures is necessary and would save lives.

Fortunately, I was able to transfer to a more seasoned physician who understood what to by-pass in the computer system so he could order a baseline low dose CT scan for me. As a smoker or non-smoker it is important to know your risk factors for developing lung cancer, minimize exposure to known risks and not to give up if you are initially denied access to what may be a critical component of your care. Hopefully, in the near future we will have better early detection technologies as well as more inclusive policies around their use.

Learn Everything You Can About Biomarkers. It could save your life or your loved one.

About ten years ago, a friend told me that her mother had pancreatic cancer and that there was no hope for treatment for her. Her father is a physician and was not willing to simply sit back and accept that his wife would soon die. He and a colleague learned that his wife’s tumor was HER2 positive, a common biomarker for breast cancer. This was very early in the history of biomarker testing and targeted therapy. So, he reached out to doctors at the major hospitals in his area asking if they would do a trial to treat his wife, using one of the effective breast cancer drugs. He was turned down by several hospitals until he found one doctor, at a well-known hospital, who was willing to try this approach. Thankfully, this treatment was effective for her and she continues to experience a good life.

About six or seven years ago, I was visiting a dear friend who, shortly after my visit, was diagnosed with a neuroendocrine tumor. I spoke with her on the phone and said it was odd that I had recently gone to a talk where the speaker mentioned that neuroendocrine cells are often found in the lung. I told her that there was a growing area in cancer diagnosis and treatment that was based on biomarker testing and I urged her to talk with her doctors to be sure that testing was done.

What is biomarker testing and why is it important for cancer treatment?

Biomarker testing is a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) to find information about cancer. Biomarker testing can provide significant information about an individual’s tumor regarding unique patterns. Knowing what biomarkers are present helps to guide the medical team to make decisions about which drugs to choose. Selecting drug therapy that targets particular biomarkers, or tumor mutations can make a lifesaving difference.

Upstage Lung Cancer’s June, 2021 Backstage @ Upstage Podcast is called, “This Podcast Could Save Your Life.” That might sound a bit over the top, but I assure you, it isn’t! Our guest on this podcast is Jill Feldman, an amazing woman who lost her grandparents, her parents and an aunt to lung cancer, only to find herself at thirty-nine, with small children, diagnosed with lung cancer. Over the past twelve years she’s battled the disease. The treatment that saved, and extended her life, was a drug that directly targeted her tumor that had a particular biomarker, an EGFR mutation.

Also In the same podcast, Dr. Jo-Ellen Murphy, medical liaison to Foundation Medicine described how testing biomarkers can help doctors diagnose and monitor cancer during and after treatment. She described how Jill’s biomarker testing reveled that she had the EGFR gene. Knowing that, allowed for treatments that directly target that mutation with drugs called EGFR inhibitors. Because of comprehensive biomarker testing and subsequent treatment, Jill has been able to sustain hope.

Biomarker testing also can also be used to help choose and enlist in a clinical trial that offers a new cancer treatments. Some studies enroll individuals based on the biomarkers in their cancer, irrespective of where the cancer started growing in the body. What is clear is that in the major teaching hospitals throughout the country, more and more oncology teams know about and request biomarker testing to help determine what treatments are likely to help and those that could not. It is not an overstatement how important it is to discuss biomarkers, as a part of diagnosis and treatment planning with your medical staff.

Young People Get Lung Cancer, Really!

In an article by Anita T. Shafer on March 23, 2016, she asked, “Can a physically fit twenty-something who never smoked a cigarette get lethal lung cancer?” You may be surprised to know that the answer is “yes.” Unfortunately, doctors don’t know how or why. Upstage Lung Cancer continues for the seventh year to join forces with Addario Lung Cancer Medical Institute (ALCMI) and GO2 Foundation for Lung Cancer (GO2 Foundation). Proceeds from our concerts help to support research to help find answers to these questions.

Unraveling genetic reasons for lung cancer striking people under 40 is one of the research passions for Bonnie and Tony Addario. Bonnie’s own battle with lung cancer began when she was in her 50s, and she proceeded to form her foundation in 2006. A distraught mother contacted Bonnie, searching for help for her 21-year-old daughter, recently diagnosed with lung cancer. Jill Costello was a member of her college rowing team and had never smoked, yet she was diagnosed with stage 4 lung cancer. She died just one year later in June 2010, shortly after graduating from the University of California, Berkeley and leading its women’s rowing team to PAC-10 and NCAA championships.

Learning of Jill’s story, Bonnie assembled a network of the world’s top lung cancer researchers to ask “why?” It was clear that young people diagnosed with lung cancer had not been previously considered. “We did everything we could for Jill,” Addario recalls. “We literally reached out to everyone in the United States and around the world and nobody had any answers.”

Now, it’s fifteen years later.

Here are some statistics about young lung cancer:

• According to the American Cancer Society, the average age of people diagnosed with lung cancer in the United States is around 70.
• Between 1.2 to 6.2 percent of cases are found in people under age 40, but a small percentage adds up to large numbers. 3776-14,000 of younger people are diagnosed each year.
• Stage at diagnosis tends to be later, Stage 4, due to delayed consideration of lung cancer being a possible diagnosis in younger people.
• They tend to be never smokers.
• Despite being diagnosed at a later stage, younger people tend to fare better than older patients, although study results vary.
• Young adults with lung cancer are more likely to have an EGFR mutation. Targeted therapies are now available that address this mutation and can result in prolonged progression-free survival for many people.

The importance of this last point is that within the past decade, biomarker testing has grown in sensitivity and importance for treating cancer patients with targeted therapies. By knowing a patient’s mutation, a drug that directly targets that mutation can extend and save lives.

In Upstage Lung Cancer’s recent Backstage @ Upstage podcast Tony Addario, Founder and President of ALCMI discussed the Genomics of Young Lung Cancer, a global research project looking at possible biomarkers in younger patients. One of the lead researchers, Dr. Barbara Gitlitz said that nearly 84 percent of patients diagnosed with lung adenocarcinoma at an early age had genetic mutations that made them potential candidates for targeted therapies. These treatments weren’t available at the time of Jill Costello’s diagnosis.

Corey Wood was another guest on this podcast. She had been a college student, marathon runner, and successful mountain climber and was diagnosed with advanced stage lung cancer at 22, with an unusual symptom—a flash in her right eye. It turned out that this was caused by metastases of her lung cancer. Thankfully, Foundation One Testing showed that she had a rare biomarker, ROS1. Now there are more drugs targeting more mutations. The road hasn’t been easy for Corey, but she is an inspiration to all who live with lung cancer to not give up hope. Seven years after diagnosis, she lives her life to the fullest.

Upstage Lung Cancer supports a new research initiative from ALCMI that launches this year. Epidemiology of Young Lung Cancer (EoYLC), is a collaboration between ALCMI and GO2 Foundation, and seeks to pinpoint risk factors leading to a lung cancer diagnosis in young people. The study looks at environmental and childhood exposures and other potential risk factors that researchers hope will crack the code on lung cancer in those diagnosed under age 40.

“We’re in a race to figure out this disease so that the next generation doesn’t get it,” says Emily Bennett Taylor, a Stage IV lung cancer survivor diagnosed at age 28. Upstage Lung Cancer is proud to have supported the initial Genomics of Young Lung Cancer study for the past six years, and to continue its support of the EoYLC study.

Added thanks to Susan Smedley, National Manager, Community Fundraising and Endurance Events Go2, ALCMI

Lung Cancer Screening News

March 9, 2021, the United States Preventive Services Task Force (USPSTF) announced revisions to its existing lung cancer screening by lowering the screening age and including patients with a shorter smoking history.

The USPSTF update recommends annual lung cancer screening with low-dose computed tomography in individuals at high risk:

• 50-80 years old
• Have at least a 20-pack year smoking history
• Are currently smoking or quit within the past 15 years

This recommendation essentially doubles the number of individuals eligible for CT lung screening in the U.S. and will save lives. EARLY DETECTION is the best way to save lives and treat lung cancer early. If you, or someone you, know fit this criteria, don’t wait to be screened.

Expanding the screening guidelines is a critical step to improve survival rates and reach more of those Americans potentially at high risk for this disease,” said Harold Wimmer, President and CEO, American Lung Association. This recommendation will nearly double the number of individuals eligible for screening and has the potential to save significantly more lives than the current guidelines.

In addition, we know that people of color who are diagnosed with lung cancer face worse outcomes compared to white Americans because they are less likely to be diagnosed early, less likely to receive surgical treatment, and more likely to not receive any treatment. The expanded criteria will more than double the number of Black and Hispanic people eligible for screening and increase the number of American Indians and Alaskan Natives eligible by 2.7-fold. Close to twice as many women will also be eligible for screening under the revised guidelines.

Now, Medicare Part B (Medical Insurance) covers lung cancer screenings with Low Dose Computed Tomography (LDCT) once each year if you meet all of these conditions:

• You’re age 50-80 years old.
• You don’t have signs or symptoms of lung cancer (asymptomatic).
• You’re either a current smoker or have quit smoking within the last 15 years.
• You have a tobacco smoking history

Learn more about lung cancer screening and lung health at Saved By The Scan.

How the COVID-19 Legacy Could Change Cancer Care for the Better

Everyone has been impacted by the COVID-19 pandemic, but not everyone has been impacted equally or in the same ways. We’ve known since early in the pandemic that people with comorbidities such as chronic illness, heart disease, obesity, and cancer are more vulnerable to the virus. Not only that, but these populations are also more vulnerable to societal and financial disruptions caused by the pandemic.

According to a survey by the American Cancer Society Cancer Action Network, the spring, 2020 shutdown of elective procedures delayed healthcare services for 79% of patients in active treatment for cancer, with 17% reporting a delay in their cancer therapy specifically. Even though elective procedures have since resumed, cancer patients and their families are now burdened with the difficult math of weighing the risks of delaying treatment against the risks of possible exposure to COVID-19.

Another subset of cancer patients who have been and will be negatively impacted by the pandemic are those who don’t yet know they have cancer. One study found that cancer screenings for breast and colorectal cancer dropped by 89% and 85% through March and April of 2020, respectively. Missing the window for early diagnosis and intervention can have serious consequences that alter the course of the disease.

And yet, the news is not all bad. The pandemic forced physicians, surgeons, and patient advocacy organizations to adapt how they treat and support vulnerable populations, but the upshot is that we’ve come up with creative ways to meet the challenges of delivering care during a pandemic. Many of these adaptations will likely prove to stick around and change cancer care for the better long after COVID-19 recedes from our daily lives. Consider the following areas:

Telehealth

Many aspects of cancer treatment cannot be performed virtually, but oncology teams have identified opportunities along the patient journey where in-person visits can be swapped for a virtual appointment, such as routine symptom check-ups. Right now, even making a handful of appointments virtual can help reduce a cancer patient’s risk of exposure. In the future, telehealth will continue to make check-ups more accessible and convenient for cancer patients.

Remote Screening

Again, the majority of cancer screenings cannot be performed remotely. However, pre-pandemic, practitioners were not taking advantage of the few that are (such as stool samples for colorectal screening or visual inspections of abnormal moles via video call) as often as they could be. The pandemic has encouraged oncology teams to identify screenings that can be adapted to remote delivery and the patient populations that are prime candidates.

Compassionate Care

Undergoing cancer treatment is physically and emotionally grueling. Cancer patients rely on the support of family and friends in appointments, during treatments, and at home. But as hospitals and treatment centers restrict visitors, many patients are facing treatment alone. During the pandemic, physicians and care teams have had to step in and step up to provide emotional support and compassionate care to patients.

That can look like taking notes during a tough appointment, pausing more often to allow for mental processing, and making sure the patient understands any new information delivered. Many providers have also developed smartphone apps that provide easy access to resources and even allow patients to contact a nurse or advocate with questions.

Virtual Support Group

In addition to leaning on family and friends, many cancer patients also participate in cancer support groups. These groups are a safe space for cancer patients to discuss their experiences and emotions with other people who are also fighting cancer.

During the pandemic, in-person support groups could no longer safely meet, leaving cancer patients without this essential source of social support. To fill the gap, patient advocacy organizations stepped in to organize virtual support programs, such as virtual meetings or online forums. For example, Breast Cancer Now UK hosts a virtual support group for patients living with secondary breast cancer and the Cancer Support Community maintains an online community for cancer patients called MyLifeLine.

Even after the pandemic, there may be days or weeks when a cancer patient doesn’t feel up to attending an in-person meeting, and these online resources will be valuable outlets to connect with the cancer community.

Financial Assistance

The American Cancer Society’s survey found that nearly half of cancer patients experienced a loss of income that affected their ability to pay for or access care. To respond to this need, several U.S. patient advocacy organizations and biopharmaceutical companies launched financial assistance programs for cancer patients whose income was negatively impacted by COVID-19, allowing them to continue treatment.

As we look ahead to the post-pandemic future, we should reflect on how we can let go of the pre-pandemic practices that weren’t serving patients and replace them with the pandemic adaptations that have made the biggest difference in the patient experience. The impact of COVID-19 has been devastating for many, but we can make the legacy of how we responded to the challenges a positive one.

What other positive changes have resulted from adapting to COVID-19? Let us know what examples you’ve encountered or read about!

All in the Family

Janet McCarthy’s lung cancer was first detected eight years ago, serendipitously, on her final 5-year follow up MRI for her previously diagnosed breast cancer. Unfortunately, this was not Janet’s first close encounter with lung cancer. Her beloved husband, Jack, had his own battle with lung cancer and eventually succumbed from complications involving an inoperable tumor close to his heart. Sadly, the radiation treatment he received for lung cancer weakened his heart causing a multitude of health issues for 10-years following his initial diagnosis. After multiple hospitalizations due to poor lung function, he made the difficult decision to discontinue hospitalization and treatment. Instead, he chose hospice for support and comfort for the end of his life.

At the time of Jack’s initial diagnosis for lung cancer, Janet had just enrolled in college to be a radiology technician. Her husband’s diagnosis now meant she had to juggle raising two young children, caring for her husband, and completing school-related requirements. While carrying out these responsibilities, she was conscious of the real possibility she would become the sole provider for herself and children and therefore worked hard continuing her studies. In her words: I knew I needed a career, so I could keep a roof over my head.” With the help of her family, she was able to achieve her goals for a new career.

After her husband’s death, in just a few short years, she would have to face another overwhelming challenge, her own lung cancer diagnosis. Her children were now teenagers, and she agonized over how to share this news with them as they had already lost one parent to lung cancer. It felt important that she at least wait to tell them of her cancer until she knew the specifics of her diagnosis, treatment and prognosis. This burden along with the stress of being a single parent and sole provider for her immediate family weighed heavily on her. She ultimately relied on the help of her family to care for herself and her sons and get through this difficult time.

One of the biggest takeaways Janet has from her experience with lung cancer is understanding the impact of family and friends during this highly stressful time. Having support and care from family and friends during this trying period is truly invaluable for all cancer patients. At the same time, it is so important to recognize the stress and demands lung cancer can have on a family. The diagnosis alone is surely stressful, but with it comes the drain of financial resources and other valuable attributes such as time and employability. Janet worried about how she would survive financially while battling cancer and, in retrospect, thinks it’s important that more emphasis be given to this aspect of a lung cancer diagnosis. To that point, she makes it known that it’s beneficial to be aware of the social services different hospitals may provide.

It’s now been 8 year since Janet’s last lung cancer treatment, but she still has routine chest CT scans to monitor her lungs. As a CT tech, Janet knows how important these follow ups are for monitoring her lung health. With the arrival of COVID-19, she knows she must take special precautious given the fact her lungs are scarred from radiation. Truth be told, while she doesn’t report feeling “overwhelmed” by COVID-19, she admits part of her is “petrified.” To put herself in the best position possible, she has embarked on a health journey at this time, working with a nutritionist, undertaking a new fitness routine, and continuing to work with her pulmonologist.

Janet joined Upstage Lung Cancer’s efforts as a volunteer and board member in 2016 after meeting president and founder, Hildy Grossman at a women’s lung cancer forum. She attended an Upstage concert and knew she wanted to be a part of this organization. Janet manages the Upstage Lung Cancer (ULC) store at benefit concerts and looks forward to when there will be in-theater concerts again. In her dedication, she jumps in to provide event assistance where needed.

Anyone Can Get Lung Cancer: Here is One Thing You Can Do

The safety of our family is a top priority especially now with the threat of the coronavirus invading our world.  Staying home is suggested as a means of prevention. However, there may be another invisible killer lurking in what you think is the safety of your home. Years ago, the oncologist told my husband that he had lung cancer. We sat together listening to those words. We were numb. My husband, Joe, was not a smoker, and we led a healthy life style. Asking the doctor what could have caused this, his response was “We know radon causes lung cancer.” We had never tested our home and didn’t know that radon gas exposure is the leading cause of lung cancer in nonsmokers!

Joe lived six weeks after his diagnosis, and it was one month after his death that I discovered we were living with over 4 times the EPA action level of radon for 18 years. I spent the next year and half of my life educating all the legislators in Illinois about the danger of radioactive radon gas exposure. On August 16, 2007, the Illinois governor signed the Radon Awareness Act into law. August 16 would have been our 32^nd anniversary. 

I urge all of you to test your homes, schools, and workplaces for radon. If you do have a mitigation system installed, please perform a simple test each year to ensure the accurate performance of the system. 

You can go to Citizens for Radioactive Radon Reduction for more information on radon, subscribe to our free electronic magazine on lung cancer and radon, order a test kit, and join our crusade to save lives.

Holidays: The Best of Times, The Worst of Times

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.”

― Charles Dickens, A Tale of Two Cities ,1859

Could it be said any better? Dicken’s account was from 161 years ago, but it fits our current times to a tee. I think most people living today would vote the year 2020 as one the most dreadful in their lifetimes. All around us we’re faced with political discord, enhanced awareness of racism and economic disparity and a pandemic that grows more out of control. Everyone faces the stressful challenge of physical and emotional survival while combatting isolation each day.

Now comes the holiday season. Getting together with family and friends makes this season one that inspires love, connection and traditions. While it is a season that can inspire its own stress, many people look forward to this time of year as a time of renewal with those who mean the most to us. This year, chances are that our holiday celebrations won’t be in person. My own family and friends are spread out across the country, and some are in Europe, so I am used to not being together during the holidays. But this year there isn’t even a choice to go visit. As a lung cancer survivor, I wouldn’t risk the possibility of coming into contact with Covid-19.

As with the Dicken’s quote, I’ve found myself in the roller coaster of feeling okay one day and deeply sad the next day about all the pain and suffering in the world. So, being a determined person, I’ve searched for ways to enhance my sense of wellbeing. Some of my choices are studying French with my tutor, tackling a 1000-piece puzzle, searching for series to watch on Netflix, taking distanced walks with masks with a friend. The best of times during this year have been using Zoom to see my family and friends. There have even been occasions to get my whole family together, something that hasn’t happened for many years! And I would be remiss if I didn’t give credit to my wonderful puppy, Louise Tucker, who makes me laugh every single day.

I reached out to some friends to see how they were managing the holidays this year. Here are some of their thoughts:

• Stay in touch with people and look for classes online from your community to stay connected and to keep your mind busy.
• Try new recipes and call people every day.
• ind community group meetings or religious services
• Cancel traditionally large gatherings and write notes to each person to invite them for the holidays, 2021.
• This year is like no other, and it is too much to tolerate alone. Reach out to a therapist.
• Listen to or make music every day and find a way to laugh.

The consensus is that the best way to inoculate yourself emotionally during the pandemic, and especially during the holidays, is to try to connect with other people. You know the song, “People, people who need people, are the luckiest people in the world.”  It’s ok to reach out, actually important to reach out and acknowledge that we’re all in this together.

My friend Bonnie said, “In these troubled times it can be a bit depressing. BUT we must remember that we lose tomorrow reaching back for yesterday.” I agree. We can’t look back and think that what’s ahead for us is going to look normal. BUT, looking forward is an opportunity for working harder to mend differences between people. We’ll see what the near future holds as it unfolds. 

Finally, words that were told to me that have stayed with me since I was a young child are, “Take a long walk, read a good book and make a new friend.”

Joint Statement on Triage Considerations for Lung Cancer Patients

Upstage Lung Cancer is a member of LungCAN—a collective of lung cancer organizations all across the U.S.

As you know, we are in the midst of a crisis that threatens to impact our lung cancer community extremely hard. Many in our community have raised justified concerns about how they will be treated in the event of triage situations when there aren’t enough ventilators or other medical supplies for those who need them. Recently, leaked triage draft guidelines circulating on the internet have suggested that, in a triage situation, a diagnosis of “terminal” cancer would likely be a disqualifying factor for lifesaving access to care, even though we all know many survivors who have been given that diagnosis and are living and breathing among us many years later. Triage is an ugly reality, but we do not believe such crucial life and death decisions should be based solely on an advanced cancer diagnosis.

Our community is in great turmoil and distress. Our ability to change the situation is limited. Here’s what we can do.

LungCAN has developed the statement in the linked document. It lays out relevant lung cancer facts and implores triage officers to consider more than just the lung cancer diagnosis. To be clear, this letter does not request any ‘special favors’ for lung cancer patients, or that they are automatically moved to the front of the line; only that their diagnosis not be the sole reason they are excluded from lifesaving care. 

Joint Statement on COVID19 Triage of LC Patients

If you have concerns that you may need to advocate for yourself in the event of a shortage of medical supplies, there are a few things you can do:

1. Print a copy of this joint statement to present to a triage officer in the Emergency Room.
2. Carry a copy of your medical records with you, OR, even better, ask your doctor if they will write a very short (2-3 sentences) note that explains a little more what your cancer prognosis is. One possible factor used in triage is the ‘life-years’ that might be saved, so it might be helpful if you are stable and have a reasonably good prognosis.
3. Talk to your doctor now, before it’s a crisis, and explain your concerns, and thoughts and seek their advice.

This is an unprecedented time, with complex considerations, and so many unknowns. Will I get sick? Will I be seriously ill, or will it be a mild cold? What if there are equipment shortages? What if I’m recommended for ‘comfort care’ only? We encourage you to think through these issues, discuss them with trusted friends and family, and carefully consider your own preferences. Here are a few links that might be helpful as you consider these things.

• Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing – An excellent guide for medical care providers on complying with federal disability rights laws in developing treatment rationing plans and administering care in the event of a shortage of medical equipment, hospital beds, or health care personnel.
• COVID-19 and Anti-discrimination – An update from the GO2 Foundation for Lung Cancer that talks about what they are doing to address these community concerns.
• COVID-19 and Lung Cancer – Accurate, up-to-date information from LUNGevity on COVID-19 and how it affects those with lung cancer. Also includes a link to Breathe Easier – An Emergency Response Fund for COVID-19.
• Coronavirus and Lung Cancer – a great resource from the GO2 Foundation for Lung Cancer with helpful information for patients, providers, and advocates. 
• IASLC’s Guide to COVID-19 and Lung Cancer – An insightful collection of patient and member experiences with COVID-19
• On COVID-19, Ventilators, and Triage – blog post by Janet Freeman-Daily, Stage IV Lung Cancer Survivor and Passionate Advocate.
• The Conversation Project – a helpful resource for considering and talking about end of life care.

Know of a resource you think we should include?
Email kimberly@lungcan.org.