Newbie gets a port!

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dhepner
dhepner Member Posts: 4
edited March 2014 in Colorectal Cancer #1
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

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Dave
    Welcome to our forum; a good place to visit. It sounds like you will have lots to contribute + hopefully you will find this site helpful too!
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Hi Dave
    We have a number of members here who have multiple site mets and I am sure you will find their experiences helpful.

    Sounds like you are fully involved in your treatment plans which is a very good thing. Being the controling type in this battle is what you need.

    Normally someone will recommend second or third opinions to a newbie but you have that covered too.

    One thing we don't do too much of here is listen to stats, because again we have a number of folks who have faced the direst predictions and have come out on the other side.

    Hope you will post often, ask questions, and offer advice based on your experiences.

    Marie who loves kitties
  • vinny3
    vinny3 Member Posts: 928 Member
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    port
    Hi Dave, welcome to the board although we would prefer that there would be no one else eligible to join but it will be some time before cancer is no more. It looks like you have done alot of research and that is good as you will be your best advocate. The statistics are always behind and each individual is different. There are members of this board who have had advanced colorectal cancer and are surviving with no evidence of disease NED). You might lookup the page of Scouty. She did extensive diet changes as well as traditional medicine. There will be many available here to answer your questions.

    ****
  • thxmiker
    thxmiker Member Posts: 1,278 Member
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    White Papers pre 2007 for
    White Papers pre 2007 for some colon cancers was not good. Be sure to remember to shave around the port before every Chemo Treatment. Pulling out the needle was nothing to ripping out all the little hairs! lol

    I am sittting here waiting for #5 Folfox to finish. Hopkins is a great hospital, and you could not be in much better hands. My Onc studied at Hopkins and is now leading the Cancer research at St. Johns Sanata Monica, Ca.

    We all fear the unknown. Read a lot of the descriptions of symptoms on the posts. That got me prepared for what was coming. The tingeling in the fingers, numbness in the lips, multi trips to the toilet, etc...

    I wish you well!
    mike
  • Kerry S
    Kerry S Member Posts: 606 Member
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    Power port
    Dave,
    Be sure to have your chemo nurse teach you how to use the power port. In your cancer journey you will find some don’t know a damn thing about them.

    Learn the needle size that is good for your port placement. Learn how to flush the port when they finish using it. I had to guide a few nurses in my journey. They were happy with me helping them with it. There is even a right and wrong way to pull the damn needle out for their protection. I still have mine on my desk. There is a photo of it on my expressions page.

    Kerry
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
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    go dave
    I like your attitude and approach.
    I checked out three different cancer centers and my choice was tough as well.
    Your Well documented and interesting read. Rotten luck but that applies to most of us here.
    I borrowed the book of radiation techniques to understand precisely what they were doing.
    I would be interested in what you come up with regard complementary therapies.

    Unfortunately the further I go through the cancer journey the more aware I am of all the
    vested interests medical and complentary and alternative. Being informed and firm is the
    best we can do in extracting the best care for our situation from our health system and surrounding supports.

    best of luck and sorry you had to find us
    Pete
    PS can you post link for the good one for neuropathy as I am coming up to my 4th folfox