Apr 22, 2014 - 12:34 am
I have been lurking for a few days, reading almost all the thirty something pages of topics.... feel like I know many of you, and appreciate the good vibes that are given off of this site.
October 9, 2012
I met my brand new never before seen Internal Medicne PCP at an appointment I made to explain the explaination from a ct scan of my right kidney mass that was found on a routine pre surgery abdominal ultrasound. ( I was scheduled for bariatric surgery to "cure" my morbid obesity). My poor new doctor, imagine him having to come in and tell someone you have never seen, or known about, and tell them they have a 12cm mass on their almost a totally necrotic right kidney, that they have a 99.99% sure diagnosis of kidney cancer.. I know I surprised him.. I was not surprised, scared, incredulous or uninformed. I had figured it our already... with NO symptoms of any kind, I could not understand ultrasound findings of a mass on the kidney, I had already read everyting I could find on the internet over each sentence in the report... I already knew it had to be cancer.
once I had the consult with the Urolgist, I was self prepared to demand a radical nephrectomy and nothing less.... plenty of people live with one kidney, and I saw no downside to the proceedure... right now.. no delay...GET IT OUT..... and surprise to me.. that is exactly what my surgeon said.. no other choices, or information... except that after the operation, we would discuss the pathologist report, and decide on the next step.
The surgeon is the typical urologist... " We got it all, it was fully contained no evidence of mets" I was diagnosed and cured in 10 days of kidney cancer....How could I honestly go around and tell anybody that I had cancer and now was cured? I didn't even feel I had earned the diagnosis... let alone the cure.
Fast foreward to December 9, 2013...
for 14 months,ignorance was bliss... then! I was scheduled for a CT brain scan because my poor PCP AGAIN said the constant positional head pain I had was not a normal headache, and kidney cancer, part 2 began... diagnosis after the crainiotomy: brain mets RCC.
The PET scan before the brain surgery showed several nodules in my lungs... told they were likely mets also...
So I can say, with no guilt, that I am earning the diagnosis... I have had no serious, only annoying side effects from the Sutent, and will know if I am showing the standard response rate for the drug.
I am lucky that I have only had to endure the recoveries from surgeries, and not the targeted therapy drug. I have to get up and get exercise to keep going.. and I have learned from this discussion group that I better look into nutrition too...
So, here I am, and a short version of how I got here....