Tag Archive for: LCAM

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/

The Emotional Side of Cancer

The Emotional Side of Cancer from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the emotional side of cancer and how symptom and comfort management should be apart of your treatment from the beginning.

Communicating With Your Healthcare Team

Communicating With Your Healthcare Team from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the importance of communicating with your healthcare team. They agree in having a life planning conversation while you’re healthy is one of the best things you can do.

The Best of 2015

best of 2015


 

As 2015 comes to an end, we would like to take a moment to highlight a few of our most popular posts and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor, Tori Tomalia, Cindy Chmielewski, Dr. Michael Thompson, Edward Leigh, and Deana Hendrickson. Your efforts to Patient Empowerment Network are greatly appreciated.

best of people

From right to left: Edward Leigh, Tori Tomalia, Cindy Chmielewski, Marie Ennis-O’Connor, and Dr. Michael Thompson

PEN would also like to thank our sponsor AstraZeneca and our partner LUNGevity for their support in creating these posts.logos


 

Most Popular Posts of 2015

1.Virtual Patient Communities

Virtual patient communities offer support and information to cancer patients.

2. The Stigma of Lung Cancer

Tori Tomalia, a lung cancer patient explains the stigma of lung cancer, and that it doesn’t happen to only those who smoke.

3. Can Digital Wearables Help in Clinical Trials?

When applied to clinical trials, wearable technology is a potentially powerful research tool to gather clinical data in real-time and provides remote patient monitoring.

4. Clinical Trials 2.0: Reinventing Research For the Social Age

Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

5. Cindy Chmielewski Talks About Clinical Trials

Carol Preston talks to myeloma patient Cindy Chmielewski about her role in advocating for clinical trials. Cindy explains how her cancer journey took her to self-advocacy and advocating for others in her community through social media.

6. Why So Few Adults in Clinical Trials

Dr. Michael Thompson discusses with Carol Preston the reasons behind some patients apprehensiveness towards clinical trials.

7. Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

What can you do in support of Lung Cancer Awareness Month

8. Activating a Community of People Living With Lung Cancer

LVNG With is a community for people living with a lung cancer diagnosis. These people share their story and help inspire others like them.

9. How to Develop a Personal Medical Resume

Edward Leigh, Founder and Director of The Center for Healthcare Communication, shares his tips for creating a “medical résumé” to ensure great healthcare experiences.

10. Connecting to Cancer Patients Online

In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online.


 

Also, be sure to check out

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The Clinical Trial Toolkit is a resource to help you find clinical trials and financial assistance. You can view our Patients Helping Patients Blog for various aspects and perspectives of clinical trials. Also, don’t miss our Videos of patients, caregivers, and healthcare professionals!

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Connecting to Cancer Patients Online

Deana Hendrickson talks about how important it is to connect with other lung cancer patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:

Empowering Lung Cancer Patients Town Meeting from Patient Empowerment Network on Vimeo.

The Conversation: Supportive Care for Lung Cancer Patients

Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer patient, join in the discussion.

The participants discuss supportive vs. palliative care, explaining that palliative care is actually an additional layer of support for patients and families. Discussing palliative care at the time of diagnosis will help the patient learn about all options and will lead to the best quality of life for cancer patients.

The Conversation then turns to the healing vs. curing debate. Niki and Randy both agree that healing is individual and depends greatly on the patient’s situation and perspective.

The panel then discusses the patient experience during treatment for lung cancer, and the challenges involved. Discernible challenges for patients going through treatment, especially chemotherapy, are the fear of hair loss and the onset of nausea.

Niki then talks about cachexia: what it is, and how it can be treated. She further explains how cachexia can be a heavy burden for patients and caregivers, and references several treatment options such as medications, energy conservation therapy, and cognitive behavioral therapy.

The Conversation concludes with all participants agreeing on the importance of communication and shared decision-making with the medical team.

Watch and listen as these esteemed participants discuss topical issues in Supportive Care for Lung Cancer Patients.

The Conversation: Supportive Care for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

The Stigma of Lung Cancer

Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….