“Blue Cross Blue Shield substituted its judgment for the judgment of my treating physician. BCBS deprived me of my best chance to fight this cancer. BCBS was solely focused on its immediate bottom line and did not care if I ran a higher risk of secondary tumors or other future complications. BCBS did not care about the potential insurance costs for future procedures so long as they saved money now.”
In 2019, I experienced how God can take bad situations and use them for good. A minor rear-end collision triggered a series of medical scans. The final scan revealed a grapefruit-sized mass with root-like extensions on the left side of my abdomen. Positioned beside my large intestine, abdominal muscles, and spine, the tumor had pushed my internal organs to the right side of my abdomen. A biopsy identified the mass as well-differentiated liposarcoma. God allowed the car accident to uncover the cancer.
For a long time, I desperately clung to the delusion that this mass did not necessarily mean cancer. Despite my lack of belief in the diagnosis, the medical experts believed it. MD Anderson accepted me as a patient.
My surgical oncologist consulted with a radiation oncologist at MD Anderson—who determined that I needed radiation before the surgery. Otherwise, microscopic cancer cells could easily be left behind during surgery, potentially resulting in multiple new tumors.
The MD Anderson radiation oncologist recommended proton radiation therapy to target the tumor while minimizing radiation exposure to my internal organs and spine. The alternative photon therapy would act like a shotgun—blasting radiation to the tumor and the neighboring organs/bones—creating a higher potential for secondary tumors. I eagerly signed up for proton therapy. At this point, I scheduled my first proton radiation treatment for two weeks later.
But Blue Cross Blue Shield (BCBS) had other plans. The day after we met with my radiation oncologist, BCBS denied the proton radiation treatment claiming it was “experimental and investigational.” MD Anderson immediately submitted an appeal detailing why I needed the treatment, explaining that BCBS was relying on incomplete and outdated information; and pointing out, among other things, that proton therapy had been FDA approved since the 1980’s. In a couple of weeks, BCBS denied the pre-authorization for my proton therapy four times. They claimed that a “Physician Reviewer, board-certified in General Surgery with an added expertise in Surgical Oncology” determined that proton therapy “would be considered experimental/investigational/unproven” for my sarcoma.
My surgical oncologist needed to consult with a radiation oncologist to determine what kind of radiation treatment I needed, if any. An unknown “Physician Reviewer” wholly unfamiliar with my medical history was not more competent to determine what kind of radiation I needed than my medical team.
And yet, Blue Cross Blue Shield substituted its judgment for the judgment of my treating physician. BCBS deprived me of my best chance to fight this cancer. BCBS was solely focused on its immediate bottom line and did not care if I ran a higher risk of secondary tumors or other future complications. BCBS did not care about the potential insurance costs for future procedures so long as they saved money now.
When it was apparent that BCBS would not budge, my husband opened a GoFundMe account. We desperately tried to raise the $167,000 needed to pay out-of-pocket for proton therapy. Many people rallied behind us with prayers and generous donations. I kept praying for a miracle and believed it would come. Either BCBS was going to buckle, or we’d somehow raise the money. I could not fathom that a car accident led to a cancer diagnosis only to be denied my doctor-recommended treatment. But the miracle I prayed for never came.
My radiation oncologist called and said that we were out of time. While we were trying to raise the money, the tumor continued to grow. We had already lost over two weeks fighting with BCBS. We had no choice but to proceed with photon radiation. I had 28 photon radiation treatments between October and November 2019.
On January 3, 2020, the tumor was removed. I have a ten-inch scar from my sternum past my belly button. The tumor claimed six inches of my large intestine and damaged a nerve in my left leg. If I had received the targeted proton therapy, maybe my leg would be healthy—as it was before the surgery.
Far more devastating than any problem with my leg is the knowledge that my husband and I will never be able to have any children. Photon radiation caused the early onset of menopause. Blue Cross Blue Shield robbed us of the ability to grow our family of two, so they could grow their bottom line.
I had to learn to stop asking why so I could focus on what is. I know God wanted this cancer found. I had not even wrapped my mind around a cancer diagnosis when I was thrust into a battle with Blue Cross Blue Shield. Like the car accident, I believe God will use this heartache for good—so that our agonizing fight with Blue Cross Blue Shield can serve to help other patients avoid the same anguish and get the proton therapy they need. I want to use my story to change what is.