On July 22nd I had a whole body PET/CT scan at Aultman Hospital. I had to do a four hour fast that entailed no food, no caffeine, no drink (except plain water) and no nicotine for 4 hours prior to my appointment. Our arrival time was scheduled for 7:15am and I hadn't consumed anything (except for water - you are supposed to be well hydrated) since 11pm the night before. We arrived at 7:00am and shortly thereafter I was taken back to the mobile unit where they checked my blood sugar (fasting serum glucose level: 99 mg/dl) before injecting me with F-18 FDG (Fludeoxyglucose). I had to wait about an hour in a waiting room separate from my husband - and the time went by fairly quickly thanks to a visit from my high school bestie (she is a nurse in Radiology and was on duty that morning). The scan was long but pretty uneventful with the exception of my having to pee several times - likely a result of nerves.
The results were back in the next afternoon and we went and picked them up. I wanted the opportunity to digest the information as well as to research any findings so that I could carry a more intelligent conversation with Dr. Trehan during my follow-up.
The PET/CT showed activity in my right vocal cord - with maximum SUV of 11.4 and no corresponding mass on CT. There is activity in the 2.4 cm nodule within the right thyroid lobe with a maximum SUV of 7.1. There is a focal area of activity in my left lateral femoral condyle with maximum SUV of 11.4. Activity was also seen in both renal masses: the right kidney has a solid 4.7 cm exophytic mass and the left kidney has a 3.3 cm exophytic mass that is either complex cystic or solid. (The radiologist conferred with the interventional radiologist who said renal biopsies could be done but they would be risky and challenging - particularly with the right renal mass which would entail a transhepatic approach).
We met with Dr. Trehan yesterday afternoon. She said the eye pathology puts me at a Stage 2a. Now that I have completed the first step of surgery - the next step would normally include adjuvant treatment with either high dose Interferon Alfa 2b or a clinical trial. Due to my having two cancers and some indeterminate areas (vocal cord, thyroid and femur) - no clinical trials will take me. The high dose Interferon Alfa 2b is very harsh and would last for a year. I'm doing research on the Interferon as it pertains to malignant melanoma but at the moment am 99% certain that I will say 'Hell No!'.
Dr. Trehan has ordered a bone scan to determine if the femoral condyle lesion is cancer or just inflammation. She is referring me to an ENT for the vocal cord and thyroid. She is also ordering BRAF testing for my eye tumor. Then we will have another follow up with her in a few weeks. Dr. Trehan is also not comfortable with renal biopsies - specifically the 'in through the liver' approach mentioned by the interventional radiologist. Unless something changes in the future - we won't be addressing anything with the kidneys.
The Bottom Line
The bottom line is that I am left with a few weeks to research the hell out of high dose Interferon Alfa 2b and decide whether I want 52 weeks of misery or 52 weeks of bliss. We also have to determine if the indeterminate things are anything we need to worry about. I don't particularly relish the thought of having a scope put down the back of my throat while wide awake - so am considering postponing the ENT follow-up. (The thyroid mass hasn't grown in over 3 years. The right vocal cord activity could be due to paralysis of the left vocal cord - which could be a result from intubation for my enucleation. My throat was VERY sore on the left side for almost a week following surgery). The bone scan is easy enough and will be done on August 4th at Alliance Community Hospital.