If you live in a rural area and you or a loved one gets a lung cancer diagnosis (or any stage IV cancer diagnosis), please consider traveling to the nearest cancer treatment center rather than being treated locally. Stage IV lung cancer has a high mortality rate and the expertise of oncologists and the availability of testing and treatment at a treatment center such as Dana-Farber may just save your life.
Recently someone thought they knew why I went to Dana-Farber so soon after learning I had a tumor in my left lung hilum (where a pulmonary artery, pulmonary veins, and the primary bronchus are). While that person was incorrect about why we knew to go to Dana-Farber, her comment did cause me to think it might be a topic of interest for this blog. So…
In 1994 my father died of lung cancer (no, my cancer is not hereditary). I remember taking him for brain radiation the winter before he died. Sometimes the machine would not be working, or there would be a backlog of people. But it was what was available then and there. But at the same time another person with lung cancer in our town was treated at a cancer treatment center in Boston. He survived. While I don’t know if that is why, that stuck with me. That, coupled with learning about the Jimmy Fund and Dana-Farber from years of Red Sox watching, caused Dan and me to “make a pact” that if one of us (and one of our family if we could convince them) got cancer, we would go immediately to Dana-Farber.
When my PCP said I had a mass and it was unlikely that it could be anything other than cancer, Dan and I said to each other (while still in the exam room) that we knew what we must do. But to get an appointment at Dana-Farber, you need a cancer diagnosis. So I had my bronchoscopy and my PET scan locally (an hour from home). Things move slowly locally and I was dying. So I researched how else I could get treated in Boston or speed up the process. I discovered that in just days I could get an appointment at Brigham and Women’s Hospital’s thoracic center. And then, just before we went I received my lung cancer diagnosis. After seeing me and reviewing my medical records at Brigham and Women’s, I was sent to Dana-Farber that same day I think. Things are really a blur for me, but the next few weeks included testing (that would find the ROS1 cancer), a liver biopsy (yes, that was lung cancer hiding there), and radiation (as palliative care, trying to shrink the tumor enough to keep me alive until the test results came back). The experts at DF knew that a healthy, nonsmoker likely had a treatable gene mutation or gene fusion. That’s why they fought my insurance to have the testing paid for. The insurance company (yes, the doctors who review the claim for them) thought I could wait and see how the radiation or other routine treatment (chemo) did first. And that is what would have happened if I had been treated locally. I would have received treatment that would not have been effective for the specific cancer type growing in my body. Let’s just say that I would not be here writing this.
I am very grateful for the quality health care we can receive locally. I think it is important to know that there may be better options. When your life is in jeopardy I believe that you need to find the highest level of expertise that is accessible to you. In my case it was a simple test. A test that they were doing for lung cancer patients at Dana-Farber. But it was not a test that was being done routinely in most places. It still isn’t in some places. Find that place of expertise.
My onco-cardiology appointment was moved to the day before my day of testing and my oncology appointment in December so that we wouldn’t have to travel twice. So for now I will keep on finding joy in the everyday every day, watching the sun rise and hoping its rays of hope will spread throughout the world so we may all live in peace. Thank you for staying with me on this journey, with your prayers and thoughts of hope and strength.
polepole ~ breathe 