Diagnosed in Januray of 2007...I have a couple of key questions leading up to my PET/CT scan tomorro

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JONinAPPLEVALLEY
JONinAPPLEVALLEY Member Posts: 17
edited March 2014 in Colorectal Cancer #1
Hello. I am a stage 4 colon cancer survivor who was diagnosed in January of 2007 (2 spots on liver + 3 out of 33 nodes involved). Since my initial diagnosis, I had a liver resection in June of 2007 followed by an additional 3 months of chemo. In November of 2007, I was declared cancer free. Unfortunately, one tiny spot returned in Janurary of 2008. After 4+ months of chemo, I had a second liver resection in June of 2008. After my liver resection, I completed an additional 12 rounds of Folfiri + Avastin. I just completed my last chemo cycle on January 14th of this year. Last week, I had a routine CT scan that my doctor wanted to use as a future baseline. After reviewing the scan, a 1.3cm spot was found in section 6 of my liver. Although the CT scan revealed that this a low density spot without any enhancement, my oncologist ordered a PET-CT for tomorrow. Since last year's recurrence also showed that my spot was low ind ensity with zero enhancement, I am quite worried that this is cancer. My CEA at diagnosis was 67. After a few months of chemo, it went down to 1.2 (this was prior to my first liver resection). Since then, my CEA has fluctuated between 0.8 and 1.5 (it was 1.5 before my last liver resection in June of 2008). Even after my liver resection and several rounds of chemo, it stayed around 1.3 After 8 chemo sessions, it went all the way down to 0.8 Since Thanksgiving, it has always gone up by .1 every two weeks. I am now at 1.4 Since my wife just gave birth to our baby girl l0 days ago, I am extremely worried about the possibility of not being around for my family. I do not know what to make out of my CEA and most recent scan. Although the radiologist can now see that this spot was visible one month before my surgery, the intraoperative ultrasound performed during my operation did not pick up on any tumore....I am not sure which one to believe:)

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  • CherylHutch
    CherylHutch Member Posts: 1,375
    #2
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    Welcome, Jon!
    Welcome to the boards, Jon! Not that this is the club everyone is wanting to join, but if you have to, then this is definitely the best one.

    That is a lot on your plate... the coming and goings of spots, then surgeries, then all is clear, then another spot. Congratulations on the birth of your brand new daughter!! Is it any wonder your emotions are running the gambit right now?? Totally natural and totally normal that you would be feeling this fear.

    But... take a big old breath... and try to relax. The best case scenerio is that the PET scan won't light up at that spot, so you can breathe easy knowing it's a benign one. But, IF it should light up, then it is one spot that will have to be treated and dealt with. That, unfortunately, is the nature of this beast... it comes, it goes and just when we think we are done with it, it pops up again. For some reason, the colon cancer beast seems to like the liver and the lungs. I'm not sure which place is the worst one to get these spots. So far (knock on wood) I don't have anything on my liver... but I do have spots on my lungs. First time we found them, there were 7, but I had one of them ablated, so now I have 6. That's 6 too many as far as I'm concerned... but they are "lazy" spots and are growing at a snails pace. So rather than treating them or bombarding them with chemo, we are in a wait and see mode... which means scans every two months to check on their progress.

    Your beast seems to prefer your liver ... and if they are going to pop up there, they seem to pop up one at a time. All of us go through those times when we are afraid of the future... because you can't help it when something new pops up. Then, when you have a test and they don't find something, we are sooo excited. The highs and the lows are hard on us emotionally.

    But you hang in there! You've made it this far and you are going to make it much farther! If the beast shows his ugly face, we beat him back into submission... and onwards we go! Heck, you've got to beat the beast because you have to be around to walk that little darlin' down the aisle at her wedding one day :)

    Hugggggs,

    Cheryl
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #3
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    Minnesota?
    Hi Jon,

    Welcome to the Semi-colons and CONGRATULATIONS on your baby girl! How wonderful. I can't help your predicament (my tumor didn't give off a CEA and I didn't do any chemo for Stage III), but I was just wondering if your Apple Valley was the one outside of MPLS. I live on the North Shore and just wanted to say HI!

    peace, emily the juice chick
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    #4
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    2bhealed said:

    Minnesota?
    Hi Jon,

    Welcome to the Semi-colons and CONGRATULATIONS on your baby girl! How wonderful. I can't help your predicament (my tumor didn't give off a CEA and I didn't do any chemo for Stage III), but I was just wondering if your Apple Valley was the one outside of MPLS. I live on the North Shore and just wanted to say HI!

    peace, emily the juice chick

    apple valley got my attention also.
    Congrats on the baby girl! I'm a stage III going through chemo, not familiar with CEA, still haven't learned a lot of the terminology. But - I'm in Woodbury......
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #5
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    2bhealed said:

    Minnesota?
    Hi Jon,

    Welcome to the Semi-colons and CONGRATULATIONS on your baby girl! How wonderful. I can't help your predicament (my tumor didn't give off a CEA and I didn't do any chemo for Stage III), but I was just wondering if your Apple Valley was the one outside of MPLS. I live on the North Shore and just wanted to say HI!

    peace, emily the juice chick

    apple valley
    I was wondering the same thing. We lived in Apple Valley, MN for 4 years. Are you in MN or CA or a different Apple Valley.
    Kathleen
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #6
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    Kathleen808 said:

    apple valley
    I was wondering the same thing. We lived in Apple Valley, MN for 4 years. Are you in MN or CA or a different Apple Valley.
    Kathleen

    Jon in Apple Valley
    Hi. We live in Apple Valley, Minnesota. I did my undergraduate work at the University of St. Thomas while my wife went to the College of St. Catherine. Small world hugh?
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #7
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    JONinAPPLEVALLEY said:

    Jon in Apple Valley
    Hi. We live in Apple Valley, Minnesota. I did my undergraduate work at the University of St. Thomas while my wife went to the College of St. Catherine. Small world hugh?

    small world
    Hi Jon,
    MN was a wonderful place to live. I know the medical facilities there are great. I wish I had an answer to your question. We are at the beginning of this journey and are really in the learning mode.
    Take care. Stay warm by the fire.
    Kathleen
  • dixchi
    dixchi Member Posts: 431
    #8
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    Kathleen808 said:

    small world
    Hi Jon,
    MN was a wonderful place to live. I know the medical facilities there are great. I wish I had an answer to your question. We are at the beginning of this journey and are really in the learning mode.
    Take care. Stay warm by the fire.
    Kathleen

    Best
    Hoping for the best on your scan......seems sometimes the hardest part
    is to beat back that emotional beast that raises its shaggy head before
    every test. I share your concerns since my ca hit my liver as well.....
    would rather it not mess with my liver anymore.....I can do without by
    ovaries now or some other parts. If treatment does turn out to be needed
    maybe RFA is a route to consider......sending healing thoughts your way.

    Barbara
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #9
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    Kathleen808 said:

    small world
    Hi Jon,
    MN was a wonderful place to live. I know the medical facilities there are great. I wish I had an answer to your question. We are at the beginning of this journey and are really in the learning mode.
    Take care. Stay warm by the fire.
    Kathleen

    ya, you betcha!
    It IS a small world doncha know!
  • impactzone
    impactzone Member Posts: 551 Member
    #10
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    Hey good luck and congrats.
    Hey good luck and congrats. Ypour story sounds like mine (dx 9/06 Stage 4 - liver resection, chemo, clean, lung mets show up, surgery, clean scan...more surgery...clean scans....)It is great that you can get the scans and surgery remains an option. I have 2 kids as well and realize how much that weighs on me. I go for a scan at Stanford on Monday and then find out if all is well for 3 months or more options...It seems that CEA can be a marker for you which is great. That allows for PET /CT scans when needed. I read a comment once from a nurse who gave some advice that did stick with me... "Don't worry about any problem, until there is a probem." It sounded initially so stupid but it gets me through the day when my mind gets going.
    Prayers and support
    Chip

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