Topic: New to the Site
Before even introductions, I must say I am overwhelmed by the amount of knowledge, research, support, love and passion I have seen on this site for the couple of weeks since I first discovered it. I realize now how little I know, and how much I still have to question and learn.
I'm Sandy and my partner and the love of my life (25 years and father of our beautiful 23 y/o daughter) was diagnosed in May with CC. This after a long and painful run around as our primary care physician was convinced this was a parasite - we eventually were laughed out of the office of an Infectious Disease specialist who told us a 9cm tumor on an MRI was clearly not a parasite. A needless battery of tests and then finally the biopsy confirming the CC. At this point, completely confined to the liver. Since then we have consulted with several surgeons and oncologists - all said they could not remove the mass because in addition to the large tumor there were also a number of satellite tumors on the other side of the liver. They recommended systemic chemo - a combination of 2 - all confirming there was no cure and offering slim odds.
Dave is a very fit, strong 61 year old, never sick a day in his life so all this was devastating and hard to process. No jaundice, no weight loss, only some discomfort around the abdominal area where the tumor was pressing.
Then we met Dr. Fong at MSKCC, the most extraordinary man, who at least gave us hope. He proposed a combination of surgery and implanting a pump to deliver chemo directly to the liver as our best odds. Initially he thought he could surgically re-sect the liver but the CatScan taken the day prior to surgery showed for the first time a spot on Dave's lung (endoscopies, colonoscopies, had all been clean). He felt that with that, the size of the mass and inability to get clean margins, and the extensive spread of the satellite tumors to the other side of the liver, surgery to remove the primary mass was no longer an option. He would move forward with the surgery to position the pump.
He performed surgery on June 24 - upon going in he discovered some lesions around the liver, halted the surgery and had the lab look at them - they proved to be benign so he moved forward with positioning the pump, and while he was at it, killing off as many of the satellites as he could see.
The recovery has been very very hard. The hurry up and wait part being the worst, as we were told we would have to wait several weeks before beginning the chemo- all the while knowing the cancers could be growing and spreading with nothing being done to stop them. We also were told that due to the spot on the lung, we would need to also be doing systemic chemo in addition to the pump to attack the spread. In addition to discomfort from the surgery, the worst seems to be fevers and constant drenching sweats, inability to sleep,and loss of appetite.
Tomorrow is our first post surgery follow-up with Dr Fong. Immediately after we meet Dr. Kemeny for the first time,the oncologist who will be managing the chemo. We went in Thursday for another CatScan so I imagine we will also learn the most current status of any other spread.