I want to know!

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I want to know!

Postby joy » Sat Mar 18, 2006 11:18 pm

????????? - I always have lots of ????????

I was diagnosed after surgery (originally I went into the surgery with a benign diagnoses from the biopsy taken at the colonoscopy --- obviously a mistake) stage III 2 lymph nodes involved.

Given the original misdiagnosis I'm looking for the most reliable diagnostic tests to get after my Chemo/radiation is completed to see what the "true" extend of the involvement is.

I have had the following:

CAT scan-
Chest X-ray-
ultra sound -
General blood work -

Now I'm woindering if after all the Chemo/radiation is done --- what tests should I have

I've heard about a PET scan but I don't think that this is standard in Canada _ I would probably have to pay $2,500.

CEA - available but doctor says usual "protocol" - before surgery?

I'm willing to go to the US and "pay" for every test if they are necessary/useful tools to try and keep a "Heads-up" on this.

Opinions and advice gratefully acceped :shock:

Posts: 347
Joined: Wed Dec 14, 2005 10:04 pm
Location: Seattle, Washington


Postby ASTEPHENS33 » Sun Mar 19, 2006 2:23 am

I think one of the hardest parts of this disease is what you touched based on - how do you really know if you have the cancer or not?

One thing that I didn't understand from your post was the "misdiagnosis" in the sense that if the colonoscopy was "benign" - why did they do a colon resection? Was the polyp too large for them to remove through the colonoscopy? Just wondering.

That being said, I had a colonoscopy where one of the polpys removed was cancerous and so they did the resection to be sure. I had all the tests you mentioned before the surgery, as you did, and there was no evidence of cancer found, yet the biopsy after the surgery showed 1 out of 33 lymph nodes found.

This came from another forum that I thought was a good explanation of CT and PET scans, but can't verify the accuracy of it. "As a radiologist, we would only call a lymph node abnormal on at CT scan(likely involved with cancer) if it measured greater than 1.0 cm in size. That meant we missed identifying many lymph nodes as cancerous because they were less than the 1.0 cm size criteria. The addition of PET imaging allows us to be more accurate in determining lymph node involvement since many cancerous nodes can be less than 1.0 cm in size. The PET imaging also allows us to determine response to chemotherapy. Regions that were previously HOT and then turn cold (no longer BRIGHT on the scan) are indicative of tumor kill or resolved inflammatory reponse. "


Postby joy » Sun Mar 19, 2006 9:31 am

I'm not upset over a miss diagnosis - my surgeon is "the best" - the tumour was 3cm - T3N1MO. He did a wonderful job of making sure that it had clear margins.

I guess I rambled a bit too much. What I really want to know is after this is all over is it a good idea to go get a PET scan?

I will not be offered a PET scan in Canada in the province of Ontario as part of the Health Plan - but I am willing to pay to have it done in the US if this is a useful tool to tell if I am free of disease, and to help monitor any possible reoccurrence.

I can get a CEA in Canada but it is not administered on a "I want" basis it can only be done using the protocol of our Health Plan.

Ontario Health Insurance Plan is good --- but it does have limitations because it is driven by government monies.

I sometimes wonder if I am getting the "best" treatment available or the "most cost effective" treatment available.

We live in Naples Florida for 6 months per year 8)


pet scans

Postby sue » Sun Mar 19, 2006 10:50 am

I hope this doesn't confuse the issue further. I had 7 nodes that were positive removed during my surgery. Then, I had a cat scan after my surgery which showed an enlarged lymph node near my aorta. I then had a pet/cat combination scan to try to determine if it was cancer or just reactive. Even though the pet scan is considered the best imaging study, it was still inconclusive because the node showed up as "having uptake but not a hot spot" So even my pet was inconclusive. I did have to get pre-approval from my insurance co. for the pet scan. It was importent for me to determine if it was a met or not because my protocal would be different (I would add Avastin) Anyway, that is what I did. I added Avastin to the protocol.

After 1/2 my chemo treatment I had another cat and the node was normal. Either it was never cancer at all or it was taken care of by the chemo. I'll never know.

As far as cea goes. It is best when they have a reading pre-surgery, but it is a very unreliable marker while you are on chemo. My doc says he has seen it climb as high as 8 just from treatments. He checks mine each time and it does go up and down.

I hope this helps. Best of luck Sue

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Joined: Mon Dec 26, 2005 5:32 pm
Location: maine

Postby Dot » Sun Mar 19, 2006 9:38 pm

Hi Joy:

Like you, I too wonder what the most reliable test will be for my husband after he completes his chemo.

When he first started with symptoms in March 05 the cat scan done did not show the tumors in his liver or his colon. It was not until Oct 05 that he was admitted to the hospital so he could get a colonoscopy as an inpatient that they found the colon cancer in his right colon. Surgery 2 days later to remove his right colon and they removed 33 lymph nodes. Two of the lymphnodes came back positive. (they were checked by a pathologist) During surgery the surgeon found 2 tumors in his liver. These never showed up originally with a cat scan or were not seen. He had a bone scan before starting chemo. The bone scan was clear. They said that if the bone scan showed anything then he would not be a canidate for liver surgery to remove the tumors. He is to get cat scans every 2 months while on chemo. His second set was done this past Friday. I asked about getting a PET scan and was told we could, but that too was not always reliable. A negative reading does not mean you are cancer free. He has had CEA levels drawn. Before starting chemo it was 14.1. After starting chemo the level continued to drop to a 4.7 in Feb 06. Then for some reason it went back up on Mar 1st to 5.1.

To date, I cannot get a Doctor to say any test is 100% reliable. When he is declared cancer free, I will ask for CT scans, PET scan, Bone Scan and a CEA level. I have gotten pretty savy about all of this and I think I could argue my case to get them done. I am sure he will be getting colonoscopies frequently once this is all done.

The only other thing I would like to get him started on is the vaccine called Trovax. (check out the other messages about this.) But, this is not available in the US right now. Studies being done in England for colon cancer patients.

My hope is that research will continue to find a more reliable test to monitor for return of cancer.

Keep up the fight!


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