The White Ribbon Project
Heidi’s Lung Cancer Story & Grassroots Project
Here at The Patient Story, we love stories of patients who’ve found purpose after their own cancer diagnosis, especially in grassroots efforts to help amplify the voices of countless others.
This is Heidi’s story. After her own stage 3A non-small cell lung cancer diagnosis at 55 years old, she experienced dealing with stigma and shame, so she decided to combat that with what’s now known as The White Ribbon Project.
- Name: Heidi N.
- Diagnosis (DX)
- Age at DX: 55 years old
- Concurrent chemotherapy & radiation
- 3 cycles of cisplatin and pemetrexed
- 21 day cycles
- IMRT (intensity-modulated radiation therapy)
- Concurrent chemotherapy & radiation
- Heidi’s Lung Cancer Story
- Tell us about yourself
- How did you know something was wrong
- What were the diagnostic procedures you underwent
- How did you and your loved ones process the diagnosis
- How did you break the news to others
- Chemoradiation & Immunotherapy
- Learning more about treatment options
- What did you learn from the genetic testing of your tumor
- What was your treatment path
- Describe the chemoradiation you underwent
- Describe the immunotherapy
- Navigating Life with Lung Cancer
- Finding a cancer community
- Fighting stigmas with lung cancer
- The impact of stigmas on research and treatments
- The White Ribbon Project
- The genesis of the White Ribbon Project
- Social media attention of the White Ribbon Project
- International presence!
- Tell us more about the White Ribbon Project mission
- What is your next goal
- Encouraging others to share their lung cancer stories
- Importance of other partnerships
- The “modern faces of lung cancer”
- The importance of people from all walks sharing their stories
- Non-Small Cell Lung Cancer Stories
Heidi’s Lung Cancer Story
Tell us about yourself
I have been a fitness trainer for 17 years and I hold a master of science degree in health education. I have been a lifetime health enthusiast.
My husband Pierre is a primary care physician and he has an MPH with a specialization in health education.
Having careers in prevention, we were blindsided by my Stage 3A non-small cell lung cancer diagnosis.
How did you know something was wrong
In October of 2018, at 55 years old, as part of an evaluation of a mildly suspicious ovarian cyst, my OB/GYN physician had me complete a CT scan of my chest, abdomen, and pelvis.
The ovary turned out to be benign, but the chest CT revealed an incidental lung mass along with enlarged mediastinal lymph nodes.
What were the diagnostic procedures you underwent
A subsequent biopsy, staging process, and evaluation by two different tumor boards confirmed that I had inoperable stage IIIA non-small cell lung cancer.
Shocking, as I did not have any respiratory symptoms.
The initial message I got from the pulmonologist and available survival curves was that “I should get my affairs in order” and that my prognosis was quite grim.
How did you and your loved ones process the diagnosis
Despite a more positive message, the diagnosis of lung cancer remained a complete shock to my husband and me. Neither of us thought I was at any real risk of developing lung cancer.
How did you break the news to others
I was quite reluctant to tell anyone other than close family and friends about my diagnosis. Having careers in preventive health, and having lived a clean life of good nutrition, fitness, and no smoking history, I still felt the stigma of my diagnosis.
Chemoradiation & Immunotherapy
Learning more about treatment options
After meeting my oncologist, he gave me much more hope, indicating that the treatment of lung cancer had greatly evolved over the past several years, and one treatment had just been approved by the FDA a month before my diagnosis.
What did you learn from the genetic testing of your tumor
While the genetic analysis of my tumor did not make me a candidate for targeted therapies, I was a candidate for immunotherapy after completing a course of chemoradiation.
What was your treatment path
After the diagnosis on October 24, 2018, I met with an oncologist on October 31, 2018 who told me there was hope for curative intent with a new immunotherapy, durvalumab.
If I did not show progression through a CT scan after completion of chemoradiation, I would be a candidate for this immunotherapy.
After a second opinion with an oncologist specializing in lung cancer on November 5, this treatment plan was confirmed.
Since I was considered to be inoperable, and did not have a targetable mutation, this was my only treatment option. I was told with chemoradiation alone, I would have a 90% chance of having a recurrence within 6 months.
If I took the immunotherapy, there was a chance of cure. It was not a difficult decision to make.
Describe the chemoradiation you underwent
Beginning November 14, I endured three cycles of chemotherapy, Cisplatin and Pemetrexed, given 21 days apart. I also underwent 30 radiation treatments (IMRT) concurrently with the chemotherapy.
After the 7th radiation treatment, my radiation oncologist showed me there was already significant reduction. By the end of chemoradiation, on December 26, there was very little left of the tumor, and it was characterized as scar tissue. Lymph nodes were obliterated.
Describe the immunotherapy
Since chemoradiation was successful, I became a candidate for durvalumab and started every other week infusions on January 17. I had 26 infusions of durvalumab, taking a year to complete.
I officially ended treatment on January 8, 2020. Subsequent scans through January 2021 continue to show that there is no evidence of disease.
I do not assume that I am “cured.” I do not know if that will ever be the case. I live my best life from scan to scan, which has been a challenge during the pandemic.
As scan day approaches, I do feel scanxiety, which is just a euphemism for anticipatory terror.
Navigating Life with Lung Cancer
Finding a cancer community
The cancer community was not easy to find. I asked my oncologist about support for me and Pierre, and we were told there really wasn’t anything in terms of finding others we might fit in with.
We could not be given names of other survivors as that would violate HIPAA laws. When sitting in the radiation oncologist’s waiting room, we saw a lot of literature and information about support groups for other cancers, but nothing for lung cancer. We felt alone until 10 months into treatment.
After 10 months of feeling alone, by chance I met another lung cancer survivor much younger than me: an athlete living with Stage 4 disease.
She introduced me to five other stage 4 survivors with similar stories. They had no known risk factors.
I became convinced that I had a responsibility to share my story and do what I could to increase awareness about the true nature of this disease.
Fighting stigmas with lung cancer
When I was first diagnosed, I felt traumatized due to the prognosis and the complete shock that I was diagnosed with lung cancer. As a public health educator, our training was this disease was primarily linked to a history of heavy cigarette smoking.
Being a health and fitness professional, I asked myself why do I feel defensive, having to explain that anyone with lungs could get lung cancer, and that I did not have a history of smoking. Many people did not believe me, and questioned my integrity.
This hurt a lot, professionally and personally, and I remained quiet about my diagnosis to people outside of close family and friends. Today, I understand our lack of knowledge and empathy for lung cancer is directly related to public health education and messaging.
The impact of stigmas on research and treatments
Such a terrible stigma has hindered research funding. It’s completely unjustified considering the tobacco industry was indicted for manipulating marketing and increasing levels of nicotine, making cigarette smoking highly addictive to young people when they are at an age of experimenting and exploring things they might not have as adults.
Not an easy addiction to break, so yes, many people cannot stop smoking. Does that mean they deserve to have a hideous and cruel disease and death sentence?
Having worked with the HIV/AIDS community in the early 1990’s, I sat with dying patients, many of whom were discarded by their families because of the stigma associated with the diagnosis. How sad, horrible, and unfair. Did people with HIV/AIDS deserve this alienation, dreadful suffering and death sentence?
I thought about how the community of survivors, caregivers, celebrities, athletes, and physicians humanized the disease by standing up and telling their stories. They received empathy and compassion. They had nothing to be ashamed of.
Without shame, there is no stigma. They showed the lives and families impacted behind the staggering statistics and demanded to be cared for through fierce advocacy. Funding increased dramatically and research accelerated.
Today, HIV/AIDS is no longer a death sentence. It is a chronic, manageable disease, and people are living with a high quality of life.
Historically, this is what it has taken. It was the same for the breast cancer community. Women felt stigmatized, mutilated, and embarrassed.
The brave women who stood up over the years and brought about awareness through fierce advocacy, with the medical community supporting them, have achieved great success and high survival rates.
After I thought about this, and having been disrespected and demoralized by the cancer centers that were supposed to be caring for me, I thought a way to tackle the stigma I was feeling was to stand up and scream through my white ribbon door hanger.
It would send the message that I was not ashamed to say I have lung cancer.
The White Ribbon Project
The genesis of the White Ribbon Project
In the spring of 2020, as a result of Zoom calls amid the pandemic, I partnered with my survivor friends and we attempted to get some local hospitals to get more active in promoting Lung Cancer Awareness Month, which is November, just as they do for Breast Cancer Awareness Month, which is October.
We were largely ignored or dismissed with what we felt were patronizing and humiliating responses.
Since the cancer centers and hospitals were not going to promote lung cancer awareness month, out of frustration I asked my husband, Pierre, if he could make me a large white ribbon. It is the symbol for lung cancer awareness and I wanted to hang it on my own front door.
No permission required or red tape to deal with, I could take control and spread awareness literally from my front door. As he had just taken up woodworking, he was able to make me a two-foot-long wooden white ribbon.
I could open the door to conversations and start educating others about lung cancer facts. I could try to increase general awareness about lung cancer, and let other survivors know that they are not alone.
Suddenly, I felt I had some control and power back in my life. It feels good not to hide, not to be invisible and perpetuate the myths.
I can think of far worse things people can do in their lives than smoking cigarettes. Does this addiction truly warrant horrid pain and suffering to approximately 235,000 people every year, and death to approximately 132,000 of them?
No shame, no stigma. Stand up and educate. It is up to us, the lung cancer community – survivors, caregivers, physicians, researchers, cancer centers, advocacy organizations to stand together and break the stigma. We are worth it!
Social media attention of the White Ribbon Project
I subsequently put a photo of it on a private Facebook page for lung cancer survivors in Colorado. Almost immediately, people were asking us to make them for them.
We have been happy to do that, and the demand grew quickly.
We now have White Ribbons across the country, in Canada, one in the Philippines, one in Germany, and one on the way to the Netherlands. We have made more than 500 of them. We have not been accepting any money for the ribbon or the shipping.
Tell us more about the White Ribbon Project mission
The White Ribbon Project ( The WRP) promotes awareness about lung cancer by changing public perception of the disease. Anyone with lungs can get lung cancer.
We want people to know that the White Ribbon Project ribbon is a symbol of lung cancer awareness and lets them know that they are not alone. They are loved, and there is a huge community of lung cancer survivors, caregivers, and advocates there for them.
Each ribbon is handmade by a survivor or someone who loves a survivor.
A lot of time and effort goes into crafting each ribbon and our hope is that when a survivor receives their ribbon, they know that it was made for them with love and care and they are worth it.
We have been inspired by many longstanding survivors and advocates, especially Chris Draft, former NFL football player, whose wife died of lung cancer in 2011. He has been one of the strongest supporters of the lung cancer community along with his foundation.
What is your next goal
Unify the disparate lung cancer communities by forming The WRP as a means to increase awareness. We plan to do this by sharing the white ribbons and the WRP logo with lung cancer advocacy groups, health care institutions, and other supporters.
We also aim to increase public recognition of the white ribbon as a lung cancer symbol. The White Ribbon Project is unbranded.
Encouraging others to share their lung cancer stories
Since the inception of the project, we continue to connect with people who were reluctant to share their diagnosis but are now excited to have a white ribbon and let others know they have lung cancer.
They have been posing for pictures in front of their cancer centers or their homes and posting them on social media.
Thanks to many strong survivor-advocates, several comprehensive cancer centers and organizations are now displaying these ribbons along with awareness and educational materials from LUNGevity, the GO2 Foundation for Lung Cancer, and the IASLC (International Association for the Study of Lung Cancer).
The white ribbons are currently on display at 24 NCI-Comprehensive Cancer Centers, 25 VA hospitals, 17 community cancer centers, and seven lung cancer advocacy organizations.
Importance of other partnerships
Yes, partnerships with caregivers, other advocacy groups, pharma, genomic testing companies, lung cancer clinicians, primary care physicians, scientists, and cancer treatment centers is crucial.
We have already gotten great responses from these stakeholders and many have accepted and are displaying the ribbons we have made for them. One primary care physician is taking the ribbon to base camp at Mt. Everest in April!
The Chris Draft Foundation, LUNGevity, The GO2 Foundation, The City of Hope Comprehensive Cancer Center, have all been very supportive of our efforts. Many other cancer centers, physicians, researchers, and social workers have all been very supportive of our efforts.
The “modern faces of lung cancer”
We are hopeful this is a step towards cracking the unfair stigma that has plagued this disease for decades. All these survivors are stepping out and showing the modern faces of lung cancer. This is giving hope to so many.
We see ourselves as the “modern faces of lung cancer.” We are unified. Whether we have a smoking history or not, a targeted mutation or not, we show that anyone with lungs can get lung cancer and that research matters!
Messages and images of hope instead of frightening stereotypes are starting conversations across the country.
The importance of people from all walks sharing their stories
It is important to share all stories of lung cancer. The world needs to understand that anyone with lungs can get lung cancer.
Any age, gender, race, religion, those with smoking histories, those who never smoked, those who have targetable mutations, those without mutations, those on immunotherapy, any stage of diagnosis.
Unification is necessary to have a loud voice that advocates for the same thing, and that we all have different unique stories that need to be heard.
No one deserves any disease, lung cancer included.
Learn more about the White Ribbon Project by following on social media.
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Non-Small Cell Lung Cancer Stories
Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B
Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms: No apparent symptoms
Treatment: Lobectomy of the left lung
Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B
Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)
Terri C., Non-Small Cell, KRAS+, Stage 3A
Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)
Heidi N., Non-Small Cell, Stage 3A
Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)
Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Numbness in face, left arm and leg
Treatment: Targeted radiation, targeted therapy (Alectinib)
Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)
Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)
Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)
Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)
Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)
Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)