Nervous

vinny3
vinny3 Member Posts: 928 Member
edited March 2014 in Colorectal Cancer #1
Hi folks,

Going along nicely but then hit a bump in the road that raises doubts. Recap: Stage 2 rectal cancer diagnosed 4/05 treated with chemoradiation and local excision. Recurrance locally 4/06 treated with abdominoperineal resection, permanent colostomy and followed by 9 cycles of Folfox/Avastin. Have been doing well and played tennis for first time last week.

Now the doubts. Saw the surgeon about 6 weeks ago and he thought I was doing well. Only he happened to mention when reviewing my pelvic scan reports that they need to be sure to mark on the requesting slip "pelvis to perineum", otherwise he didn't think they covered the whole area. Of course, my tumor was out toward the edge or perineum so that made me think a little. Then I messed up the appt dates with the oncologist as I had changed it for a trip. However I went in and had my blood drawn and meet with her next week. The problem- my CEA is 1. Now most people would be happy with that. However, my CEA has never been high. It started at 0.8, was 0.7 after first surgery, went up to 1 at the time of my recurrance (? coincidence now), was 0.4 after surgery and then 0.6 in Jan this year-2 months after stopping chemo.

I know the CEA is not a real accurate test and there is lab variation. But I keep thinking, what if it is a very sensitive test for me? I will be discussing this, of course, with the oncologist. My problem is I'm not sure how much I want to press such as getting more scans at this time. We are planning on a trip to Paris and Nice in a month and the thought of dealing with a possible recurrance now is more than I want. I'm usually a very optimistic person, not a worrier in general, but am not feeling that confident right now.

Sorry for the long note. It just helps to get it out. ****

Comments

  • RunnerZ
    RunnerZ Member Posts: 185
    #2
    Vinny,hate to break it to you...but you have not hit any bump in the road yet, and that is good. your CEA levels are all WAY below the levels that are considered suspicious, and those minor variations are almost certainly not indicative of anything but just that, normal fluctuations. My CEA was once elevated the day after a colonoscopy, it went down one month later to normal. I am an eight-plus year survivor of rectal cancer and I remember very well the times you are going through right now...however, truth be told, you are probably well on your way to being cured (5 years disease free) and just experiencing the jitters that all we survivors get from any medical news that does not scream PERFECT! Plan your trips, make your appointments, just do it...all...you will be fine!
  • sladich
    sladich Member Posts: 429 Member
    #3
    Hi ****,

    My CEA remains the same and has never been an indication of what's going on. To put your mind at ease request another scan. What is a abdominoperineal resection?

    Debbie
  • kathleenss
    kathleenss Member Posts: 49
    #4
    sladich said:

    Hi ****,

    My CEA remains the same and has never been an indication of what's going on. To put your mind at ease request another scan. What is a abdominoperineal resection?

    Debbie

    Abdominoperineal resection involves removal of the sigmoid colon, rectum, and anus, thus requiring a permanent colostomy.

    When mine was done last fall, they loosened up everything laporoscopically, and then removed it from an incision below. One of the laporoscopic incisions was used for the colostomy. My surgeon explained that the sigmoid colon was removed because its blood supply was interrupted by the surgery and the removal of the lymph nodes, so it wouldn't be viable any longer.
  • jams67
    jams67 Member Posts: 925 Member
    #5
    I was told not to worry about anything in the normal range. The test can vary due to many different things.
    Have fun on your trip. If it would make your trip more of a celebration and less worry, then scan before you go so that you can relax and have fun.
    Jo Ann
  • robinvan
    robinvan Member Posts: 1,012
    #6
    Hi ****...
    My wife's words to me when I get stressed out over "what ifs". "Now don't go borrowing trouble!" She's usually right on!
    Talk these things over with your Onc next week. She can probably help to put your mind at ease.
    Rob; in Vancouver
    "A Cancer Journal" www.rob-pollock.blogspot.com
  • DK2006
    DK2006 Member Posts: 126
    #7
    Hi ****,
    I'm glad to hear that you feel great and that you are even playing tennis again!! Great news!
    I don't think that you should worry about a 0.4 CEA increase. It could be a different lab doing the test, a new bottle of reagent, new technician....
    Here is a question for you or others. My oncologist tells me that you won't even see something on a CT scan until the CEA is elevated. Does everyone agree with this? Has anyone had a 1.0 CEA and had metastasis of colon cancer that is/was picked up on a scan?
    Best wishes,
    Donna
  • jerseysue
    jerseysue Member Posts: 624 Member
    #8
    I know how you feel my CEA was 1.4 and last week it was 2.5 however the CT was all clear so I'm still NED. I even asked the onc how come the CEA went up? He said it could be the amount of blood used during the exam it could be the machine. So I'm not worring enjoying NED. But I do know how you feel. The PET scan didn't pick up anything when my CEA went up to 6.5 last time however the CT scan saw two little spots on my stomach last time.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    ****,

    My CEA was notorious for it's lowness (Is that even a word????). It got to the highest point not too long ago (still WAY in the normal range...), I had a CT Scan, and nothing found....

    It's GRAND that you are playing tennis...YEA!!!!

    We all are more in tune to our bodies, after battling cancer, it's one of the perks....

    Enjoy your trip, don't think about it...I'll leave some of Europe for you...lol!

    Hugs, Kathi
  • FRANTIC
    FRANTIC Member Posts: 106
    #10
    DEar ****:Plan your trip to Paris and enjoy yourself. There is one test you should inquire about and that is the CA19.9. MY CEA was always
    0.5. However that Ca19.9 fluctuated and as of April it was 119 the normal is not over 37. I believe you are fine. If I can walk and travel even what I am going thru I would get on a plane and get away from all of this. So go and enjoy your trip. You are feeling good so stay with that thought. Your friend Fran from LOng Island
  • vinny3
    vinny3 Member Posts: 928 Member
    #11
    sladich said:

    Hi ****,

    My CEA remains the same and has never been an indication of what's going on. To put your mind at ease request another scan. What is a abdominoperineal resection?

    Debbie

    Thanks, Debbie, I was just feeling a little low then. I know it is not that sensitive a test.

    ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #12
    RunnerZ said:

    Vinny,hate to break it to you...but you have not hit any bump in the road yet, and that is good. your CEA levels are all WAY below the levels that are considered suspicious, and those minor variations are almost certainly not indicative of anything but just that, normal fluctuations. My CEA was once elevated the day after a colonoscopy, it went down one month later to normal. I am an eight-plus year survivor of rectal cancer and I remember very well the times you are going through right now...however, truth be told, you are probably well on your way to being cured (5 years disease free) and just experiencing the jitters that all we survivors get from any medical news that does not scream PERFECT! Plan your trips, make your appointments, just do it...all...you will be fine!

    Thanks. I've enjoyed your story of longterm survival I'm keeping you in mind as an inspiration.

    ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #13
    jams67 said:

    I was told not to worry about anything in the normal range. The test can vary due to many different things.
    Have fun on your trip. If it would make your trip more of a celebration and less worry, then scan before you go so that you can relax and have fun.
    Jo Ann

    I'm feeling much better now and will enjoy the trip. Thank you for responding.

    ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #14
    robinvan said:

    Hi ****...
    My wife's words to me when I get stressed out over "what ifs". "Now don't go borrowing trouble!" She's usually right on!
    Talk these things over with your Onc next week. She can probably help to put your mind at ease.
    Rob; in Vancouver
    "A Cancer Journal" www.rob-pollock.blogspot.com

    I'm feeling better and will talk with her. Hopefully she will just agree not to worry but we'll see. Thanks. ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #15
    DK2006 said:

    Hi ****,
    I'm glad to hear that you feel great and that you are even playing tennis again!! Great news!
    I don't think that you should worry about a 0.4 CEA increase. It could be a different lab doing the test, a new bottle of reagent, new technician....
    Here is a question for you or others. My oncologist tells me that you won't even see something on a CT scan until the CEA is elevated. Does everyone agree with this? Has anyone had a 1.0 CEA and had metastasis of colon cancer that is/was picked up on a scan?
    Best wishes,
    Donna

    I don't agree that the CT scan won't show anything unless the CEA is elevated. My CEA has always been in the normal range and my tumor showed up on the CT scan. ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #16
    jerseysue said:

    I know how you feel my CEA was 1.4 and last week it was 2.5 however the CT was all clear so I'm still NED. I even asked the onc how come the CEA went up? He said it could be the amount of blood used during the exam it could be the machine. So I'm not worring enjoying NED. But I do know how you feel. The PET scan didn't pick up anything when my CEA went up to 6.5 last time however the CT scan saw two little spots on my stomach last time.

    I'm glad you are still dancing with NED. I won't worry about the CEA at the present time.
    ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #17
    KathiM said:

    ****,

    My CEA was notorious for it's lowness (Is that even a word????). It got to the highest point not too long ago (still WAY in the normal range...), I had a CT Scan, and nothing found....

    It's GRAND that you are playing tennis...YEA!!!!

    We all are more in tune to our bodies, after battling cancer, it's one of the perks....

    Enjoy your trip, don't think about it...I'll leave some of Europe for you...lol!

    Hugs, Kathi

    Thanks Kathi. I have always enjoyed your posts. I felt kind of sheepish last night. It's remarkable how a day cruising on a lake and drinking a few vodka tonics changes one's outlook. Was just feeling sorry for myself. Now moving on.

    ****
  • vinny3
    vinny3 Member Posts: 928 Member
    #18
    FRANTIC said:

    DEar ****:Plan your trip to Paris and enjoy yourself. There is one test you should inquire about and that is the CA19.9. MY CEA was always
    0.5. However that Ca19.9 fluctuated and as of April it was 119 the normal is not over 37. I believe you are fine. If I can walk and travel even what I am going thru I would get on a plane and get away from all of this. So go and enjoy your trip. You are feeling good so stay with that thought. Your friend Fran from LOng Island

    Dear Fran,
    It's so good to hear from you. I've been very worried. Hadn't seen any posts from you for months. I hope your pain has improved and you are feeling better. I will look into the Ca 19.9. I was not aware of it. I always thought the Ca 19 was related to the ovaries. Thanks for the tip. Let us know how you are doing.
    Your friend, ****
  • nanuk
    nanuk Member Posts: 1,358 Member
    #19
    my CEA is 38, and I'm planning my next RV trip, which will probably take longer than a trip to Paris..
    A reading of 1 might indicate something, but it's probably not going to matter enough to cancel such a trip; the endorphin (SP) level from your
    trip will probably bring your CEA to zero. Bud

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