My life changed forever on October 24, 2018 at the age of 55. This is the day I was diagnosed with stage 3A lung cancer.
I felt a familiar twinge on my lower left side and thought, given my age and my history of ovarian cysts, I should get this checked by my gynecologist. After an examination and ultrasound, my doctor told me I had a 6-centimeter cyst on my left ovary. To be thorough, he ordered a test to assess the likelihood of ovarian cancer, which came back one point over a normal reading. This did not sit well with my doctor, so he consulted with his gynecologic oncologist colleagues. They suggested he order a CT scan of my chest, abdomen, and pelvis to rule out anything worrisome and to continue to monitor the cyst or remove the ovary if necessary.
The result of my CT scan was shocking. The ovary appeared normal in appearance, but a 2.5 cm mass was found in the upper lobe of my left lung along with two mediastinal “plump” lymph nodes in two different stations. What followed was a PET scan that lit up the mass and the lymph nodes, then an EBUS biopsy of the lymph nodes.
Diagnosis: stage 3A adenocarcinoma of the lung.
My thoughts raced. How could I have advanced stage lung cancer? Working out 7 days a week—cardio, strength, core training, and clean eating—has been, and continues to be, a huge part of my life and who I am. I hike trails at significant inclines in Colorado on the weekends. I am a health educator and fitness trainer. I teach fitness classes to healthcare professionals and provide one-on-one training to athletes and people striving for good health. I live a life of prevention, and I have never smoked. My husband of 33 years is a primary care physician who focuses on prevention. I knew to take care of myself by taking preventative measures against heart disease, cervical cancer, breast cancer, and colon cancer, but nothing about lung cancer.
I have learned a lot in the past year. Lung cancer is the most lethal cancer in our country and the rest of in the world, and it is the least funded of all the cancers. There are no early assessments/detection programs for people who are not smokers. Would I have been better off if I smoked? I at least would have qualified for an annual low dose CT scan that could have caught my cancer at an earlier stage when my prognosis could have been significantly better.
I received my diagnosis and the prognosis over the phone from a pulmonologist that I had no history.
I was told to get my affairs in order. After meeting with my oncologist and having a second opinion at the University of Colorado Anschutz, the treatment plan and potential outcome offered much more hope. This is why I think getting a second opinion is very important, especially the second opinion of a lung cancer specialist. There is so much changing every day, and it is just too much information for a general oncologist to keep up with.
After I was diagnosed, I received basic biomarker testing, which did not demonstrate any driver mutations. Because I had multi-station disease, I was considered inoperable and was offered one treatment option: chemoradiation followed by a year of every other week immunotherapy infusions of Durvalumab, if I could tolerate them.
I was told to be prepared for a debilitating treatment process. Chemoradiation was supposed to make me incredibly weak and tired. I was also expecting to get esophagitis and was introduced to the palliative care team who could help with the severe pain and difficulties swallowing and eating that I would experience. I was prepared for the worst, but, surprisingly, none of these things happened. The unexpected change in my life after diagnosis is that I am able to stay independent with all of the energy I had prior to diagnosis. I continue to work, eat and drink normally, and keep up with my fitness routine: daily cardio for one hour, and weight and core training three times per week. Some people around me cannot believe I have advanced stage lung cancer, as they see no difference in me. My life as I knew it did not change physically.
Emotionally, however, this diagnosis has taken a toll on me and my family. I did not expect to be put on the defensive as soon as someone found out about my diagnosis. I was never greeted with "I'm so sorry”; the first comment to me is always "I didn't know you are/were a smoker." This stigma hurts me deeply and has caused me more emotional damage than anything else.
My latest scan showed I have no evidence of active disease. Despite this, I live in a frequent state of anxiety. This disease is insidious, and I know it will eventually come back. I live each day in the moment as best I can, but when scan day nears, my anxiety peaks. I get a good scan result, I plan lots of fun things and trips—primarily visits to see my children, and exploring places on my bucket list, as I am currently still healthy enough to travel, and it helps me live my best life. Learning to live to the fullest in 3 month intervals has become our routine and has actually brought us a lot of joyful experiences.
The fact that I am currently doing well gives me hope. According to the pulmonologist who diagnosed me, I was not supposed to be here by now. I am very grateful for the current advancements in treatments for advanced stage lung cancer, but we must do better. I am determined to show my face, tell my story, and spread awareness that anyone with lungs can get lung cancer.
Heidi Nafman-Onda is 56 years old and has been married to her high school sweetheart, Pierre, for 33 years. They live in Greenwood Village, Colorado, a suburb about 20 minutes southeast of Denver. They have 3 adult children ages 30, 26, and 23, who live across the country. Heidi holds a master's degree in Health Education and has been a fitness trainer for 16 years; she primarily trains people one on one to help them achieve their fitness goals and foster healthy lifestyles. Overall, the family has lived a clean, healthy lifestyle, and are all never smokers. Her diagnosis came as a complete shock to them all.
Keep going strong Heidi! Thank you for sharing your story!
Thank you June! I am hoping awareness is spread through telling my story and that it can give people hope.
Hi Heidi. My story is much like yours. Fitness has always been a big part of my life. Never smoked. At the age of 64, with no symptoms, I learned, by chance, that I had lung cancer - Staged 3A. It came as a complete shock to me and my family. I had my lower left lobe removed, chemo and radiation. Through it all I felt good and continued to work. Most people didn’t even know what I was going through. A year later I continue to feel good with daily visits to the gym. I’ve now retired and am enjoying my life. Like you, I get scans every 3 months. We have done a lot of traveling in our lives and that continues with the goal of at least one trip each 3 months. Keep up the good fight!
You are such a strong fighter, especially post surgery! Perhaps we are getting through this because we did come into this shocking diagnosis so strong and healthy. I guess we have been training for this all our lives. Keep fighting and enjoying life!
I agree with you Paul, healthy living always pays off.
Thank you for sharing. I needed the encouragement.
I am in a similar situation like yours.
I love and enjoye healthy liVing. It is the only way I know how to be. I have been working out for the past 22 years, been doing Pilates.
I am 42, I just got diagnosed in January 2020.
RET mutation, high PD-L1. Got a few options, some doctors seem hopeful about using immunotherapy. Others think I should do immuno and chemo right away.
Decided to start Immunotherapy, if that doesn't work, I will add chemo
Hi Heidi. I hope you get this, but I just wanted to say how much I appreciate your post from last year. I was diagnosed with 3A (7cm x 6cm x 6cm) adenocarcinoma on December 14, 2020, after having a little dry cough for 2 months—I was 49, very active, ski patroller, health nut, and never smoked as well. It devastated me and my family, and I’m still freaking out about it. I have tried to avoid the internet completely, mainly because what I read terrifies me and does me no good. I need to hold on to hope and optimism. I just finished 3 rounds of hardcore chemo (Cisplatin) and Keytruda, and am headed to MD Anderson April 13 for a hopeful upper left lobe removal. The lymph nodes near my mediastinum are malignant and angry, and the surgeon isn’t 100% sure they can be removed. Those are the nodes where they easily spread from. My surgery will be followed by radiation, likely chemo, 2 years of Keytruda, and a CT or PET every 3 months for 2 years. Can’t believe this is my life, as I’m sure you understand that sentiment. I sure wish I could talk with someone (you) in a similar situation, as it is an uncommon for younger women to be diagnosed with something like this who haven’t smoked and have no comorbidities. What a horrible roller coaster this has been, and will be. Oh and FYI, we lived in Englewood for 7 years, near Bellevue and Broadway, and frequented Greenwood Athletic Club! Great gym.
I'm also 3A and finishing up with 3 more treatment's.
Other than being tired, I'm good.
Was told by Moffit in Tampa that they will remove my R. Lung if tumor shrunk. Finger's crossed prayers said!