Finding the Right Care Team
Finding out I have cancer
I was told that I had cancer after a trip to the emergency room. I had a bronchoscopy and after a few days was told I had cancer. I was told the bad news by the staff oncologist at my local hospital and he instructed me to call his office after the weekend and schedule a PET scan. I did not know what that was and when I called, they told me that they didn’t do that. I was very confused and overwhelmed, so my sister jumped in. I had a friend that was diagnosed with cancer almost one year prior and she reached out to her. She gave us the name of her oncologist and she was able to get us in very quickly to see her at Northwestern Memorial in Chicago.
The journey to building my care team
I met with this oncologist a few times right away. She scheduled a new bronchoscopy because they did not get enough tissue the first time and she wanted to send the tumor out for mutation testing. She scheduled a PET scan to see if the cancer had spread outside of the lung. She also scheduled a brain MRI. We followed up with her and she told me that my tumor was EGFR positive, the cancer was stage 3b, and that it had not spread to the brain.
I started on a TKI and then went to chemotherapy, but the cancer was still progressing. My oncologist sent the tumor out again for more testing and found that it was also positive for MET amplification and was told that my best bet was to find a clinical trial. My oncologist referred me to a colleague in Boston who was recruiting for a clinical trial for EGFR+ and MET amplification lung cancer.
My rockstar team
In Boston, I was seen by a nurse practitioner, a clinical nurse, and an oncologist. I also had a staff member (I am not sure what their title was) that helped me with travel, hotels, and getting reimbursed from the clinical trial sponsor. I was in the clinical trial for about 11 months before cancer progressed again. I was referred to the Chicago oncologist, but it was a bit tricky as she was moving hospitals and was not able to see me. The oncologist in Boston set me up with my next treatment option.
I had a few appointments with an oncologist at Northwestern before my original oncologist was settled in at the University of Chicago. I then started seeing her again and have been with her ever since. She finished her stay at the University of Chicago and went back to Northwestern memorial where I see her today.
I consider myself lucky
I have considered myself lucky because both oncologists that I have listened to my questions and fears and they refer me to outside help if needed. I do not feel that they dismiss small concerns. I see the oncologist every three to four months. My appointment these days are very quick and even though she is a lovely lady I like to keep them as short as possible.
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Where have you found the most support during your lung cancer journey?