Recurrance

[mistydawn_67]

Hi there.
My husband was diagnosed with stage III 5 years ago last July. He did 6 chemo treatments and I cannot remember the names of the medications now. He has been in smooth sailing and had his appointment on Friday to follow up. They told him everything looked good.
Monday we get a call that his CEA is elevated to 16.5. Upon further questioning, it was at 8 six months ago.
Here is why I am bothered - The day prior to his surgery and two months prior to treatment, his CEA was at 4. During the course of the past 5 years he was varying between 2 and 4. So this is a pretty significant increase in my mind. I am frustrated that six months ago they did not say... "Oh I wonder why this sudden spike?" and have him follow up accordingly. What's done is done and we cannot go change it.
Our insurance will not allow a PET scan, so next week he is getting a CT chest, abd, and pelvis with contrast.
I remember the talk a long time ago and they said a 50% chance of recurrence and because he was Stage III, a recurrence wouldn't be good....
Thoughts? Comments? Experiences?
Thanks

[Deb m]

My first thought when I read your post was that it is unusual to have something show after being clear for 5 years. Usually when you make it that far your in the clear.

Hoping for the best outcome. Perhaps something else is causing an increase in your cea. Hang in there.

deb

[DarknessEmbraced]

I hope that your husband has good results with his ct scans!*hugs*

[lpas]

I'm so sorry you're having to go through this. I know from personal experience how stressful worries about recurrence can be.

It would be helpful to know a few more details of your husband's initial diagnosis. For example was his cancer in the colon or rectum? If colon cancer is going to come back it tends to happen a little more quickly than with rectal cancer (although there are exceptions). How many of your husband's lymph nodes were found to be cancerous with his initial surgery? That also impacts the likelihood of recurrence. When was your husband's last scan? On the positive side, you should know that very late recurrences tend to indicate a less aggressive cancer, with better 5 and 10 year survival odds.

Wishing you both best of luck with the upcoming CT.

[ramg_sg]

I am sorry to hear this and I hope & pray he comes clean. CEA is just a Antigen, it could be elevated for a number of reasons or be showing within limits for a person who has CA.

[PainInTheAss]

I am sorry to hear this and I hope & pray he comes clean. CEA is just a Antigen, it could be elevated for a number of reasons or be showing within limits for a person who has CA.

Yes, I think they chalked up the 8 as a spike within limits. I always ask what my CEA is rather than just accepting "it's good" because I've heard stories like this on here. If anything, retesting sooner would have been a reasonable next step, but I doubt they would have done a scan based on just the 8. Hopefully, it's something else besides a recurrence.

Also, my insurance won't allow a PET either, so I get pelvic MRIs to check on a node that was near my spine that lit up on my initial PET but was not removed during surgery. MRIs are supposed to be as effective as PETs and better for viewing the pelvic area since CTs mostly show shadows. Looks like my treatment killed it since my MRIs have been clear.

[mistydawn_67]

I believe he had 4 lymph nodes involved. (How does one forget that stuff?) He had a CT scan 7 months ago that looked "good". His cancer did not involve the rectum. Started in his appendix and they said was a very aggressive ca. He has been having a lot of unexplained back pain bilateral. He has his CT on Friday.

[mistydawn_67]

Hi everyone! Sorry I have not checked in.. life is a whirlwind.... My husband's CEA was at a 27.7 and we FINALLY got a PET scan.... Liver and lymph node mets. We did go to MD Anderson in Houston and he seems positive to think that this can be put into remission and has had similar patients in remission for over 10 years. He is now on Avastin, Fluorouracil CIV, Irinotecan hcl, Leucovorin calcium, Oxaliplatin per recommendation of his physician in TX. His plan is to really hit him hard initially and then see if we can maintain "cruising altitude" down the road... If the chemo doesn't kill him first.
He had the 1st on 5/30, neutropenia the next round so no chemo. Again the following week...PA would not give Neupogen, but we have that straightened out now. We return to TX Sept 1st for follow up blood work and PET scan as well as doctor appointment.
The chemo's knock him out for 3 or 4 days. I know this will only get worse.

[mistydawn_67]

"It would be helpful to know a few more details of your husband's initial diagnosis. For example was his cancer in the colon or rectum? If colon cancer is going to come back it tends to happen a little more quickly than with rectal cancer (although there are exceptions). How many of your husband's lymph nodes were found to be cancerous with his initial surgery? That also impacts the likelihood of recurrence. When was your husband's last scan? On the positive side, you should know that very late recurrences tend to indicate a less aggressive cancer, with better 5 and 10 year survival odds."

It was initially in the colon at the iliocecal junction.

[Lee]

All the best to your husband. MD Anderson is a top notch hospital. Sounds like he will be in good hands even if treatment is done local.

Lee