Importance of Biomarker Testing After a Lung Cancer Diagnosis
In the US, lung cancer is responsible for 29 percent of cancer deaths which is more than deaths from breast cancer, colon cancer, and prostate cancer combined.1 Canada is in a similar situation. When first diagnosed, patients and their families experience high anxiety and biomarker testing might not be a top priority at that moment. Often, it then falls on the doctors to encourage patients to receive biomarker testing, but it is not always done.
Today I am going to interview my friend. Her strength to push through tough times for herself and her family and her wisdom to insist on biomarker testing has truly impressed me.
For confidentiality reasons, her identity will be anonymous for this interview.
Coughing up blood
Christine: How did you start your lung cancer journey?
Interviewee: My lung cancer journey started in February 2019 when I first coughed up blood while brushing my teeth in the morning. I had 3 episodes of blood while coughing on the same day. So my husband decided I needed to go to the ER.
The path to my lung cancer diagnosis
Christine: What was your early diagnosis?
Interviewee: The doctor told my X-ray has abnormal findings, so I was called for bronchoscopy the next day. My report was all good and I was so happy, but the CT scan showed something different.
"Primary bronchogenic carcinoma urgent thoracic surgeon referral." I had PET scan before planning for surgery. My PET scan showed primary lung cancer with paratracheal lymph node involvement. To confirm the diagnosis, I had endotracheal bronchoscopic ultrasonography (EBUS) on April 23, 2019. The result came out to be "SQUAMOUS CELL LUNG CARCINOMA" and with spread to distant lymph nodes. My thoracic surgeon did not want to go ahead with the surgery and referred me to an oncologist.
Settling on stereotactic radiation for my brain tumor
Christine: How did you find your brain tumor and what was the treatment plan?
Interviewee: My radiologist and oncologist planned to give me curative multimodality therapy for stage 3A which was 1 month of radiation and 2 weeks of chemo. I attended a chemo class and had tattoo marks for radiation.
Before starting my treatment my oncologist wanted to scan my head. I got a call from my doctor that there is a spot on my brain and asked me to do MRI, which showed 4 spots on my brain to be larger than 10mm. My curative therapy of radiation and chemo was canceled and my cancer was determined to be not curable.
On June 13, 2019, I met neuro-oncologist and she planned whole brain radiation for me. I asked for another option and if she could do stereotactic radiation. She said she will discuss that option with her peers at a conference. After she called me to say all the doctors agreed with the option. I had stereotactic radiation on July 3, 2019.
Am I a candidate for targeted therapy?
Christine: What was your oncologist’s recommendation?
Interviewee: Since my cancer is staged IV, my doctor advised me towards targeted therapy if I had any type of mutation. The radiologist failed twice performing a needle biopsy on me. My first liquid biopsy attempt also failed.
Now my oncologist advised me to go with radiation as long as it works and if another tumor appears then we would get a needle biopsy. I was not satisfied with his answer. Since I do not have any symptoms I don't want to go with radiation. So I decided I would try to find a mutation.
Receiving my final diagnosis
Christine: What was your final diagnosis?
Interviewee: My oncologist and I asked for help from a thoracic surgeon to see if she could perform EBUS again. When I met her she said my CT scan shows fluid accumulation on the same side of my lungs where the tumor is located.
She advised me for a pleurodoscopy and biopsy if possible otherwise EBUS. I had the operation on August 14, 2019. Since I had lots of malignant cells in my pleural fluid, my surgeon did pleurodesis and sealed the lungs lining to prevent future fluid accumulation and sent the biopsy of fluid.
Later the result came out to be "ADENOCARCINOMA". My liquid biopsy showed EFGR mutation. Now I am on pills since Sept 9, 2019.
My whole world was upside down
Christine: How did you feel mentally, emotionally, and physically during 7 months of waiting?
Interviewee: When I was first diagnosed with lung cancer, my whole world was upside down. I cried and cried, why me? I have never ever smoked in my life and neither does anyone in my family. I don't have anyone affected by any kind of cancer in my family. Why did this happen to me? Did I do something wrong? I have 2 small kids, what will happen to them. I locked myself in my room because I don't want to face anyone. How am I going to explain this to my kids and my family back home? Slowly I managed to console myself because I didn't have any symptoms. Only my anxiety and stress was making me weak.
Besides, all my emotional stress I was also frustrated with the waiting game. My treatment has not started. My neuro-oncologist told me I have a maximum of 10-12 months. Radio-oncologists told me I have 4 months without treatment. I was panicked by reading the prognosis and survival rates for stage IV lung cancer. But I didn't want to give up.
By God's grace, I was mentally and physically strong. I researched and read all the news of newer treatments online. I strictly requested my doctors to find mutations before starting any treatment.
I am on medication now. Hope this medication will have a long ride for me.
Don't give up on hope
Christine: What messages do you want to leave to readers?
Interviewee: It is very hard to be strong when someone is diagnosed with this deadly disease. But I would like people to learn and know about this disease. Talk to people, research and get as much information as you can. Talk with your doctor about the options and share any information you have researched.
I also think all lung cancer patients who have stage III or IV should insist to their doctor on receiving biomarker testing. If I wouldn’t have, then my treatment would have been different. Biomarker testing is very important.
Don't just get blindfolded and give up hope.
Does your lung cancer diagnosis impact you financially?