What are we Missing or doing wrong?

[Guest]

My husband was diagnosed with Stage IIIC colon cancer 10/21/04(4.3 CEA) with surgery on 10/22/04 (CEA 2 weeks later 1.7). He did 6 months FOLFOX with only a delay of 1 week due to platelets (52). Finished chemo in May 05. June CEA 1.7; July CEA 1.2; Sept. 2.4 with steady rises every 6 weeks til Pet/CT in January with CEA 5.5. Presacral mass 1.8cm.

Had laporascopic surgery on 2/15/06. 6 Days after surgery CEA 4.2 so the onc. said there was more despite the surgeon spending 3 1/2 hours looking for other cancer before going after the presacral mass. The mass was poorly differentiated with the margins not clear - "focal extension to cauterized edges." He recommended chemo, but I asked him if we could redo the CEA as I did not think 6 days was long enough and I (surgeon/tumor board agreed) really thought he needed radiation due to the margins. Waited four weeks, and the CEA was 3.7. He decided to do radiation on the presacral spot. Went to radiation onc., and he said it was a recurrence and needs to be treated very aggressively. Light dose of Xeloda (1000mg) and 7 weeks/1 day of pelvic radiation with "coning" in to the presacral space last 2 weeks. He really tolerated the radiation really well and finished 5/22/06.

CEA 4 days after radiation 1.6
CEA 1 month later 1.8
CEA 2 month later 2.6

Naturally we are freaking as this is almost identical as to the numbers and path after chemo. I know these numbers are not big, but history has told us they are telling us something. With these slow rises last time, the onc. told us from the beginning that it was probably a local or pelvic recurrence. He is having quite a bit of lower back pain upon standing (same as before presacral surgery) but we attributed that to radiation damage/inflammation.

What are we missing? It seems he has done every thing by the book, and we are so afraid we are facing another recurrence. Why would he have a chemo failure (Drs. term), and then turn around with a radiation failure? Is there something else we need to do. I cannot get him to go for a 2nd opinion even though we live about 1 hour from Vanderbilt which is a NCI designated SPORE hospital for Gastro cancers. Hopefully, if we are facing another recurrence the Drs. will insist that he go.

I know this is long, but we just found out the latest CEA on 9/1/06 and we are really scared. He goes for a regular ONC check up on 9/28/06, and I will ask the Dr. to recheck his CEA then if he does not have it planned.

MA

[missj]

HI,
I WOULDN'T PUT TO MUCH ON CEA RESULTS. I AM STAGE 4 WITH 3 SMALL LIVER METS AND MY CEA IS 2. BEEN THROUGH 3 ROUNDS OF CHEMO AND CEA IS STILL AT 2. HOW ABOUT A PET SCAN? THATS HOW THEY FOUND THE CRAP ON MY LIVER AND I ALL I HAD AT COLONOSCOPY WAS A 1MM POLYP THAT WAS CANCEROUS, NO LYMPH INVOLVMENT, I HAD POLYPECTOMY TO REMOVE THE POLYP WITH CLEAR MARGINS AND WAS TOLD BY PATHOLOGY REPORT TO COME BACK IN 3 YEARS. LUCKILY I ASKED FOR MORE TESTING AND LIVER METS WERE FOUND. BE AGGRESSIVE IN YOUR TREATMENTS AND DO ALL THE RESEARCH YOU CAN BECAUSE IF I HAD LISTENED TO DOC I WOULD MOST LIKELY NOT BE AROUND IN 3 YEARS OR I WOULD BE TO SICK FOR ANY KIND OF TREATMENT TO EVEN HELP ME, AT LEAST NOW I HAVE SUCH SMALL SPOTS AND THEY CAN BE SURGICALLY REMOVED I HAVE A MUCH BETTER CHANCE OF BEATING THIS CRAP. DON'T WAIT UNTIL THE END OF SEPTEMBER TO SEE ONCO, IF YOU ARE THAT CLOSE TO VANDERBILT THEN PUSH HIM IN THE CAR AND GO GET ANOTHER OPINION. MY 1ST DOC AUTOMATICALLY SAID YOU HAVE STAGE 4 SURVIVAL MAX IS 2 YEARS WITH CHEMO, SHE NEVER ONCE MENTIONED SURGERY TO OR OFFERED ANY HOPE. I WENT AND GOT A SECOND OPINION AND IT WAS TOTALLY ASS OPPOSITE OF WHAT 1ST DOC SAID. DON'T MESS AROUND ESPECIALLY WITH A CANCER THEY THINK IS AGGRESSIVE BECAUSE IF IT DOES GET TO HIS LIVER OR LUNGS THAT IS NOT GOOD. GOOD LUCK

[Holly]

edited 9/3/06. hpr

[ASTEPHENS33]

This information came from another internet forum I participate in, so can't attest to its verosity, but personally found the information useful. I have also been experiencing a rising CEA, which the onc thinks is a reflection of the chemo (just finished a couple of months ago), so I'll have to wait and see, but we plan to run some of the additional blood markers indicated. No sure what the treatment plan will be, however, if cancer is detected.

From another website: Summary of serum tumor markers for colorectal cancer:

1. CEA: CEA detected recurrent/metastasis of colorectal cancer with a sensitivity of 76%, specificity of 70% and provides an average lead-time
of 5 months.
2. CA 242: The corresponding sensitivity and specificity for CA 242 were 60% and 87%, respectively. Combination of CEA and CA 242 increased the sensitivity to 88% at specificity of 78%.
3. CA 72-4: CA 72-4 is very useful in detecting early recurrences post-colonic resection with a sensitivity of 78% in a longitudinal study, and was positive up to 100 days prior to clinical diagnosis of recurrent disease. Combining CA 72-4 with CEA increases the sensitivity to 87%.
4. TIMP-1: TIMP-1 detected colonic cancer with a sensitivity of 65%
and rectal cancer with a sensitivity of 42%, at 95% specificity.
Combining CEA with TIMP-1 increased sensitivity for colonic cancer from
65% to 75% and rectal cancer from 42% to 54% (at 95% specificity).

It is very convincing that combination of these markers will significantly increase the sensitivity (I expect over 95%) for recurrence/prognosis of colorectal cancer. Right now, ASCO guideline only recommend CEA for colorectal cancer, although there are a few vendors selling FDA approved ELISA testing kits for all of these markers.

[Guest]

Thanks for the replies. History tells us that there is no rush as the scans can take up to 6 months IF this is a recurrence. Also, the insurance has been really great except for the 2 PET scans he has had they have initially denied and the Dr. has had to call them before getting approval for them. He just does not think he can get one approved until the CEA is over 3.0 with several rises. I have often wondered how some can get the "routine" PET scans - maybe it is because they are Stage IV.

I would probably be a little (just a little) less worried had his CEA returned to normal after the surgery. Also, this path is just so eerily familiar down to the timing.

I will print off the info about the additional markers and take it to the onc. and ask him about them.

I have talked to him AGAIN about going to Vanderbilt, and that is really all I can do because in the end the decisions are his and I have to accept that. I really believe part of the problem is he is old school and views that as an insult to the Drs. even though they have repeatedly told him they would help set up a second opinion. Also, driving in Nashville is a big concern. We hate it!

Thanks again for the info.