Lung Cancer Archives

Lung cancer is the second most common cancer in men and women. About 14% of all new cancers are lung cancers.

The two main types of lung cancer are non-small cell lung cancer and small cell lung cancer. The types are based on the way the cells look under a microscope. Non-small cell lung cancer is much more common than small cell lung cancer

More resources for Lung Cancer from Patient Empowerment Network.

Learning About Lung Cancer

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When it comes to lung cancer, you would be hard-pressed to find someone who didn’t know that it is linked to smoking. If you don’t want lung cancer, you don’t smoke. It’s as simple as that. Or, is it? Smoking is the leading cause of lung cancer, but it is not the only cause. Lung cancer is not a simple disease. Lung cancer is complex and misunderstood and underfunded, and it continues to be the leading cause of cancer death. With the number of lung cancer cases on the rise among people who have never smoked, it’s about time we really get to know lung cancer.

Lung Cancer Overview

Lung cancer is the result of abnormal cells growing out of control in the lungs. It is most often caused by smoking, but it can and does occur in people who have never smoked. People of any age can get lung cancer, but it is most likely to occur in adults in their 60s and 70s. Lung cancer is most successfully treated when found early, but because lungs are large, tumors can grow in them for a long time without being detected. Lung cancer can spread and metastasize to other parts of the body, and once lung cancer has spread, it becomes harder to treat. Cancer can spread through tissue, the lymph system, and blood. If the cancer spreads through tissue it moves to nearby areas. If the cancer spreads through the lymph system and the blood, it metastasizes, forming a tumor (metastatic tumor) in another part of the body. The metastatic tumor is the same type of cancer as the original tumor. So if lung cancer spreads to the liver, it is still lung cancer, not liver cancer, and needs to be treated as such. 

There are two main types of lung cancer: small cell and non-small cell. They are defined by the size of the cells when viewed under a microscope. The two types grow differently and are treated differently. Non-small cell lung cancer is the most common lung cancer, making up 85 percent of lung cancers. Small cell lung cancer makes up the other 15 percent, and it grows quickly. Usually by the time it is diagnosed, it has already spread to other areas of the body.

Non-Small Cell Lung Cancer

There are several types of non-small cell lung cancer, but the three that are most common are adenocarcinoma, squamous cell carcinoma, and large cell carcinoma. The most common in the United States is adenocarcinoma. This cancer starts in the cells that line the part of the lung called the alveoli. The alveoli are very small air sacs that are at the end of the respiratory system, where oxygen and carbon dioxide are exchanged in the bloodstream. The alveoli are balloon-shaped and are in clusters throughout the lungs. There are millions of them in the lungs. Squamous cell carcinoma (also called epidermoid carcinoma) makes up about 25 percent of all lung cancers. It forms in the thin, flat cells that line the inside of the lungs. Large cell carcinoma makes up about 10 percent of lung cancer cases, and it can form in any large cells in the lungs.

The less common types of non-small cell lung cancer are: pleomorphic, which is a rare malignant tumor; carcinoid tumor, a slow growing tumor usually found in the gastrointestinal system, but sometimes found in the lungs; salivary gland carcinoma, a rare cancer that forms in the salivary glands, mostly in older people; and unclassified carcinoma, a tumor that can’t be specified because of an insufficient sample or some other reason.

Non-small cell lung cancer has several stages. The stages are determined by the size of the tumor and whether or not the tumor has spread. Non-small cell lung cancer can also come back after it’s been treated. It can come back in the lungs, but can also recur in other parts of the body. The five-year survival rate for people with non-small cell lung cancer is usually between 11 and 17 percent. 

Small Cell Lung Cancer

The two types of small cell lung cancers are small cell carcinoma, called oat cell cancer, and combined small cell carcinoma. Small cell lung cancers usually grow quickly and are very likely to spread, most often to the liver, brain, bones, and adrenal glands. After diagnosis, most people live for up to one year. Less than seven percent survive five years.

Lung Cancer Risk Factors

Risk factors are things that increase your chances of getting cancer. Some risk factors are things you can control and others are not, but it is important to know your risk so you can help prevent the occurrence of cancer or know if you should be screened. The risk factors for lung cancer are:

Smoking

Most, but not all, cases of lung cancer are caused by cigarette smoking. It is the number one risk factor and when combined with other risk factors, it tends to magnify the risk. Using other tobacco products, such as cigars and pipes, also increases your risk. People who smoke tobacco products are about 15 to 30 times more likely to get lung cancer. Smoking occasionally or a few cigarettes a day also increases the risk. The risk increases the more years you smoke and the more cigarettes smoked each day. Using low-tar or low-nicotine cigarettes does not decrease the risk of lung cancer, but quitting smoking does. People who have quit smoking have a lower risk than if they had continued to smoke, but they still have an increased risk over those who never smoke.

Secondhand Smoke

Secondhand smoke can be just as dangerous as smoking when it comes to lung cancer risk. When you breathe secondhand smoke into your lungs it is just like you are smoking. While the doses are smaller, you are exposed to the same cancer-causing toxins as if you were smoking. 

Radon Gas and Other Substances

Radon is a radioactive, naturally-occurring, colorless, odorless and tasteless gas that causes approximately 20,000 cases of lung cancer each year. Radon often gets trapped in houses and can build up over time. There are other substances, often found in workplaces, that when exposed to them, also put people at risk for lung cancer, including asbestos, arsenic, diesel exhaust, tar and soot, nickel, beryllium, cadmium, and some silicas and chromiums. While these substances can cause lung cancer in those who have never smoked, the risk of lung cancer is higher for people who smoke in addition to being exposed to the substances. Exposure to radiation after an atomic bomb explosion also increases lung cancer risk.

Personal or Family History

People who have a personal or family history of lung cancer are at increased risk. If you have already had lung cancer you are at risk of developing another lung cancer. If you have a close family member with lung cancer, your risk of getting lung cancer is also increased, but that is largely because smoking tends to run in families. Even if you don’t smoke, but live in a home with a smoker, your risk is increased due to secondhand smoke exposure. There is also growing research that shows that genetics could play a role through inherited gene mutations (more about that later).

Radiation Therapy

Patients who have had radiation therapy in their chest to treat certain cancers, such as breast cancer and Hodgkin’s lymphoma, are at higher risk for lung cancer: the higher the dose, the higher the risk. Patients who have received radiation therapy, and who also smoke, have a higher risk than non-smokers. Imaging tests, such as CT scans, also expose patients to radiation and can increase lung cancer risk.

Air Pollution

People who live in areas with higher levels of air pollution have a higher risk of lung cancer. The quality of the air you breathe matters.

Diet

There is not a lot known about how diet affects lung cancer risk, but scientists do know that smokers who take beta-carotene supplements have an increased risk of cancer. Also, people exposed to arsenic in drinking water, often from private wells, have an increased risk of cancer.

HIV

People who have the human immunodeficiency virus (HIV) may have twice the risk of lung cancer than those without HIV. However, because people with HIV have higher smoking rates than people without HIV, it is hard to know whether the increased risk is from the HIV infection or the cigarette exposure.

Preventing Lung Cancer

It is possible to reduce your risk of lung cancer through prevention because so many of the risk factors for lung cancer are environmental or lifestyle-related. The best ways to reduce your lung cancer risk are:

No Smoking

Not smoking is the number one way to prevent lung cancer. People who already smoke can lower their risk by quitting smoking, and smokers who have been treated for lung cancer can reduce their risk of another lung cancer by quitting smoking. The amount your risk lowers when you quit smoking depends on how long and how much you smoked, and the number of years since you quit. The risk of lung cancer decreases 30 to 60 percent after someone has quit for ten years. However, the risk will never be as low as if you had never smoked in the first place.

Reduce Environmental and Workplace Exposure

Laws that help protect workers from exposure to lung cancer causing substances in the workplace can help reduce the risk of lung cancer. In addition, laws that prevent secondhand smoke help lower lung cancer risk. Reducing exposure to radon gas can also reduce the risk of lung cancer. Reducing radon in homes can be done by taking such measures as sealing basements.

There are other means of possibly preventing lung cancer, though there is no clear evidence that they will specifically decrease the occurrence of lung cancer. They include:

Diet

There are studies that show that people who eat large amounts of fruits and vegetables are less likely to get lung cancer than people who eat small quantities. However, studies also show that people who are inclined to eat a lot of fruits and vegetables are less likely to smoke, so it is not known whether the reduced cancer risk is from eating fruits and vegetables or from not smoking. 

Physical Activity

The same is true with physical activity. Studies show that more physically active people are less likely to get lung cancer. However, non-smokers tend to be more physically active than smokers, so it’s hard to tell whether the cancer risk is from the physical activity or from not smoking.

The Role of Genetics

Aside from the environmental risk factors, how can we account for the roughly 20 percent of people who die from lung cancer who are never smokers? Lung cancer in never smokers is on the rise in both the United States and Europe so researchers have started looking more closely at a genetic link to lung cancer. It’s estimated that about eight percent of lung cancers are hereditary. You can’t inherit cancer, but you can inherit a likelihood to get cancer based on the make up of your genes. Most lung cancers occur because of gene mutations that happen during a person’s lifetime, like when they are exposed to carcinogens, such as tobacco smoke or radiation. These are called somatic, and they can’t be passed down through families. However, there are hereditary mutations passed down through families called germline, and having these can increase your risk of getting cancer. Scientists have begun to identify the link between some of the mutations and lung cancer. There is a lot more to learn about the role of genetics in lung cancer, but researchers do know that young women never smokers are the most likely to have lung cancer caused by a genetic predisposition. They also know that people that get cancer as a result of a hereditary mutation are more likely to get non-small cell lung cancer.

Lung Cancer Screening

The best chances of treating many cancers come from early diagnosis and treatment. That is why it is important for people with the highest risk factors to be screened before they have symptoms. People who should be screened for lung cancer are between 55 and 80 years old, currently smoke or quit within the last 15 years, and have a 30 pack year history of smoking. A 30 pack year history means they smoked one pack a day for 30 years or two packs a day for 15 years. Often, by the time someone has lung cancer symptoms, the cancer has already spread. There are three types of screening tests for lung cancer: the low-dose spiral CT scan (LDCT), also called a low-dose helical CT scan, chest X-ray and, sputum cytology, which examines the mucus from the lungs.

Of the three screenings, only the LDCT has shown in a trial that it can decrease the risk of dying from lung cancer. The trial studied heavy smokers, aged 55-74 years, who had smoked at least one pack of cigarettes per day for 30 years or more, and heavy smokers who had quit smoking within the past 15 years. The study found that LDCT screenings were better than chest x-rays at detecting lung cancer in the early stages. The study also showed that LDCT screenings reduced the risk of dying from lung cancer. The study did not find that chest x-ray and sputum cytology screenings decreased the risk of dying from lung cancer. 

While screenings can save lives, there are some risks. It is important to remember that there is no guarantee that finding lung cancer will improve your health or help you live longer. Also, the tests can be wrong. Sometimes cancer that is there won’t be detected; other times screenings can lead to a false alarm that could result in an unnecessary, invasive procedure. Or, screenings can lead to overdiagnosis, which means that cancer cells that may never cause harm to your body and don’t require treatment, get detected. The LDCT scans also expose the patient to radiation. The risks of screening should be considered and discussed with your doctor. Hopefully, in the future there will be better screening methods for lung cancer. There are researchers looking into more effective, less invasive, and less expensive screenings, such as breath and saliva analysis.

Signs and Symptoms

Lung cancer does not always have symptoms and when it does, the symptoms are often very general and similar to things like a respiratory infection, that don’t seem serious. Often, by the time someone has gone to the doctor the cancer has already spread. When this happens, other symptoms beyond what are listed here could be present. However, any symptoms should be checked with your doctor. Lung cancer symptoms include:

  • A cough that doesn’t go away or worsens
  • Chest pain, discomfort
  • Frequent chest infections, such as bronchitis or pneumonia
  • Unexplained headaches
  • Trouble breathing
  • Wheezing
  • Hoarseness
  • Loss of appetite
  • Unexplained weight loss
  • Feeling very tired
  • Trouble swallowing
  • Swelling in the face or the veins in the neck
  • Bone pain
  • Coughing up blood

Lung Cancer Diagnosis

There are several test options used to diagnose lung cancer. Tests can include a physical exam and patient history, lab tests, chest x-ray, CT scan, examination of mucus from the lungs, and thoracentesis, which involves checking for cancer in fluid removed from the lungs.

After initial testing, if cancer is suspected, a biopsy is done. There are several possible types of biopsy, and each individual case will determine which type of biopsy is necessary. The biopsies range in level of invasiveness from insertion of a needle or a scope to surgical procedures and lymph node removal. There are also lab tests used to test for lung cancer. Some lab tests check sample tissue, blood, or body fluids for indications of cancer while others look for cancer markers, called antigens. The markers can sometimes help determine the type of cancer.

Staging Lung Cancer

When lung cancer is diagnosed, then the stage of cancer is determined. The stage is the size of the tumor, and whether the cancer has spread within the lung or in other parts of the body. Sometimes the staging is done during diagnosis, but if not, other tests are used to identify what stage the cancer is in, which helps determine a treatment method. 

Stages of Non-Small Cell Lung Cancer

Non-small cell lung cancer staging is very complex, and many of the stages have several subgroups with specific conditions based on the size of the tumor, whether or not the cancer has spread to the lymph nodes, whether the cancer has spread to the opposite side of the chest from the original tumor, whether or not there are additional tumors, and whether or not the cancer has spread to other parts of the body. A very simplified version of non-small cell lung cancer staging looks like this:

Stage I: The cancer has not spread to the lymph nodes.

Stage II: The cancer has spread to nearby lymph nodes.

Stage III: The cancer has spread to the lymph nodes and other parts of the surrounding area.

Stage IV: The cancer has spread to other parts of the body. 

Stages of Small Cell Lung Cancer

Small cell lung cancer has two stages:

Limited Stage Small Cell Lung Cancer: The cancer is in the lung but may have spread to the area between the lungs or to the lymph nodes above the collarbone. 

Extensive-Stage Small Cell Lung Cancer: – The cancer has spread beyond the lungs to other areas of the body.

Treatment

As with other cancers, lung cancer is often treated with a combination of procedures. There are ten types of standard treatment for non-small cell lung cancer. They include surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, laser therapy, photodynamic therapy (PDT), cryosurgery, electrocautery, and watchful waiting. Small-cell lung cancer is treated with 

surgery, chemotherapy, radiation therapy, immunotherapy, laser therapy and endoscopic stent placement. Several different treatment options may be used depending on the type and stage of the cancer. There are four types of surgery used to treat lung cancer. They range from removing a small section of the lung lobe to removing one whole lung. There are, of course, risks and side effects to treatment options that patients should discuss with their doctors, and patients should also be aware of the latest treatment options available. Researchers are always looking for new, more effective treatment options through things like studies and clinical trials.

Clinical Trials

If you are diagnosed with lung cancer, you might want to consider participating in a clinical trial. There are trials available all over the country. Clinical trials help determine whether new treatments may be better than the standard treatments. The trials help to advance the treatment of cancer. Each clinical trial will have its own requirements. There are usually trials available to patients in any stage of treatment. Information about available trials can be found on the National Cancer Institute website, cancer.gov.

Recovery and Survival

The chance of recovery from lung cancer depends on several factors, including the type of cancer, the stage the cancer is in, whether the cancer has spread, whether the patient has signs or symptoms, and the patient’s overall health. However, more than half of people with lung cancer die within a year of diagnosis. This is likely because only 16 percent of lung cancers are diagnosed at an early stage. The lung cancer five-year survival rate is 18.6 percent, which is much, much lower than other cancers, such as colorectal cancer, which has a five-year survival rate of 64.5 percent. The breast and prostate cancer survival rates are even higher.

Lung Cancer Stigma

There are some that believe that lung cancer survival rates are so much lower than other cancers because of a stigma attached to the disease. When it comes to lung cancer, people tend to assume that it is a self-inflicted disease. The stigma can affect patient care and funding which could lead to advances in research. Some patients have reported feeling guilt and shame for having lung cancer, and some said that they delayed seeing their doctor about their lung cancer symptoms because of the stigma attached. Other research has shown that when patients do seek treatment, some doctors were less likely to refer the patients for further treatment if they had lung cancer rather than another cancer. Funding is also negatively affected by the stigma. Despite lung cancer killing more people than breast, prostate and colon cancers combined, federal and private funding are both way behind what other cancers receive for research. Only six percent of the federal money spent on cancer research is spent on lung cancer.

There is evidence that the lung cancer stigma is starting to change, as are the cases of lung cancer. With 60 to 65 percent of all new lung cancer cases being diagnosed in people who have never smoked or are former smokers, lung cancer can no longer be considered a simply a smoker’s disease.

Sources

“What is Lung Cancer?” Centers for Disease Control and Prevention, September 18, 2019, https://www.cdc.gov/cancer/lung/basic_info/what-is-lung-cancer.htm. Accessed February 26, 2020.

“What are the Risk Factors for Lung Cancer?” Centers for Disease Control and Prevention, September 18, 2019, https://www.cdc.gov/cancer/lung/basic_info/risk_factors.htm. Accessed February 26, 2020.

“Lung Cancer—Patient Version” National Cancer Institute, https://www.cancer.gov/types/lung. Accessed February 26, 2020.

“Patient and Physician Guide: National Lung Screening Trial (NLST)” National Cancer Institute, https://www.cancer.gov/types/lung/research/nlststudyguidepatientsphysicians.pdf. Accessed February 26, 2020.

Eldridge, Lynne. “Function and Disorders of the Alveoli: Minute Structures of the Lung Vital to Respiration” Verywell Health, https://www.verywellhealth.com/what-are-alveoli-2249043. Accessed February 26, 2020.

“Lung Cancer” HealthLinkBC, December 19, 2018, https://www.healthlinkbc.ca/health-topics/hw183816. Accessed February 26, 2020.

Nall, Rachel. “What to Know About Lung Cancer” Medical News Today, November 16, 2018, https://www.medicalnewstoday.com/articles/323701#what-is-lung-cancer. Accessed February 26, 2020.

Eldridge, Lynne. “Relation, Heredity, and Other Genetic Factors for Lung Cancer: How Family History Affects Lung Cancer Risk” Verywell Health, updated September 23, 2019, https://www.verywellhealth.com/is-lung-cancer-inherited-2248975. Accessed February 26, 2020.

Kanwal, Madiha, Ding, Xiao-Ji, Cao, Yi. “Familial Risk for Lung Cancer (Review)” Spandidos Publications, December 20, 2016, https://www.spandidos-publications.com/10.3892/ol.2016.5518. Accessed February 26, 2020.

“Lung Cancer” American Lung Association, updated September 25, 2019, https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/resource-library/lung-cancer-fact-sheet.html. Accessed February 26, 2020.

“Types and Staging of Lung Cancer” Cancer Care, https://www.lungcancer.org/find_information/publications/163-lung_cancer_101/268-types_and_staging. Accessed February 26, 2020.

Eldridge, Lynne. “Understanding the Stigma of Lung Cancer” Verywell Health, December 1, 2019, https://www.verywellhealth.com/the-stigma-of-lung-cancer-2249236. Accessed February 26, 2020.

Hamann, Heidi A., Ostroff, Jamie S., Marks, Emily G., Gerber, David E., Schiller, Joan H., Craddock Lee, Simon J. “Stigma Among Patients with Lung Cancer: A Patient-Reported Measurement Model” National Center for Biotechnology Information, January 1, 2015, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3936675/. Accessed February 26, 2020.

PDQ® Screening and Prevention Editorial Board. PDQ Lung Cancer Prevention. Bethesda, MD: National Cancer Institute. Updated June 19, 2019. Available at: https://www.cancer.gov/types/lung/patient/lung-prevention-pdq. Accessed February 26, 2020.

PDQ® Screening and Prevention Editorial Board. PDQ Lung Cancer Screening. Bethesda, MD: National Cancer Institute. Updated May 10, 2019. Available at: https://www.cancer.gov/types/lung/patient/lung-screening-pdq. Accessed February 26, 2020.

PDQ® Adult Treatment Editorial Board. PDQ Non-Small Cell Lung Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated October 16, 2019. Available at: https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq. Accessed February 26, 2020.

PDQ® Adult Treatment Editorial Board. PDQ Small Cell Lung Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated October 16, 2019. Available at: https://www.cancer.gov/types/lung/patient/small-cell-lung-treatment-pdq. Accessed February 26, 2020.

Empowered! Podcast: Meet Andrea Conners

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Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

 

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How Can You Best Support A Friend With Cancer?

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What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

“Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbor who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”

[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

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“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerable media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Understanding Patient-Centered Care via Alliance for Patient Access

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The Alliance for Patient Access created a video to help you understand patient-centered care.

What You Need to Know About Lung Cancer Research

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What You Need to Know About Lung Cancer Research from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee reviews what patients need to know.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Trustworthy Resources to Help You Learn More About Lung Cancer

New and Improved Lung Cancer Treatment  Options

Diagnosed with Lung Cancer? Why You Should Seek A Second Opinion

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Transcript:

Dr. Wakelee:

So, there’s so much happening in lung cancer research now, it is hard to really narrow it down to one thing to be specifically excited about. Where we have made so much progress in particular is with target treatments, and also with immune therapy. So, when we think about the targeted treatments, it’s only been about 15 years since we first learned about drugs that would specifically target the EGFR gene mutations.

And when we found a tumor with an EGFR gene mutation, we then had a medication we could give that would work better than chemo. And now we have five EGFR drugs available in the US. And then we found out about this ALK gene mutation that happen in some tumors. Now we have five drugs that work there. And the with ROS1, that was found, and now we’ve got four drugs that work there that are approved.

And it seems that we keep learning about more and more mutations, so those are mutations called NTRK and BRAF. And with all of those, we now have drug treatments, so it’s been very, very rapid discovery of specific gene mutations and drugs that work for that. And I think we’re continuing to see new targets being identified and new drugs being found.

And also, when those drugs stop working, better understanding why and what we can do to help them work longer, or what we can give next. So, that’s a very active area of research that’s exciting. And then we have the immune therapy. So, the ones that are available so far are drugs that block either PD-1 or PD-L1, and that's one of the really important stop signals for the immune system.

And tumors can use that stop signal to block an immune reaction to a tumor. But if you block that stop signal then the immune system can attack the cancer. So, that's really important, these PD-1, PD-L1 drugs.

We also know about another stop signal called CTLA-4, and there’re drugs that block that as well. And now, where there’s a ton of research is in trying to work with other parts of the immune system, other either pro-immune or anti-immune signals, and changing those in a way where we can improve the ability of the immune system to find the cancer cells and attack the cancer cells.

So, there are many, many studies being done with drugs, and especially in combinations, trying to get that response against the cancer from the immune system to be even stronger. And that’s, I think, where we’re making the most exciting headway now.

New and Improved Lung Cancer Treatment Options

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New and Improved Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Are there new lung cancer treatment options that you should know about? Expert Dr. Heather Wakelee reviews the latest research. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

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Transcript:

Dr. Wakelee:

So, the treatment of lung cancer has been changing very, very quickly. We’ve had a lot of new options that have become available in the last few years, and there’re new ones coming along all the time. When I started treating lung cancer, which was a number of years ago, we were able to treat and help people.

But our only real option when the cancer was metastatic was chemotherapy. Chemotherapy is still an important part of treatment for many people, but now we have other options. So, starting about 15 years ago, people were able to identify that some tumors had specific genetic changes. We also call these molecular changes, or gene mutations, or just mutations in the tumor. They have a lot of different names.

But when we do find them, these are things like EGFR or ALK or ROS or BRAF or MET, we actually have different treatment options that only work for tumors that have those specific genetic changes, and don’t work in tumors that don’t have those. So, when we talk about genetic changes a lot of people think, “Oh, that’s something that I’ve inherited.”

These are not things that are inherited. This is not something that’s in the whole person. It’s just in the tumor. So, it’s a mutation that happened in the DNA of the cell, and that cell then became the cancer. And depending on what that mutation or mutations are, we still can have chemotherapy, and that can work.

But for specific ones, and specifically EGFR, ALK, ROS, BRAF, we know that there are pill drugs and oral medication that actually is gonna be better than chemo, at least for a period of time, if a cancer has that specific mutation.

So, it’s really, really important to figure that out. It’s not something a doctor can sort out just by looking at the patient or looking at the tumor under the microscope. We have to do special testing, looking at the tumor DNA.

And we now have ways of looking for those mutations, not just in the tumor tissue, but also sometimes with blood. So, we can draw a blood test and look for those as well when there’s a tumor that’s shedding the DNA. So, it’s really important to think about that. And we now have a whole host of medications that we can offer people when we the find these mutations that we didn’t used to have, even a few years ago.

And, actually, if you think back over the last five years, we’ve had new drugs approved, a few of them every year, for these specific gene mutation tumors, so that’s really, really exciting. The other thing that’s changed dramatically just in the last five years is what we call immune therapy.

So, when we think about the different types of treatment, chemotherapy works by poisoning DNA. And in order to make a new cell, you have to make new DNA. Tumors are doing that more than a lot of normal tissue, and so we’re able to give chemotherapy and specifically hurt tumors and not the rest of the person very much.

With the targeted treatments where we find a gene target and where there’s a gene mutation in a tumor, those are medications that specifically hit that altered gene, that altered protein made by the gene. And then they work really, really well. What immune therapy does is it actually changes the way your body’s own immune system interacts with the tumor. So, we have a lot of types of immune cells, but the ones that are involved in really fighting the cancer directly are called T cells.

And so, normally, a T cell would recognize something that’s foreign like an abnormal-looking cell that’s a cancer, and attack it. But we have a lot of different systems in our body that stop the T cells from recognizing normal tissue and attacking it.

And one of the best systems for that is something called PD-1 and PD-L1. And so, if you have a T cell and it sees a PD-L1 signal on tissue, it assumes that that tissue was normal tissue and it doesn’t attack. But if you can hide that PD-L1 signal, then if it’s a T cell, a part of the immune system comes in and doesn’t see the PD-L1, it doesn’t get the stop signal. It’s not told to not attack. So, it could attack the tumor better.

And I’m not describing it well because it’s so complicated. There are a lot of different factors that help a T cell know whether to attack or not to attack. But, again, one of these key stop signals is the PD-1, PD-L1 interaction. And so, scientists were able to develop medications that can block PD-1 or PD-L1. And when those medications are in the body, if a tumor is using that particular stop signal as a way to hide from the immune system, when you give the medication that blocks it then the tumor is no longer hiding.

And then the immune system, those T cells, can come in and attack. So, these immune treatments, and there are now a lot, and so these are drugs, like pembrolizumab, also called Keytruda; nivolumab, which also called Opdivo; durvalumab, which is called IMFINZI. And there are many, many others. Those medications have now been shown to really, really help to fight cancer, particularly when the tumor is using that PD-L1 signal. But they can also be combined with chemotherapy and then they work even if there’s not a lot of PD-L1 in the tumor. So, again, it’s a very complex story.

But where we’ve seen dramatic improvements in treatment is we have targeted treatments when the genes are – there are specific genes mutating in tumors. We have immune therapy, which worked for a lot of other people. And sometimes when there’s also gene mutation, but not always, we still have chemotherapy. And then there’s ongoing research with a lot of different medications. Many of them are focusing on better ways to get the immune system to work against cancers beyond what we can already do.

Being Empowered: The Benefits of Learning About Your Lung Cancer

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The Benefits of Learning About Your Lung Cancer from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee provides her advice. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

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Diagnosed with Lung Cancer? Why You Should Seek A Second Opinion

Transcript:

Dr. Wakelee:

So, as a patient living with lung cancer, you have many options today that you wouldn’t have had 5, 10, 15 years ago, which is wonderful.

Because things are changing so quickly, it’s very hard for physicians and other care providers to keep up with all of the latest information. It’s especially hard if you are seeing an oncologist who not only has to keep up with everything that’s happening in lung cancer, but also everything that’s happening in breast cancer, and colon cancer, and melanoma, and so many other diseases.

And so, while everybody does their best to know the latest and greatest in research, and all of the new drug approvals, sometime that’s just possible. So, as a patient, you wanna make sure that you, focused on your particular disease, are up-to-date on what you can possibly know about the best ways to treat your disease, so you can talk to your physician and make sure that he or she also knows about those, and is using that latest information to help you get the best possible care.

There’s also a lot of ongoing clinical trials. And being able to ask about those and know what may or may not make sense for you, is also a reasonable thing to be able to talk with your doctor about.

And sometimes that involves continuing your care with your doctor, but also getting another opinion, particularly at a research center where they might have access to more trials, new drugs, some of which might be better than what’s available, and some of which might not be. But without talking to people about that, you’re not gonna be able to know that.

And that’s why it’s really important to do what you can or your family can do to be educated and know what is going on in the field of lung cancer, so you can get the best possible care.

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

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Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion from Patient Empowerment Network on Vimeo.

Should you seek a second opinion? Lung cancer expert Dr. Heather Wakelee explains when to consider seeing a specialist. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, when facing a new diagnosis of lung cancer, one of the questions that often comes up is whether one should go get a second opinion or see a lung cancer specialist. And that is a question that obviously is gonna vary quite a bit by where a person is, where they’re getting seen, and what they’re facing.

I think a time that it’s really critical would be if someone has a Stage III lung cancer or told it might be Stage III. That’s a really good time to get a second opinion and make sure that the group that is taking care of you has had a multidisciplinary discussion. And when I say multidisciplinary, I mean, a thoracic surgeon, a radiation oncologist, and a medical oncologist have altogether looked at what’s going on with the particular case of that patient to decide up front what’s gonna be the best approach.

Because sometimes surgery is the right first approach. And sometimes it’s not. And sometimes radiation’s important, and sometimes it’s not.

So, it’s really critical to have a big team looking at what’s going on for Stage III. And if you’re in a hospital that really doesn’t see a lot of Stages III lung cancer that might be a good time to think about getting a second opinion outside of where you’re being treated.

I think, otherwise, if someone is newly diagnosed and we know the cancer is early stage where surgery might be involved, it’s good to check in that the surgeons who would be doing your operation are surgeons who know about lung cancer and have done lung cancer surgeries frequently. Sometimes in smaller hospitals there are surgeons who do both heart and lung surgery. And we know that the outcomes are not always quite as good in that setting.

Sometimes there’s no choice, and that’s okay. But if there is an opportunity to talk to a dedicated thoracic surgeon who’s used to doing lung cancer surgery, that’s another good time to get a second opinion. When we’re dealing with a more advanced stage of metastatic lung cancer, if someone is newly diagnosed and their tumor ends up having an unusual gene mutation or translocation.

And the molecular changes in lung cancer are really important to know about. And things like EGFR and ALK and RAS, where most medical oncologists will be familiar. But there’re others, like BRAF and RET and MET, and those can really change treatment outcomes as well, but not everybody who sees lots of different kinds of cancer as an oncologist will know everything there is to know about those.

So, if you have an unusual gene mutation, that’s another good time to get a second opinion with someone who’s a dedicated lung cancer expert. And usually those folks are at the larger academic medical centers, so oftentimes in cities, or affiliated with universities.

Another time is if someone does have a tumor with an EGFR, ALK, or one of the more common mutations, but the main drugs have stopped working, that’s often a time where someone who has specialized just in lung cancer might have some other options.

It’s also something to think through when someone’s newly diagnosed, if they know that their doctor has looked at the immune markers like PD-L1, and looked at the genetic changes in the tumor, and has a clear plan that’s gonna involve chemotherapy, or chemotherapy plus radiation, or chemotherapy plus immune therapy.

Then there might not be something that’s gonna be different in an academic center. But before you start treatment, if you’re still feeling okay, don’t have to start treatment tomorrow, and wanna know maybe that there’re clinical trial options, that’s another time to think about getting a second opinion. And a lot of academic centers will work to get people in very, very quickly if they knew they’ve just been diagnosed and they really need to get started on treatment right away.

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

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Diagnosed with Lung Cancer? An Expert Outlines Key Steps from Patient Empowerment Network on Vimeo.

Dr. Heather Wakelee outlines key steps that patients should consider taking following a lung cancer diagnosis. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

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Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

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Critical Questions to Ask Your Lung Cancer Doctor

Transcript:

Dr. Wakelee:

For a patient who is facing a new diagnosis of lung cancer, there are a lot of really important things to keep in mind. But really thinking about top three of them, the first one is that you wanna know what stage the cancer is. And when we talk about stage, we’re talking about how far the caner has spread. So, sometimes a cancer is found at Stage I when it’s still just a mass, a tumor in the lung.

Stage II means that it’s spread into some of the lymph nodes that are still in the lung. And for Stage I and II, for most people, we know that that means surgery is the treatment option. The next stage is Stage III, and that means that the cancer has started to spread into these lymph nodes.

And lymph nodes are just normal part of the body, but it’s a place cancer often will go. And if it goes into the lymph nodes in the center of the chest, called the mediastinum, then it becomes Stage III. And that changes the treatment. It’s usually more complicated. You wouldn’t normally just have surgery. There’s still sometimes surgery, and sometimes radiation, and almost always some sort of treatment like chemotherapy.

But it’s very complex. And usually we recommend that if you know it’s Stage III that you have a team that’s surgeons and radiation oncologists and medical oncologists to think about it. And then Stage IV means that’s it’s spread. So, knowing – meaning that it’s spread in a way where treatments are gonna involve chemotherapy or targeted treatment or immune therapy, and sometimes radiation, but not normally surgery.

And so, because it’s such a big difference in how things are treated based on stage, that’s the most important question to talk to your treating team about. The next most important question, assuming that it’s metastatic or Stage IV because that’s the most common way that we find lung cancer.

If it is metastatic or Stage IV then you wanna find out well, are there any markers, any tumor markers or cancer genetic changes, that are gonna help pick the treatment. And when I say that, I’m talking about gene changes in specific genes. The ones we think about a lot is something called EGFR, or epidermal growth factor receptor; or ALK, which is A-L-K; KRAS. There’s a whole list of them. But the most important are EGFR, ALK, and ROS, and BRAF.

And why that’s so critical is that if you have metastatic cancer and the tumor has one of those mutations then instead of chemotherapy, the best treatments are gonna be pill drugs, so basically, medications that you take my mouth. And we know that when the tumor has one of those specific mutations, the pill drugs are gonna be more likely to shrink the tumor and have that last longer. So, that’s why it’s so important to know about that. And then the other thing that we look at a lot is something called PD-L1, and that helps us determine about the immune therapy.

So, there’s been a lot on the news about this new class of treatments called immune therapy. And those can work for a lot of different people with a lot of different kinds of cancers. But they don’t always work. And this PD-L1 test can help us know a little bit more about when it might be the best choice, or when it might be something we can add to chemotherapy. And so, getting that information back is important, too.

And I’m gonna add a little bit extra to that. A lot of times that PD-L1 result will come back faster than the gene changes of the tumor, the molecular changes to the tumor. And it’s important to have the whole picture, so you wanna know not just what stage, not just the PD-L1, but also if there are any gene changes in the tumor, so that the best treatment choice can be talked about with the care team.

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts.

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Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts. from Patient Empowerment Network on Vimeo.

Some patients fear that clinical trials may be too experimental and risky. Dr. Martin Edelman outlines the clinical trial process and addresses myths surrounding trials. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.

The Truth About Managing Lung Cancer Treatment Side Effects

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The Truth About Managing Lung Cancer Treatment Side Effects from Patient Empowerment Network on Vimeo.

Are lung cancer treatment side effects avoidable? Dr. Martin Edelman reviews effective management strategies. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.

Patricia:

This next one really gets to the heart of the doctor-patient relationship. I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.

Trustworthy Resources to Help You Learn More About Lung Cancer

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Trustworthy Resources to Help You Learn More About Lung Cancer from Patient Empowerment Network on Vimeo.

Expert Dr. Martin Edelman shares credible resources to help lung cancer patients become informed and empowered.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s talk a little bit about health literacy. What would you suggest patients use for online resources? What are good resources?

Dr. Edelman:

So, there are some excellent resources. The International Association for the Study of Lung Cancer has resources for patients. The National Coalition of Comprehensive Cancer Center Network (NCCN) has resources. American Society of Clinical Oncology has resources. So, those or American Cancer Society. So, there are some really reliable sources out there. And there’s a great deal that’s very unreliable – people’s Facebook pages. I’ve seen this.

Patricia:

It’s a big place.

Dr. Edelman:

Everybody always – and I think it’s important for people to understand. There will be people who will get something and have a fantastic response. I’ve used anecdotes.

The anecdotes I’ve used are to illustrate the potential hope of benefit. They’re not exceptions to the rule anymore. They’re the good case scenarios. I could have just as many anecdotes of people who didn’t benefit and stuff. And I think it is important going into this – and that’s why we are reassessing patients constantly and getting repeat scans because we don’t necessarily know always – even if something’s 90 percent effective, it means 10 percent of the time it’s not.

And each patient – we’re getting better at individualizing and personalizing therapy, but we’re not perfect yet. And we probably never will be. So, there will always be anecdotes. I think what’s – as a friend of mine puts it – the plural of anecdotes is not data. When I say, “Well, chemoimmunotherapy works.” It’s not because I have anecdotes of that, though anecdotes illustrate the magnitude of benefit.

I have data that shows that the chemoimmunotherapy regimen was compared to chemotherapy and was clearly and unequivocally superior. When I give a statistic that 60 percent of patients, 65 percent, can benefit from those types of regimens. That’s based upon prospective randomized control trials.