my dad was diagnosed with stage 4 colon cancer with liver mets in 12/04. The first doctors were anything but encouraging.
We continued to MAKE dad get more opinions. We didn't stop until we found the doctor who had faith in conquering this nasty beast. We found that in Dr. Ahmed Ghany at OSU East. He is a doctor of many things (more degrees than a person should be able to earn!) However, his experience in pathology was extremely helpful and has helped him lead us in the right direction at every turn. B/c the tumor growth was so severe in the liver, we did chemo for 6 months. Dad's CEA started at 703 (normal 1-5) They kept telling us it was the direction that it went once treatment was started. I'd prayed for a reversal, and 6 weeks into chemo, we got just that...the CEA went to 30.7! It continued to go down so we knew the chemo was working. In June, he had comprehensive surgery with the best docs that Dr. Ghany could find - Dr. David Geller - the head of the liver cancer center at the University of Pittsburgh Medical Center. Dr. Geller got his mentor to delay a vacation to do dad's colon, then pass the scalpel to Dr. Geller...they also took out his gall bladder and appendix to be safe. It was a 14-hour surgery that saw 60% of dad's liver resected and 12" of his colon. He never even got jaundice and the nice thing is that the liver regenerates, so by Halloween, it was back as much as was needed! IF he wouldn't have been able to resect his liver, because of the regeneration, we were looking into a live transplant where I or a brother would give him part of our liver and they would have just tossed his : ) They can't give you a new one from an organ donor b/c once the cancer has spread through the bloodstream, it is always a possibility that it would come back. Dad was rid of growing cancer 7 months after initial diagnosis (keep in mind they figure these liver mets had been growing for 10 years - when he turned 50 someone should have recommended a colonoscopy, however, that didn't get done til he was 60). Dad underwent a few rounds of post op chemo to clear the way and then he was off of it for a long time. Since then a few very very small spots showed up in his lungs, but we are keeping them under control with chemo. Dad has never missed a day of work unless he was getting chemo or having surgery or recuperating. The side effects have been almost nonexistent.
There are lots of things I've learned, but a few of the real gems are:
1) No matter how much you respect your family doc or how you don't want to 'disagree' with their diagnosis, you need to get multiple opinions. We started in Van Wert, Ohio, went to Toledo, Down to Duke University and final hit paydirt at OSU East with Dr. Ghany. You find a doc that will be positive - no matter how many referrals it takes or how many folks you turn to for help.
2) You visualize the cancer leaving your body and getting healthy again. Of course we also felt prayer was critical - candles were lit around the country by friends and relatives.
3) Someone should always be with the patient and spouse. I go to everything with mom and dad - I take notes - I research ahead of time so we can talk intelligently. It is too much for the patient and spouse to think about as terms and things are thrown their way. Start a binder. Actually at a discovery channel store, you can get a free livestrong binder. This binder came out about a year after we'd begun this journey. I marveled at it b/c it was basically what I'd set up on my own to keep my own sanity. Notes are key!
4) Do your research. The message board at www.cancercompass.com is great. I have a lot of my dad's story out there.
5) In working with medical providers, I make sure they all see my dad as a person and not just a patient. This has been easy b/c we've had such great medical professionals, however, even at the UPMC hospital, I made sure each nurse understood we were there, watching and helping as necessary but that my dad had never been sick a day in his life and this was a scary experience for him.
6) Find the success stories and stay positive. The patient needs to keep a positive attitude or all the medicine in the world won't help.
I could write tons more, but don't want to totally overwhelm you. I can share the chemo drugs dad was on, other tips if going through chemo or surgery...to see what is possible, an email to Dr. David Geller (the nicest individual and most qualified doc for this in the world). Tell him Michelle, Mike Langhals' daughter sent you. He's helped tons of folks that we've sent him throught this board.
You have to become passionate about living strong with cancer and building a team of medical professionals and family and friends who will help the person with cancer see the hope and the healthy side of things. Like I've said, Dad is doing great. Works everyday. Golfs regularly and farms 500 acres on the 'side'. I attribute it all to attitude, a support system and finding the right docs!