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Elevated CEA

jzanches
Posts: 5
Joined: Jan 2008

I have not posted a comment on this site for several months, therefore, this will be a larger than normal post.

I am a 72 year-old retired organic/polymer chemist living in Englewood, FL. In early December 2007 I had a colonoscopy that revealed a single large polyp in the sigmoid colon that was aggressively removed, subsequently resulting in a perforation of the colon at the site of the polyp. While on antibiotics in the hospital, the surgeon assigned to me informed me that the removed polyp was cancerous. I had colon resection surgery in early January 2008 that resulted in removal of a 12-inch section of colon as well as numerous associated lymph nodes. These were evaluated and no cancer was found. The diagnosis was Stage I colon cancer. There was one problem: my CEA level after surgery was elevated, 7.7, and it was recommended that I start seeing an oncologist at Florida Cancer Specialists in order to resolve the CEA problem. Subsequently, I had a CEA test about two weeks after surgery that showed a result of 4.4. The oncologist thought that the CEA test results were probably nothing but ordered a CT scan of the chest/abdomen/pelvic area in order to be on the safe side. This CT scan showed nothing. However, a subsequent CEA test showed an elevated result, 8.2. It should be mentioned that the three CEA tests were done at three different labs.

A PET/CT scan of the head to mid-thighs was then ordered for Feb. 15. The results showed two areas of concern. Although there were no hot spots on the liver, the liver was not uniform in brightness. I had an MRI done on the liver in early March that showed no abnormalities. The other problem revealed by the PET/CT scan was more serious as there were three small hot spots in the deep chest area but with no lung involvement. The oncologist identified the hot spots as lymph nodes that might or might not be cancerous. He told me that access to these lymph nodes was difficult and would require the expertise of a thoracic oncologist. He said that the best way to access these lymph nodes for evaluation was a procedure called mediastinoscopy. As Florida Cancer Specialists did not have this capability it was recommended I consider consulting with a thoracic oncologist at Moffett Cancer Center in Tampa if the spots again showed up a subsequent Pet/CT scan scheduled for early May. In the meantime I had a repeat colonoscopy that showed nothing, I had a digital prostate examination that revealed nothing and my PAS test result was 0.79.

In the repeat PET/CT scan the three small hot spots in the deep chest area were still present. There were no other problem areas. As my wife and I planned to head North to the northern shore of Lake Erie in mid-June, my oncologist suggested that I see a thoracic oncologist at Strong Memorial Hospital in Rochester, NY or one at Roswell Memorial Cancer Institute in Buffalo, NY. We were familiar with both and had no difficulty in selecting Roswell over Strong. Our Florida oncologist set up an appointment for me to see a thoracic oncologist at Roswell in late June. At that meeting it was decided that I should have the mediastinoscopy procedure done. The surgery was done on Wednesday, July 17. No cancer was found in any of the three hot lymph node sites. Needless to say, this was a big relief for me as well as for my wife. I will meet with my oncologist at Roswell on Thursday (July 24) to go over the pathology results, recent CEA results and to determine what comes next

However, I suspect that it is not over yet as my CEA level is probably still elevated and the search will have to continue. Once you have cancer, the search never ends, even when you are NED.

I guess I would like to know if my situation is unusual or if it is normal for someone who is a colon-cancer survivor. Currently, I am in a catch-22 situation with respect to my CEA level. It is always great when you are told that no cancer was found but if cancer really is present elsewhere in the body and it is not quickly found, treatment could be fatally delayed. Because of this thought, I sometimes find myself thinking that it might be better to find cancer so that treatment could be promptly started. But I usually realize that positive thinking in this situation would be the better course.

Jose

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

Oh, dear....I can't help....my CEA was never a good indicator...always stayed below 1.5, even before treatment started...
I have a friend who is having a lymph node in/around her lung removed next week...I'll keep you posted...

Hugs, Kathi

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Jose,
I would honestly say stop worrying about it. You could drive your self completely crazy with this. You have already had every test known to man and there is no cancer to be seen. It is possible and hopefully the doctor at Roswell will tell you this, that CEA is not a good indicator for you. It doesn't really matter if you have a extremely low or a slightly higher CEA. The thing that indicates a problem is a steadily rising CEA, over a period of months. For example, when I had lung lesions pop up my CEA was only 0.9, but it then crept up to 1.3, 2.6 or so, 3.8, etc. and then the lesions lit up on the PET scan so they knew they were colon cancer mets. Likewise, my mothers friend had breast cancer and they took her CEA and have been monitoring it since. It always hovers around 10 even though she is cancer free now.
I am sure they will continue to monitor you for approx. 3 1/2 more years. After 5 if nothing else shows up they will more than likely cut you loose.
I hope that helps ease your mind,
Susan H.

nudgie's picture
nudgie
Posts: 1480
Joined: Sep 2006

I agree with the others. Try not worry yourself sick over this. CEA is not always a good marker for everyone. In my case, my CEA was never checked so there is no way to determine if it will ever be a good marker for me as it stays at 0.5.

Also, I have read and have been told that if you smoke, you will have a higher CEA level than someone who does not smoke.

I do agree with the way you are staying on top of your health and questioning everything necessary. To me that is the best way to stay proactive and onto of this beast.

Keep us up to date.

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