Amy R

Amy R., ME

I was diagnosed with stage IV lung cancer at age 41. My story began with a cough that lasted six weeks. I am a Registered Nurse and mother of two young children, ages 7 and 3. I didn't have time to get sick, and I was too stubborn to go to the doctor. But I finally gave in because of pain in the back of my right rib cage.

A chest X-ray showed a large pleural effusion and I was scheduled for a thoracententesis the next day. The doctor drew 1600 milliliters of fluid from around my right lung. I was scheduled to see a Pulmonologist later that week, a repeat chest X-ray prior to that visit showed the fluid had reaccumulated and he drew off another 400 milliliters of fluid at that visit. He thought I had a pneumonia that was causing it. He ordered a CT scan and it showed thickening of the lining of the lung.

At that point a surgical consultation was ordered. Ironically it was with the surgeon I have worked with for 11 years. I now was a patient in my own practice. He performed the surgery and when he went in with the scope, it was evident it was not pneumonia, there were pebble sized tumors all through the lining of my lung. The biopsy came back as adenocarcinoma. And that was the first word I remember hearing from the mouth of my co-worker and friend. Tears streaming down my face all I could say is what about my babies? My good friend and coworker, Danielle, a Physician Assistant, was there too and she has been my rock through all of this.

I was referred to Mass General to see Alice Shaw, MD who is a thoracic oncologist. I thought I was going there for a death sentence, however I left with hope. She told me that the cancer was likely caused by a mutation, especially where I am a non-smoker. She was right, the pathology came back that I had an EGFR mutation that could be treated with a targeted therapy, Tagrisso. I was on this medication for about a year and my scans began to show progression. I requested another biopsy and thank goodness I did because the cancer had changed and now it was small cell cancer. This is one of the mutations that can occur as a resistance to the targeted therapy.

I had 10 palliative Radiation treatments as a scan showed a tumor pressing on my pulmonary artery and a large tumor in my bronchus. The goal was to shrink those then onto chemotherapy. Because of the new biopsy, I had a change in the prescribed chemo drugs. If I had not asked for repeat biopsy, I would have been treated with the wrong medications, receiving two toxic medications that I did not need! This reflects how strongly we need more research into the mechanisms of resistance to the targeted therapies and develop new ways to treat them. I know I am not alone in developing a resistance to the medication; it happens to almost everyone on targeted therapies.

I also have been a huge advocate for myself, and wanting to advocate for others trying to navigate this cancer journey. Becoming a Lung Force Hero is one way I feel I can make an impact. I have also done a public service announcement for Radon awareness in Maine as well as newspaper and local news interviews to tell my story to raise awareness that ANYONE can get lung cancer and to be aware of the symptoms.

My final addition to my story, is the unbelievable support my family has received from the community and even strangers. There have been so many fundraisers, cards, phone calls, texts, etc... from friends, family, co-workers, and even strangers. It is overwhelming how much love and support we have received. I am thankful beyond words!

First Published: March 19, 2019

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