Tag Archive for: lung cancer awareness month

November 2022 Notable News

Looking at things from a different point of view can often lead to insights to advance the treatment of cancer. Studying the genes of a unique cancer patient is helping scientists learn about harnessing the immune system to fight cancer. A single blood test is being refined by scientists to help doctors with early cancer detection. Doctors also address common myths about lung cancer to raise awareness in the month of November.

Unique Patient Offers New Hope for Beating Cancer

A unique cancer patient who has survived a dozen tumors could hold the key to beating the disease, according to scientists’ reports independent.co.uk/ . This patient has developed different types of cancers after getting mutations in a gene inherited from both parents. The patients’ immune system fights these cancerous tumors and scientists want to learn how the patients’ immune system does this. If they can learn how, this could help with earlier cancer diagnosis and development of new immunotherapy drugs to fight cancer. Throughout this patient’s life, from birth to age 40, the patient has developed 12 tumors. Five of those tumors were malignant. By mapping the patient’s genome, scientists found mutations in MAD1L1 gene. It had the wrong number of chromosomes. This gene is important for cell division and proliferation. This patient had five forms of aggressive cancers that disappeared easily. This patient has constant tumors, causing the immune response to be elevated to fight the cancers. Scientists have learned that the immune system can fight against cells with the wrong number of chromosomes. Find more information here.

A Blood Test That Screens for Multiple Cancers at Once Promises to Boost Early Detection

This year, President Joe Biden identified developing MCED’s (multicancer early detection) tests as a priority for the Cancer Moonshot, a US$1.8 billion federal effort to reduce the cancer death rate and improve the quality of life of cancer survivors and those living with cancer reports theconversation.com/us . Tumors shed DNA in blood when the cells die. MCED tests look for trace tumor DNA, these tests are being used to help guide treatments for advanced stage cancers. Later stages of cancer have larger amounts of tumor DNA, testing for this is called liquid biopsy. The MCED test tried to detect cancer in earlier stages when the tumor cell DNA is less which is harder to detect. There are also abnormal DNA shed as part of the aging process and this can be confused for cancer DNA. The new tests focus on molecular barcodes in which DNA methylation is specific to cancer cells. There is one biotech company that launched the first MCED test in the U.S. It tests for 50 types of cancer, but it is not covered by insurance. Doctors are trying to work out appropriate circumstances to use a MCED test and what follow up testing would be required. Find more information here.

Lung Cancer Awareness Month: Myths about Lung Cancer Everyone Needs to Stop Believing

November marks Lung Cancer Awareness Month- a disease many of us think we know the key causes and symptoms of. However, there are still some misconceptions around lung cancer– it’s not necessarily just a ‘smoker’s disease’ reports independent.co.uk. Lung cancer is more common in people ages 6-70 with a history of smoking for many years. However, lung cancer can be diagnosed in people as young as 20 years old. In 10% of patients diagnosed with lung cancer, there is no history of smoking. Causes of lung cancer in non-smokers can be genetic or exposure to harmful substances like asbestos. Some of the damage to the lungs can be reversed after smoking cessation unless the patient is diagnosed with emphysema. Lung cancer patients have a 65% survival rate if the cancer has not spread and is localized. CT scans for smokers over the age of 50 can help find small tumors that can be removed, this increases chances of survival. Men and women are both at risk for getting lung cancer, men’s risk is only slightly higher. People should pay attention to symptoms such as a cough for 2-3 weeks, recurring chest infections, shortness of breath, and painful breathing. If you have any of those symptoms, see your doctor. Find more information here.

The Case of Lung Cancer

Let’s face it. What we know about lung cancer is grim. It is the leading cause of cancer deaths in the United States for both men and women, and more than half of those with lung cancer die within one year of being diagnosed. The five year survival rate is only 18.6 percent, so that means that out of 100 people diagnosed, 82 of them don’t make it. The data alone is enough to be discouraging, but couple that with the stigma attached to the disease, and the people who have it, and the public perception about lung cancer becomes extremely negative.

The stigma attached to lung cancer comes mainly from the connection the disease has to smoking. For more almost seventy years now, we’ve known that lung cancer is a risk factor of smoking. Anti-smoking and tobacco campaigns have been successful in making sure the public understands that if we don’t want to get cancer, we shouldn’t smoke or use tobacco products. The good news is that as smoking rates have decreased, so have lung cancer rates. The bad news is that as lung cancer became known as a “smoker’s disease”, people began to believe that if you got lung cancer, you were to blame. As a result, lung cancer patients may feel that they receive less sympathy from their healthcare providers and others, and feel compelled to hide their condition causing them to suffer from guilt, anxiety, depression and isolation. Patients suffering from a stigmatized disease also may avoid or delay seeking treatment or a second opinion, and may receive lower quality of care. In addition, the clinical guidelines, diagnostics, and treatments for lung cancer aren’t as comprehensive as they are for the cancers without stigmas attached. Further, there is less research, data, and funding about how to increase lung cancer survival rates.

Often, it is the survivors of a disease, or family members who have lost a loved one, who form the advocacy groups, drive the fundraising efforts, and are the proponents for research. That hasn’t seemed to be the case for lung cancer for a couple of reasons. First, the stigma attached to lung cancer prevents survivors from speaking up because of the shame and guilt associated with having the disease. The stigma also appears to carry over to family members and others, such as celebrities and community leaders, who don’t feel comfortable advocating for those who are perceived to have caused their own illness. Secondly, lung cancer has a low survival rate, and, therefore, fewer survivors to lead the charge.

In order for the fight against lung cancer to have some of the same advances that less stigmatized cancers have, the public awareness needs to go beyond the labeling of lung cancer as a “smoker’s disease.” People who have never smoked, and those who quit many years ago, get lung cancer. Lung cancer can also be genetic. There are many risk factors for lung cancer in addition to smoking. They include: being exposed to secondhand smoke, asbestos, arsenic, chromium, beryllium, nickel, soot, or tar; exposure to radiation therapy to the breast or chest, radon, and imaging tests such as CT scans; living where there is air pollution; and a family history of lung cancer. While we don’t want to diminish the risk of smoking and the benefits of giving it up, it is important to note that not all smokers get lung cancer, and not all people with lung cancer are smokers.

Despite the stigma and negative public perception, there are organizations such as the American Lung Association and Patient Empowerment Network who are working to reduce the stigma of lung cancer and raise awareness about the disease. The PEN Living Well with Lung Cancer series is a live-streamed webinar program where patients, and their family members and caregivers, have the opportunity to interact with experts in the lung cancer field. The programs include panel discussions and a question and answer session. The program is recorded and made available through our website. PEN also provides town meetings and conference coverage with topics pertinent to those affected by lung cancer. Through our Notable News posts on our blog, we strive to provide patients with information about the latest advancements in all cancers, including lung cancer. This month you’ll discover that there is good news about lung cancer, thanks to new findings about sugar and cancer’s attraction to it. You can find that information and other updates here.

It is important for lung cancer patients, and all cancer patients, to maintain focus on the good news and to have hope. Every 2.5 minutes, someone in the US is told that they have lung cancer. Wouldn’t it be wonderful if they could also be told that there is hope?


Sources:

https://seer.cancer.gov/statfacts/html/lungb.html

https://www.lung.org/assets/documents/research/addressing-the-stigma-of-lung-cancer.pdf

https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq#section/all

https://scienceblog.cancerresearchuk.org/2018/11/16/science-surgery-why-do-never-smokers-get-lung-cancer/

Notable News: November 2018

November is National Lung Cancer Awareness Month, and if ever there were a cancer that needed an awareness month, it’s lung cancer. Sometimes referred to as the invisible cancer, lung cancer is a disease caught up in a smoke cloud of misconceptions, and those misconceptions can prevent patients from early detection, treatment, and support. Several of the myths and misconceptions about lung cancer are addressed and dispelled in a recent article at fredhutch.org. One of the main myths is that you only need to worry about lung cancer if you are or ever were a smoker. That’s simply not true. In fact, people who have never smoked can get lung cancer, and it can be a genetic disease. Other myths include the belief that there are no early detection screening processes and that there has been no progress in lung cancer research. While it’s true that other cancers seem to have more screening options and better prognosis, advancements are being made in lung cancer. Organizations such as Patient Empowerment Network are making progress in building awareness and reducing the stigmas about lung cancer. See the rest of the myths and misconceptions and how they are dispelled here.

There is nothing sweet about having lung cancer, but there may be a sugary clue that could lead to earlier detection, reports forbes.com. Researchers have discovered that early-stage, non-small cell lung cancer (NSCLC) tumors and precancerous lesions produce high levels of a molecule that they use to consume sugar to help fuel their growth. The molecule, called SGLT2, could be used to detect early stage NSCLC. Researchers also found that a diabetes drug, which blocks SGLT2, also prevented tumor progression in mice, which shows promise for possible future treatment of NSCLC. Further studies of SGLT2 could hinder the development of malignant NSCLC, and more information about this hopeful development can be found here.

Another hopeful lung cancer development comes in the form of a hot needle, reports dailymail.co.uk. The treatment, called radio frequency ablation, is being used to diagnose and treat difficult-to-reach tumors. In addition to being able to destroy the tumor by heating it up with radio frequency energy, doctors are able to use the needle to remove part of the tumor for biopsy. The needle works in place of attempting to access the tumors through invasive surgery. The hot-needle treatment is considered safe for repeated use, and a report showed that half of the patients treated with the hot needle survived at least five years. More information about this hot new treatment can be found here.

We would be remiss if we didn’t note that November is also National Family Caregiver’s Month. There are approximately 43.5 million unpaid caregivers in the United States and they are a critical component of a cancer patient’s journey. It is important for caregivers to make sure they are practicing self-care as well, and there are a number of resources available to them to help ensure caregivers have the information they need to care for their loved ones and themselves. The PEN Path to Patient Empowerment guide provides resources for care partners, including links to the Family Caregiver Alliance website and the American Cancer Society Caregiver Resource Guide. Chock full of information for caregivers about caregivers and the patients they care for, these resources are a must have for any caregiver and can be found here and here.

Oh, and November is also the month where we give thanks. Happy Thanksgiving from the PEN Family to your Family. We are thankful for you!

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Words of Advice from a Lung Cancer Survivor

When I was diagnosed with lung cancer, it was a shock. It was like a fist to the stomach- and it turned my life and my loved ones lives- upside down.

My world changed immediately and drastically. But I had to learn quickly not to let fear, shock, anger or distress keep me from advocating for myself.

I learned very quickly that you have to be your own champion.

So, how does a lung cancer survivor best advocate for themselves?

  • Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.
  • Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
  • Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.
  • You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
  • Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.
  • Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, the National Institutes of Health (NIH), etc. Make sure that you can differentiate between opinion and vetted study results. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor knows what all of the latest treatments are.
  • Start a binder or a file where you keep important test results and copies of your scans. List questions for your doctor so you don’t forget when you get into his or her office.
  • Take along a friend or family member to doctor visits. Two sets of ears are better than just one, especially if you receive some shocking news during the appointment.
  • Join support communities (in-person or online or both). It helps to spend time with others who “have been there, done that.”
  • One of the best organizations that I have associated with since my diagnosis is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
  • Spend time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
  • Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The misconceptions and stigma that are associated with lung cancer can make people look down on you or discount the importance of your disease and your fight.

lung cancer survivor

Donna is now a stage 4 lung cancer survivor.

Keep your head up. Whether or not you have a smoking history, everyone deserves quality treatment and compassion. No one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Set aside any feelings of shame or guilt or if you never smoked, the question “why me”.   Become a champion for yourself.  And remember, there is hope.

My story is a story of hope.

Yours can be too!