When I returned home from my recent road trip, a letter from Blue Cross Blue Shield of Illinois (my health insurance company, also known as BCBSIL) was waiting for me. Even though I already knew they denied my appeal for last September’s biopsy, I was amazed at how quickly I transitioned from tired but happy traveler to enraged cancer patient.

The upshot of their message was this:

“You already have metastatic lung cancer. A biopsy won’t change the fact that you’re going to die from cancer.”

The statement probably came from the independent “physician who specializes in Internal Medicine/Pulmonary Disease” who reviewed my appeal. You can judge for yourself whether I’m overreacting from this excerpt. I bolded some words for emphasis.

” … in this case the member is already known to have progressive Stage IV Bronchogenic carcinoma even after therapy. Specifically identifying the histopathology of this right upper lobe lesion is not going to affect long-term health outcomes.”

Boy, do I feel special.

A Bit of Background

Up till now, I really couldn’t complain about my insurance coverage. I’m fortunate enough to have Boeing Traditional Retiree medical insurance through my husband, and it’s paid for almost everything related to my cancer diagnosis and treatment (except for 10 cents of each carbo-taxol chemotherapy — go figure). I thought I had the gold standard of enlightened coverage.

After my first recurrence of cancer, which gave me my stage IV determination in October 2011, a large ugly tumor grew fast above my right collarbone. It was 3 inches long after about 2 months. In January 2012 I started second line chemo — 6 rounds of Alimta-Avastin which shrunk the tumor almost 90% — followed by radiation.

Six weeks after this second line treatment, a PET-CT scan showed the little sucker was dead. However, two new nodules had formed in my formerly-clear right lung. The nodules glowed hot enough on the PET scan to make them highly suspicious for cancer, but only a biopsy could determine whether the nodules were cancer, radiation pneumonitis (lung inflammation) or BOOP. BOOP stands for Bronchiolitis Obliterans with Organizing Pneumonia, a pneumonia-like condition that sometimes occurs in lung tissue after radiation in nearby tissue. If one or both nodules were cancer, I needed to go back on chemo — probably Alimta, which was effective against my cancer but eventually made me feel like I had the flu for three weeks out of every month. If one or both were pneumonitis or BOOP, I needed to go back on prednisone, an oral steroid with unpleasant side effects. We weren’t looking for lung cancer histology, although that would have been interesting info to have. Histology can determine whether a new cancer tumor is the same type of cancer as the patient’s previous tumor. A different tumor type might indicate a different type of treatment would be useful.

One of my nodules was too small to biopsy. The larger nodule was not accessible by more common biopsy methods of needle biopsy through the chest wall or endobronchial ultrasound. My pulmonologist recommended using the newer electromagnetic navigation bronchoscopy (EMN) to determine if the nodule were cancer or something else. We knew BCBSIL would probably not pay for the procedure because they have a policy stating EMN is “experimental” for all situations (despite the fact that Medicare pays for EMN and 2013 treatment guidelines list EMN as an acceptable diagnostic). BCBSIL had denied all EMN claims made to date by my hospital.

When BCBSIL denied the claim, I appealed. I explained my treatment history, including that my cancer is aggressive, and we needed to know if the nodule were BOOP or cancer to give me appropriate treatment. My doctor reviewed my letter and wrote a letter of his own to stick in the packet. I included scan CDs and appropriate medical reports.

Evidently that wasn’t enough. Because, well, I’m gonna die anyway.

FYI, the biopsy showed inflammation, but no cancer cells. The tumor board thought it was radiation pneumonitis; my pulmonologist wasn’t so sure. We tried prednisone for a month, but it had no effect. A follow-up CT one month after the biopsy showed the biopsied nodule was unchanged, while the other nodule had grown by 50%. My pulmonologist and oncologist agreed I needed to restart chemotherapy.

Misinterpreting Long-Term Health Outcomes

What frosts me about this letter is that a “specialist” decided there was no urgency to get a biopsy because it wouldn’t change my “long-term health outcome.” Did he expect me to go on steroids AND chemo (both of which have a significant impact on quality of life) in case one of them MIGHT work? Or do nothing, since I’m going to die anyway? Well, here’s a news flash: we’re ALL going to die! The purpose of medicine is to keep us as healthy as possible while delaying that inevitable long-term outcome as long as possible.

Unfortunately, such statements from doctors are not an uncommon occurrence for lung cancer patients. Many members of Inspire’s Lung Cancer Support Forum who’ve been diagnosed with metastatic lung cancer have been told, “There’s nothing more I can do.”

My biggest frustration is that in my case – and for an increasing number of lung cancer patients — the doomsday doctor is WRONG. I’m a perfect example of a stage IV patient who has a good prospect for years of a reasonably active life despite my disease.

I was lucky to have enough slides from a 2011 biopsy to have the University of Colorado test my tumor for the relatively new ROS1 genetic mutation in my tumor tissue. Because I tested positive for ROS1, I was able to enter a clinical trial for the targeted therapy crizotinib, a drug which inhibits my ROS1-driven cancer. The trial treatment eliminated both nodules and has given me No Evidence of Disease Status for five months. I am once again able to enjoy traveling, writing, and doing things with my family. If I had not had leftover biopsy slides, an EMN biopsy would have been my only opportunity to obtain enough tissue to test for ROS1. Without that ROS1 trial and crizotinib, I might be dead by now.

Doctors who don’t keep current on new treatment options and then decide a biopsy “is not going to affect long-term health outcomes” for metastatic lung cancer patients are insuring those patients will die sooner rather than later.

That’s not the kind of health insurance I want. Do you?