The Colon Club

Hi all,

I just joined the forum but have read up on a lot of the posts here since my diagnosis.

A little about my history.. I was diagnosed in January 2016 at 26 y/o with Stage 3A CC. I did a colon resection in March 2016 and then 6-7 months of chemo, which ended in Sept. 2016. Last year's scan was clear, except for a "spot" that they had been monitoring on my liver, which they concluded was a cyst based on a follow-up MRI and no changes in size.

I just went for my yearly CT scan this past week, and a new spot on the liver was seen again. My doctor told me that my scan is fine but that we have to keep an eye on this new spot. She recommended a CT scan in 4 months (yes, FOUR months, in February). She said that the faster test was an MRI but since the spot was so tiny, she didn't think it would give us any more info.

Since our talk, I've been going crazy with worry and thought. I'm not sure that I can wait 4 months like this. Has anyone had a similar situation? Could I just be prone to getting cysts? My CT scan also said that I had a fatty liver, could that be why these spots keep popping up? Also, I am thinking of pushing for an MRI or maybe seeing another oncologist who will do further testing without making me wait 4 months. I'm going to drive myself crazy until February. Any thoughts/comments/advice would be appreciated!!

Hi and welcome, sorry for the reason you are here.

Did they check your CEA? Is it a good marker for you? Do you know if your cancer was well defined, or moderatly differetiated or poorly differetiated?

Is there any way you could get a PET scan?

Hope you get answers soon.

Lee

I had a 4mm lung nodule found in my scan last may. Since I have scarring and inflammation in my lungs my oncologist and pulmonologist both felt is was not a met. Although my pulmono!ogist did throw out the possibility of a new lung cancer. However it is too small to biopsy and pet scan will not be able to pick up. So had to do repeat in 3 months, as she said cancer can double in 3-4 months. The wait was hard. The repeat scan showed no change which was a good sign. Will repeat again in 6 months.

My point is I understand your worry. All you can do is try to be positive as spots can show definite characteristics that will be reported as likely cancer in the scan results. The fact it's non specific at this point is in your favor. Hopefully you can try and stay positive and not worry too much the next 4 months as hard as I know it is.

Lee wrote:Hi and welcome, sorry for the reason you are here.

Did they check your CEA? Is it a good marker for you? Do you know if your cancer was well defined, or moderatly differetiated or poorly differetiated?

Is there any way you could get a PET scan?

Hope you get answers soon.

Lee

My CEA has never been a good indicator.. even when I had the tumor it was within normal range. It went up from 0.9 to 1.0 in 3 months? (I was at 1.3 at the time of diagnosis) I don't think that means anything, right?

My doctor never mentioned a PET scan at all. Only an MRI and/or CT scan in 4 months...

Lee wrote: Do you know if your cancer was well defined, or moderatly differetiated or poorly differetiated?

My tumor was poorly differentiated

Hello, My husband also has a fatty liver and had cysts show on his ct scans. He also, throughout his five years of surveillance ct's had cysts show up on his pancreas and kidneys in addition to his liver. I do think that some people are prone to them and our oncologist told us that the older you get, the more you will develop. Of course I worried myself to death every time they say they saw a new one, even when they told me they were sure it's a cyst. Our oncologist at MDA told us that cysts take on a very different look than tumors, hence he was always very sure they were cysts. I would think that checking your CEA would be a important thing now. Has you cea increased? I know how hard this is for you now. Know that I will be hoping and praying for the best results for you.

deb m

Bina wrote:My doctor never mentioned a PET scan at all. Only an MRI and/or CT scan in 4 months...

If it is too small, a PET scan may not be able to pick it up. For some people who do get a liver met, yes sometimes the CEA will go up. Maybe something to consider. When was your last CEA?

As others have said, may just have to wait it out. See if you Onc is willing to redo in 3 months vs 4.

Good luck,

Lee

Lee wrote:

Bina wrote:My doctor never mentioned a PET scan at all. Only an MRI and/or CT scan in 4 months...

If it is too small, a PET scan may not be able to pick it up. For some people who do get a liver met, yes sometimes the CEA will go up. Maybe something to consider. When was your last CEA?

As others have said, may just have to wait it out. See if you Onc is willing to redo in 3 months vs 4.

Good luck,

Lee

I just did a blood test last week. My CEA was at 1.0. Three months before that, it was at 0.9... I don't think a 0.1 increase is anything to be concerned about, is it?

Liver mets tend to impact CEA to a much greater extent than mets in places like the lungs or lymph nodes. Time and again I've seen posters for whom CEA was never a good marker (I'm in the same boat) get sudden big jumps with liver involvement. An increase from .9 to 1.0 is not in any way significant. I'd say chances are very good that this is something benign, especially in light of the fact that you've had cysts previously.

How often does your doctor test CEA? If I were you, I'd push for the next blood draw to be moved up, just to be sure everything is staying stable on that front. If your CEA were to jump significantly, you would have a very good case to get the MRI done more expeditiously. If possible, you should try to get your doctor to test CA19-9 as well. Although more commonly used for pancreatic cancer, CA19-9 is a good marker for some colon cancer patients (see the article below). I was able to convince my doctor to test both.

http://naosite.lb.nagasaki-u.ac.jp/dspace/bitstream/10069/16158/1/acta45_01_08_t.pdf

I know it's much easier said than done, but try hard not to worry.

Bina wrote:

Lee wrote:

Bina wrote:My doctor never mentioned a PET scan at all. Only an MRI and/or CT scan in 4 months...

If it is too small, a PET scan may not be able to pick it up. For some people who do get a liver met, yes sometimes the CEA will go up. Maybe something to consider. When was your last CEA?

As others have said, may just have to wait it out. See if you Onc is willing to redo in 3 months vs 4.

Good luck,

Lee

I just did a blood test last week. My CEA was at 1.0. Three months before that, it was at 0.9... I don't think a 0.1 increase is anything to be concerned about, is it?

My CEA is generally less than .5. During chemo got up to 1.1 then back down after I finished. My last CEA was 1.0 and I asked my oncologist if that is a concern
since it's generally less than .5. She was not concerned at all and said it is still on the very low end of normal. My lab lists normal as 0-5. So I don't think your .9 to 1.0 is anything to worry about.

So, I got my oncologist to move up my MRI to November 14.. still a little far away, but better than 4 months... I didn't get to talk to her directly because apparently she's on jury duty this week, but she relayed the message and the nurse called me. I'm going to do my best to try and stay positive and stop overthinking in the meantime. Like everyone said, it's just so much easier said than done.

I am so sorry this is worrying you. It is never easy. My husband had a completely normal CEA when he was diagnosed and he was stage 4 with 10+mets in his liver. So obviously, for some people, CEA is crap at predicting recurrence. I would ask about maybe getting a scan a little earlier than 4 months. It is very likely nothing (DH also has a cyst and it didn't change and apparently looks very different on the scans) but best to keep an eye on it until you know it is nothing.

The only way to be certain is have the tissue biopsied. We've encountered this ourselves recently. The MRI report from my husband's MRI last week says that the 2nd spot on his liver "demonstrates imaging features most consistent with a benign etiology such as a sclerosed hemangioma."

This is an interesting article on the subject:
https://www.hindawi.com/journals/hpb/2009/473591/

A lot of people have spots on liver which are simple cysts, and they are never aware of. For liver, MRI is more accurate than CT.

mpbser wrote:The only way to be certain is have the tissue biopsied. We've encountered this ourselves recently. The MRI report from my husband's MRI last week says that the 2nd spot on his liver "demonstrates imaging features most consistent with a benign etiology such as a sclerosed hemangioma."

This is an interesting article on the subject:
https://www.hindawi.com/journals/hpb/2009/473591/

So what's the plan for your husband? To just watch the spots just in case?