Luckily, I was able to get my PET scan within 2 weeks of the news that I had a lung nodule. If you are unfamiliar with a PET scan, it is pretty much a fancy CT scan in which they inject radioactive tracers into your body to determine where the radioactive glucose moves to in your body. The higher the activity, the more the cells in that area are growing and thus it may show cancer.
My results came back that the area of my lung nodule did not have any abnormal activity! This was the best news one could have at the beginning of the year, but the news fell a little short. Incidentally, they found high activity at my nasopharynx (which is located at the back of the nose at the top of the throat) as well as in the lymph nodes in my neck. This correlated with the areas that were enlarged and inflamed on my previous CT. My primary care doctor, pulmonologist, neuro-ophthalmologist, and new retinologist at UCLA (will talk about this appointment next) all wanted me to get a biopsy of the location. That being said, I had won myself a ticket to go to see another specialist who is an ear nose and throat doctor to get the biopsy. My appointment was scheduled for early February and the biopsy got scheduled for late February.
When we returned from India, I was unable to get into my neuro-ophthalmologist until the end of January. My retinologist was able to fit me in and she did a few more tests. During this visit, I had an eye angiogram in addition to the OCT and vision acuity exams. This is were they inject dye into your veins and take images of the blood vessels of the eye. My results during this appointment were that I had healthy blood vessels of the eye; however, she was concerned that I continued to have progressive symptoms and wanted to refer my to a retinologist at UCLA. I was able to get an appointment in the middle of February for the UCLA retinologist.
Also, the attending physician at Mayo Clinic called and spoke to me about my symptoms both previous and new since my appointment and recommended a few additional tests. Ultimately, I saw my primary care provider and she ordered a CT scan from my head to my pelvis to look for any potential cancers or other abnormalities that could cause an eye response from a systemic problem.
On December 23rd, I received a call from her that I had a nodule/mass in the lining of my lung (called the pleura) near the diaphragm as well as several borderline enlarged neck lymph nodes. Being in healthcare, I knew this location of the lung nodule was more concerning than other locations regardless of size. Also, lung cancer was one of the most common causes of paraneoplastic retinopathy. Obviously, this news ruined the holiday for us as we processed the "what ifs" and worried about getting seen quickly.
I was able to get a referral to a pulmonologist at a cancer center before the new year. Typically, the recommendation would be to get a repeat CT scan in 3 months to monitor growth; however, they were able to review a chest x-ray that I had earlier in the year (to rule out active TB) and a previous CT of the abdomen and the nodule was not present at either time. For that reason, the pulmonologist ordered a PET scan to look for activity in the lesion that would indicate certain types of cancer. Luckily, my insurance covered the exam and got the prior authorization quickly.
More to come on the PET scan results and next appointments.