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Tag: Lung cancer

  • Most Cancers Not Found Through Screenings

    Most Cancers Not Found Through Screenings

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    Dec. 15, 2022 — Just 14.1% of cancer cases in the United States are diagnosed through recommended screening tests, a new report says.

    Instead, most cancers are found when someone seeks medical attention for something else, according to the information posted by the nonprofit research organization NORC at the University of Chicago.

    “I was shocked that only 14% of cancers were detected by screening. I think, for many people, we talk so much about cancer screening that we imagine that that’s how all cancers are diagnosed. We talk about mammograms and colonoscopies all the time,” said Caroline Pearson, an author of the report and senior vice president at the organization, on CNN.

    Only breast, cervical, colorectal, and lung cancer have screenings recommended by the U.S. Preventive Services Task Force. Of those, here are the percentages of cancers found by screening: 

    • 61% of breast cancers 
    • 52% of cervical cancers 
    • 45% of colorectal cancers
    • 3% of lung cancers

    The report also shared information on prostate cancer, although screening for it isn’t widely recommended. The report suggests that screenings detect 77% of prostate cancers.

    The information hasn’t been published in a peer-reviewed journal. It is based on 2017 data. Pearson said the numbers of cancer screenings have fallen since then because of the COVID-19 pandemic.

    “I definitely think that the percent of cancers detected by screening would have been lower as a result of the pandemic. We know that people missed a tremendous number of recommended screenings, and we are seeing those cancers showing up at later stages in clinical settings,” Pearson said.

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  • Talking About Your Non-Small-Cell Lung Cancer Diagnosis

    Talking About Your Non-Small-Cell Lung Cancer Diagnosis

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    Finding out that you have non-small-cell lung cancer (NSCLC) is often overwhelming. And so is telling others about your diagnosis.

    You may worry how others will react. You may not want your friends and family to worry or to treat you differently, says Jacob Sands, MD, lung cancer specialist at Dana-Farber Cancer Institute and spokesperson for the American Lung Association.

    But talking about it is important. Your friends and family can offer the support you need, such as a shoulder to lean on, a ride to the doctor’s office, or extra pair of hands at home.

    So how do you let people know? There’s no one right way. But the following steps may help the conversation go easier for you and your loved ones.

    1. Decide Who You Want to Tell

    You don’t have to tell everyone right away. It may help to first write down everyone you want to notify and when you want to tell them. “For me, it was like the layers of an onion,” says Terri Conneran, who was diagnosed with NSCLC in 2017. “I wanted to tell my family first, then my closest friends, and so on.” Your list may include:

    • Spouse or partner. They’re often the first person you’ll want to tell. In many cases, your partner is your support system and caregiver when you undergo treatments.
    • Kids and grandkids. They can sense when something’s wrong, so it’s important to tell them the truth. “I was 13 when my dad passed of lung cancer,” says Jill Feldman, who was diagnosed with NSCLC in 2009. “From my experience, I knew that I had to be open and honest with my kids, too.”
    • Friends and family. They can also offer support and a sense of community.
    • Employers and co-workers. At some point, you may need time off or schedule changes. Keep in mind that federal law prohibits them from discriminating against lung cancer patients. You’ll need to talk with someone in your human resources department.

    2. Consider How You Want to Break the News

    When sharing your diagnosis in person, you’ll want to find a quiet, private place to speak openly. You may want to have a loved one, such as your spouse, with you for support.

    In many cases, you may not have the time, energy, or desire to talk to everyone one-on-one. You can also tell people:

    • In a group. Just make sure everyone’s there before you begin. “Midway through telling my close-knit Bible study group, someone walked in and derailed the conversation,” says Conneran.
    • Through a loved one. Ask that a trusted person tell others. Let them know what and how much you want to share.
    • By email, text, or a website. You can keep people updated through email or text. Or set up a website, such as CaringBridge. “I sent an email to the parents of my kids’ friends so there wouldn’t be any misinformation that would get back to them,” says Feldman. Include how you’d like people to respond; you may prefer not to get calls. Or say that you aren’t able to respond to everyone individually.

    3. Share Your Diagnosis

    It’s often hard telling others about your diagnosis, but the following steps can help. You may also want to consult your doctor, therapist, social worker, or child’s pediatrician for advice.

    • Make sure you understand your diagnosis well. People will ask questions about your cancer. You should be able to tell people if your cancer is curable and what the goals are for your treatment, says Sands.
    • Decide how much you want to share. You don’t have to tell everyone everything. Think about what information you want to disclose and how you’ll respond if someone brings up a touchy topic, says Win Boerckel, lung cancer program coordinator for CancerCare. You can say, “I know you’ll understand that I’m uncomfortable with that right now.”
    • Tailor your approach. You know your loved ones best, so you can anticipate how the talk may go. For Conneran, she knew that the conversation would go differently with each of her adult kids. “My son is an engineer with a technical mind. He wanted to know every detail about my disease and treatment plan,” she says. “But my daughter is more emotional. She wanted reassurance that I would be OK.”
    • Spell out what support you need. Most people want to lend a hand, but they don’t know where to start. Tell them what you need, such as someone to walk your dog or a friend you can call at any hour. You can also appoint a loved one to handle requests to help.
    • Have information and resources ready. Chances are you won’t be able to answer every question. Have a pen and paper ready so you can keep a list of questions that you want to ask your health care team. You can also refer them to a support group or website for more information, such as the Go2 Foundation for Lung Cancer, American Lung Association, and Lung Cancer Foundation of America.
    • Seek feedback. Check in to make sure that they understand what you’re saying and ask if they have any questions. “You want to make sure you’re on the same page,” says Boerckel.

    4. Be Ready for Any Reaction

    People react to cancer news in different ways, and their responses may catch you off guard. Some people will want to help right away, while others may need time.

    With lung cancer, there’s also stigma attached to the disease. “People will say, ‘did you smoke?’ or ‘I didn’t know you smoked,’” says Feldman. “It feels like shame and blame, and it’s stressful.” Have a response ready, such as, “It doesn’t matter how I got cancer; I need your support right now.”

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  • Inoperable Lung Cancer: Making Treatment Work for You

    Inoperable Lung Cancer: Making Treatment Work for You

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    By Larry Gershon, as told to Stephanie Watson 

    I was diagnosed with lung cancer by accident. In 2013, I went to urgent care with cold and asthma symptoms. When the doctor took an X-ray to make sure I didn’t have pneumonia, it showed a spot on my lung. After more scans, a surgical biopsy, and a brain MRI, I was diagnosed with stage IV lung cancer.

    I was in total disbelief. Then my oncologist said something that really uplifted me. She told me that even though my cancer wasn’t curable, people can live long and active lives while dealing with chronic illnesses. That would be our plan.

    There are new targeted therapies being approved every year to treat late-stage lung cancer. While most of these treatments have side effects, they are usually controllable and many patients can enjoy good results and lead pretty normal lives.

    Get Tested

    Hearing that you have inoperable lung cancer is tough. But hearing that nothing can be done to treat you is almost always untrue.

    It’s vitally important for every patient who is diagnosed with inoperable lung cancer to get comprehensive genomic testing. These tests tell your oncologist the best treatment option for you to have success.

    My genomic test found an EGFR mutation that causes my cancer to grow and progress. Once chemotherapy stopped working, I switched to a drug that targeted the EGFR mutation. I’ve been on the same targeted therapy for 5 years.

    Educate Yourself

    People who are educated about their disease and actively involved in their treatment do better because they are able to understand what’s going on. I think education is a huge part of dealing with a disease like lung cancer. Not knowing what to expect can lead to a lot more anxiety and stress.

    Google is not your best source for information.Learn about lung cancer from your doctor, a support group, or an organization like the Go2 Lung Cancer Foundation. There are also patient-founded lung cancer advocacy groups that support patients with specific genomic mutations. For example, there’s a group called the EGFR Resisters for the EGFR mutation I have.

    Other mutation types have their own support groups. These groups are in contact with the pharmaceutical companies and the doctors who are doing research to develop new treatments for each specific mutation.

    Care for Yourself

    Over the years, I’ve learned that people with late-stage lung cancer who get palliative care early have better results and tend to live longer.

    I volunteer with the GO2 Foundation’s Phone Buddy Program, where I help other lung cancer patients understand the treatment experience. One of the biggest misconceptions I hear is that palliative care only deals with end-of-life issues.

    It’s important for people with stage IV lung cancer to understand that palliative care can help you manage treatment side effects. I’ve used it to relieve side effects like nausea, diarrhea, and rash.

    Palliative care helps me focus and be smarter about what I eat and how I take care of myself, so I feel better overall. It can help patients and caregivers deal with anxiety and provide great resources when you need help. Palliative care focuses on the well-being of the patient and those who support them while your oncologist focuses on how to treat your cancer.

    Join a Support Group

    I also highly recommend finding a patient-focused support group. You’ll meet people who have walked in your shoes with whom you have a common experience, and people who can offer insight on how to deal with new experiences.

    A support group is a great source of comfort. You don’t get medical advice there because that’s not the purpose, but you can learn from someone else’s experience with things such as how to deal with treatment side effects or dealing with anxiety.

    I live in Palo Alto, CA. A friend made me aware of the GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). They host a lung cancer support group called “The Living Room” on the third Tuesday of every month. They invite thought leaders (doctors, researchers) in the lung cancer community to educate patients and answer their questions about lung cancer. That experience has been life-changing for me. The knowledge I’ve gained and the camaraderie I’ve found in this group is one of the most comforting experiences I’ve had since being diagnosed.

    Know When to Call

    Having cancer makes you hyper aware of what’s going on in your body. When you notice strange symptoms, you immediately wonder whether your cancer is getting worse. Is it progressing? Are things getting bad?

    Sometimes symptoms don’t have an explanation. But you should definitely make your oncologist aware of any new symptom that lasts for a week or more. Symptoms that persist may indicate that something is changing.

    Enroll in a Clinical Trial

    I’ve never participated in a clinical trial because I’m fortunate to have targeted therapies that have been effective in treating my type of lung cancer mutation. But I will not hesitate to participate in a clinical trial if I need a new, not yet approved treatment that can potentially offer hope to help control my lung cancer.

    Clinical trials have given us very effective treatments that are helping to keep many of us alive. There are clinical trials looking at all sorts of treatments. The treatments in a clinical trial can help improve overall survival and quality of life for people with all stages of lung cancer.

    Be Involved

    Bottom line, be involved in your treatment. Be active. Be interested in what’s going on. Ask your doctor questions and expect clear and specific answers.

    I think the worst possible situation for anyone with a stage IV cancer diagnosis is to be in the dark, to be unsure of what’s going on. It causes you to live with a horrible amount of anxiety and uncertainty.

    In my 9 years of living with lung cancer, I’ve learned a lot. The Go2 Foundation for Lung Cancer has educated me and made me an advocate for myself and others. Without them, I think my outcome would have been very different.

    Remember that no one is going to care about you more than you do. You are always your own best advocate.

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  • A Day in My Life With Inoperable Lung Cancer

    A Day in My Life With Inoperable Lung Cancer

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    By Amy McMillin, as told to Kendall Morgan

    When I found out I had lung cancer, I was working full time. That hasn’t changed. I am still working full time, and my family tries to stick with the same routine we had prior to my diagnosis, with some exceptions and adjustments, of course. 

    I have two kids. My oldest is away at college and my youngest can drive now, so I don’t have to do the morning school routine.  This is a huge help since fatigue is one of the biggest side effects of my treatment. Thankfully, also, my mother-in-law lives close by. She is such a huge help to our family.  She comes and deep cleans our home once a month and helps in any other way we may need.

    It’s important to have a support system, both at home and at work. I am so fortunate to work from home and have a great work support system.  When I was diagnosed, I went to my supervisor, and we discussed options that allow me some flexibility in my work schedule. I can rest at times when I am in pain or not feeling well. I find that a quick power nap at lunch can help me to get through the day.

    I have set up my home office so that I can stay on top of deadlines and priorities.  My memory is a bit of a struggle at times, and things take me longer than they used to. To stay on track, I use a large desktop calendar, to-do lists, and other organizational tools. These help me know where I left off the day before and what I need to do next. I’ve adapted.

    One of the things that was brand new to me with the cancer diagnosis was medication management.  The targeted medicine I take for my lung cancer type is very specific about when I need to take it. I have to take two pills twice a day. They also must be taken 12 hours apart.  On top of that, you can’t eat for 2 hours before and 1 hour after taking the pills.  It took some trial and error to land on a schedule that would work with our family’s schedule.

    I find that taking it at 5 a.m. and 5 p.m. allows me to have dinner with my family in the evenings at a time that works for everyone.  Along with the targeted medication, I take another medicine now to help with digestive issues from radiation, and that has to be taken at specific times also. 

    Prior to my diagnosis, I went to see my primary care doctor once a year or on the rare occasion I had a bad cold. These days, it feels as though I am at a doctor all the time. I see my local doctor once a month at least for checkups related to the medications I take. They help me to manage my side effects and any other issues I might be having.

    I also travel to [a specialty hospital] once every 3 months for scans. I get checkups with my oncology team and my cardiology team. I’ve had to learn to live with a long list of side effects, including fatigue, stomach issues, skin issues, sun sensitivity, bloating, and weight gain.  Each of these side effects requires a different doctor to manage them. Managing all the medicines and all the doctor appointments on top of my usual work schedule and home life is probably one of the biggest challenges in terms of day-to-day life.

    But even with all the side effects, medications, and doctor visits, I think it’s important for me mentally to maintain as much of a normal lifestyle as I possibly can. It’s good for me as well as my family.  I’m still young and have so much to contribute to my family and friends. I want to keep moving and grooving as long as I can. 

    Some days it’s wonderful and some days it’s very hard, but I find that having a solid support system in all aspects is what’s most important. Trust your team of doctors. Lean on your friends and family to help you because they want to and you need it. Beyond that, just keep putting one foot in front of another. Keep fighting.

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  • Treating Inoperable Lung Cancer: A Nurse’s Perspective

    Treating Inoperable Lung Cancer: A Nurse’s Perspective

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    By Alison Massey, as told to Susan Bernstein

    There is a perception that chemotherapy is like treatments from 20 or 30 years ago. They think it will have side effects that are not tolerable, but we have made significant advances in managing the toxicities that come with these cancer medications. People think chemo will make them sick, but that’s not the case. Each individual treatment regimen has its own side effect profile. If you look at the list of possible side effects, people can be overwhelmed. Most people will experience a side effect, but no one gets every possible side effect.

    Generally, people will be a little tired or have a dip in energy level for a few days. But between your treatments, we hope that you’ll be able to live your normal life. We have many people who continue to work between their treatments.

    Nausea is another common side effect, but we’ve made advances in how to manage nausea you may experience around your treatments as well. We can offer patients a range of anti-nausea medications. Some treatments do cause hair loss, and if that’s the case, we let you know that up front. It’s important to note that the vast majority do not cause hair loss, although some may cause hair thinning. We definitely have ways to help you manage these issues, including offering a prescription for wigs or other resources. With hair thinning, we can also check certain labs or get our dermatology colleagues involved to help you.

    Fatigue is the main thing you may experience with radiation. Radiation can cause inflammation in your body as it kills the cancer. It’s the inflammation that causes the side effects. Depending on what is being radiated, you may have pain. For example, if you are receiving lung radiation, your esophagus can be involved because the radiation may be close to that area of your body. If so, you may have pain with swallowing or difficulty swallowing. You may even feel like food gets stuck after you swallow it. People who are having radiation may not realize that it could affect swallowing food.

    Sometimes people will need radiation to a painful lesion. While receiving radiation at a particular spot for people with advanced lung cancer, you may have a flare-up of that pain. Ultimately, the hope is that pain will disappear. During this time, we can also treat you with pain medications or steroids like dexamethasone to minimize the inflammation that causes pain.

    Checkpoint inhibitors [immunotherapy medications for lung cancer] can have side effects, but they are different than chemo because they act on your immune system. These medications can overactivate your immune system, which leads to the side effects. Sometimes, we see patients develop dermatitis, which appears as a rash, or experience colitis that causes diarrhea, or pneumonitis of your lungs, which may cause shortness of breath or a cough. Checkpoint inhibitors may also cause arthritis or myositis, which is inflammation of your muscles. Sometimes, we can even see swelling of your joints. It’s important that if patients notice any new symptoms while taking a checkpoint inhibitor, they let us know about it so we can initiate treatment. The quicker you tell us about these side effects, the sooner we can treat and reverse them.

    Anxiety and depression are two things we deal with very often during cancer treatment. In my experience, people may feel lost when they are first diagnosed. But once you have found your oncologist and your whole cancer support team, and you know you have a plan of attack to treat your cancer, most people feel better. Many have a fear of cancer treatments and the potential impact of treatment on your quality of life. We let people know that they can still live their life and they should continue to do the things that they enjoy.

    Your mood and outlook may depend on where you are in your cancer treatment course or disease progression. Early on, most people are more functional and have less fatigue. Some people may still be able to work. Others may need to hang out at home for a few days after each treatment. Our goal is that you don’t stay in bed the whole time you’re being treated for cancer. Keep an active schedule as much as you can. Realize that you will be tired after your treatment and plan for those days. And don’t forget to ask for help if you need it!

    Sleeping well can also affect your mood and quality of life. A lot of our patients have insomnia. Often anxiety may be causing that insomnia. Your mind is racing, so you can’t sleep. Also, some of the meds you take for nausea or steroids for inflammation can rev you up and cause insomnia. And sometimes an annoying cough can disrupt your sleep.

    Some people with lung cancer may need to use supplemental oxygen. In my experience, people struggle with the idea of wearing oxygen because, like the association with hair loss, now people on the outside are able to see that they are sick. But from a medical perspective, it’s important to wear it if you need it.

    Loss of sexual function is something we can see in both men and women. In my experience, men are more vocal about this, so speak up, ladies, if you have any concerns! Erectile dysfunction can affect men during cancer treatment. Women may experience vaginal dryness or pain during intercourse. If that happens and you let us know, we can refer you to a sexual health doctor. Treatments can also affect women’s menstrual cycles. If you’re someone who could get pregnant, you should be careful to use contraception while you’re being treated for cancer.

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  • Inoperable Lung Cancer: Innovations That Are Changing the Outlook

    Inoperable Lung Cancer: Innovations That Are Changing the Outlook

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    By David Tom Cooke, MD, as told to Susan Bernstein

    The term is “inoperable lung cancer.” It means that the risk of surgery to remove the lung cancer exceeds the benefits of the surgery for a patient. However, it is hard to tell if someone is “inoperable.”

    Age is one factor that can slightly increase your risk, but it’s not necessarily prohibitive. I’ve operated on 90-year-olds. Other health problems you have can be a factor, such as impaired lung function. If we remove a lung tumor in a person who already has minimal lung function due to severe COPD or emphysema, that can make surgery risky, for example. There is a growing population of people who fit that description. To be determined that your lung cancer is “inoperable,” you really need to be seen by a thoracic surgeon.

    The gold standard for treatment of early-stage, inoperable lung cancer is something we call SBRT, or stereotactic body radiation therapy. It’s high-dose, focused radiation. SBRT is used to try to destroy the tumor. It’s very targeted, and we use special imaging to be very precise with this treatment, typically CT scans. It’s different from traditional, high-dose radiation therapy to shrink or kill tumors. SBRT has potential to cure lung cancer, but it’s not known if it has the same cure rate for patients as surgery. We usually perform one or two SBRT treatments, and then you have routine follow-up for 5 years.

    There are some newer experiments going on in this area. It’s thought that radiation can cause the release of antigens, small proteins that activate your immune system. There are studies to see if the combination of SBRT with immunotherapy drugs called checkpoint inhibitors can increase the likelihood of killing and eliminating lung tumors. Checkpoint inhibitors activate one’s own immune system — to remove the “checkpoints” that slow down the immune system — to fight cancer.

    Researchers are studying not only the effects of this combination therapy, but how long patients would have to take these drugs. Right now, there have been phase I studies to look at the safety of this SBRT/checkpoint inhibitor combination, as well as clinical trials underway to look at the results of the combination therapy.

    Another treatment used in early stages is the use of [local scopes to treat the tumor], such as navigational bronchoscopy. For this treatment, we take a camera attached to the end of a catheter and insert it into the patient’s trachea, or windpipe. Then, either using high-tech guidance tools or combined with a CT scan, we aim the catheter toward the tumor. This is also being done with robotic technology combined with a CT scan to guide the catheter to the tumor, followed by microwaves to kill the tumor, or to locally inject chemotherapy directly into the tumor. There are animal studies being done now to test this type of technique.

    There have been recent advances in surgery, so people whose lung cancer was once considered inoperable may become operable. One key factor here is robotic surgery. We can make smaller incisions for less stress on the body. Robotic surgery also allows us to take less lung tissue out to remove your tumor.

    There are other new technologies on the horizon for lung cancer treatment. One may be a combination of robotic surgical technology with 3D imaging and heads-up displays in the operating room to carefully guide the surgery. I always use this comparison: If your child is going to the prom, do you want them going in a 1992 Ford Taurus or a 2022 Toyota Camry with all the latest safety innovations, such as blind spot assist, airbags on all sides, and a backup camera? We can use these technologies to greatly increase safety during surgery.

    There is another point that is important for the big picture of lung cancer treatment. According to the American Lung Association’s 2021 “State of Lung Cancer” report, over 20% of patients diagnosed with lung cancer did not receive any treatment whatsoever. In addition, Black patients with lung cancer are 23% less likely to receive surgical treatment and 9% less likely to receive any treatment compared with white patients.

    Before you have any treatment for lung cancer, it is best to discuss it with a team of doctors, including a thoracic surgeon, because we have so many different options to fight your disease.

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