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Nervous

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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. Dick

RunnerZ
Posts: 185
Joined: Feb 2004

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!

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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

Dick

sladich's picture
sladich
Posts: 430
Joined: May 2007

Hi Dick,

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's picture
kathleenss
Posts: 49
Joined: Nov 2006

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.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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

Dick

jams67's picture
jams67
Posts: 927
Joined: May 2006

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

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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

Dick

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Dick...
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

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I'm feeling better and will talk with her. Hopefully she will just agree not to worry but we'll see. Thanks. Dick

DK2006
Posts: 126
Joined: Jan 2006

Hi Dick,
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

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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. Dick

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

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.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I'm glad you are still dancing with NED. I won't worry about the CEA at the present time.
Dick

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Dick,

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

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

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.

Dick

FRANTIC
Posts: 106
Joined: Nov 2004

DEar Dick: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's picture
vinny3
Posts: 933
Joined: Jun 2006

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, Dick

nanuk's picture
nanuk
Posts: 1362
Joined: Dec 2003

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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