Newbie gets a port!

Hi All,

I'm having outpatient surgery for my power port on Dec 8th. FOLFOX/Avastin begins next Tuesday, Dec 14t at Hopkins. Family support is very strong. We've prepared spirit, body, mind, household and financial. I'm working, exercising, cleaning, stayin' busy living, and laughing.

What did one polyp say to the other?.... "The food here stinks!"

In 2007, an average 200 lb, 6 ft, white male volunteered for a colonoscopy at age 45. I presented with no symptoms.
GIMD:" Why are you here?"....Well fancy that! It turns out I needed a big polyp removed via right-hemi colectomy! CT-scan was clear. CEA was near 1. "GIMD: "I've seen this before and they are always benign." Well fancy that! CANCER...Path confirmed malignancy with good margin and negative in 21 lymph nodes. Follow-up colonoscopies at 6 and 18 months were clear. Bloodwork completed at various doctors and at spotty intervals and I'm still tracking some down just for shiggles.I still love my GI doc! I have to thank him for taking me in the first place. Oncologist and second opinion at GBMC were the same "Go live your life"

Fast forward Oct 2010 and a GI visit for mild but steady and dull stomach ache. I feel full.
GIMD: "Normally...Prilosec and out the door, but I've learned my lesson with you, so let's do blood work and an ultrasound just to be safe." Prilosec worked instantly - no stomach issue. Ultrasound, then CT w/contrast, then PET, along with CEA=1600 confirmed stage IV in liver (3 masses) , lungs (12 nodules) and two chest lymph nodes lit up. CT-guided biopsy confirmed colon cancer cells and KRAS-WT (Wild Type). So, a small ray of hope on chemo responsiveness. Right afterward, I underwent colonoscopy (42 month mark) looking for another primary but only found two small polyps that were removed and simulataneously had a EGD with Barrett's noted. I'll stay on the Prilosec.

So, somehow, I went from T1N0M0 in 2007 to T0N1M1 in 2010. I would bet blood, then liver, then lymph nodes, then lungs so somehwere along the line I was T0N0M0,T0N0M1 and finally T0N1M1. Without a recurrence of the colon as primary, I can only guess micro-metastasis in the blood were at play. I was left wondering if we could've caught this a bit sooner and off to the internet I did go!

I have an analytic outlook and am able to execute plenty of research even without a secret decoder ring. One relevant paper I saw, published 2006, described a rigorous follow-up of 814 stage 1 and 2 patients. Only 4 stage 1 and 16 stage 2s recurred. Since there were about 400 stage 1s, that puts me in an elitely negative category of 1% recurrence. I also noted that 794/814, 97.5% made it three years without recurrence. It's no wonder that there is little progress furthering stage 1and 2s prognosis since improving 97.5% pales in comparison to improving a dated 10% 5 year stage IV survival rate. Also, I noted that half of those 20 had multi-metastasis when first discovered. That was a bit of a shocker since I was beating myself up assuming rigorus early recurrence detection might return an above 95% cure rate like my past stage 1 prognosis. BTW- The treaments were dated but 17 of the 20 sadly met their demise within three years. The three liver-only recurrences made it 3 years, so that's a 30% chance I may have denied myself. Certainly liver-only recurrence makes surgery a viable option. It's not an option in my current condition. I suppose I could make an argument that 3 masses in liver versus 12 in lungs would have made it a difficult task to have caught the liver-only stage - if that window existed at all. Overall, I'm seeing improving progression and survival numbers but I know I'm in a very tough spot. Our hope is to have a LONG but difficult journey.

Genetics testing is underway at Graham Cancer Center for Lynch. I presume a weak link on my Mom's side but no one very young died of colon cancer. I have lots of brothers, sisters and cousins. Interesting that Dr. Lynch promotes a potential breast/colon cancer link but not many peers agree. My one sister had breast cancer at 33. If I sum breast cancer, juvenile onset diabetes, and colon cancer, the family history is a trainwreck.

Visited Hopkins (Baltimore), Jefferson (Philly), and Helen F. Graham Cancer Center (Christiana, DE). We loved Jefferson folks but picked Hopkins for various reasons. It was not an easy choice.

I'm seeking great recent papers on recent survival rates, multi-site surgery, criteria for surgery, side effect mitigation (found a good one for neuropathy), and down stream treatment efficacy. I feel the need to further classify myself in order to make informed decisions. I am younger than average. I am stronger than average. I am a controller.

Finally, I am bothered by the "she said, he said" mentality of the medical/naturalist debate. Will it ever end? No!. I'm pretty sure that people with cancer despise cancer politics. My wife is pro-natural and pro-western when appropriate. I love her very much so I'm going both ways because we are fighting this as a team.

Another funny thing is that the guidance I hear now is the same now as it was in 2007..."Go live your life!"

And so I shall.

Regards,
Dave