CEA

[li001sp]

Hi so I go back to my Oncologist in 2 weeks and I'm so frightened. I haven't seen him since May and he wanted me to have another scan but I chose not to because my daughter was turning 18 and graduating from high school. I was on such a high and now I'm on a downward spiral. My CEA in May was 199. I'm so afraid to see what it is now. I know I'll have another scan. At that time I had a 4MM node on my liver. Which would mean that I'm stage 4. I'm so scared. I don't want to do chemo again. I haven't felt this good in years and boy I'd love for it to be nothing. It can't get any better then how I'm feeling now and would love for that to mean something.

Your thoughts would be appreciated.

Lisa Stage III rectal cancer survivor.

[mstults]

If I was your doctor I'd kick your ass. You need that scan. And then you need to follow up on it. Don't put it off.

[Mommato4boys]

You can call your oncologists office tomorrow and still be able to get the scans rescheduled prior to your follow up in 2 weeks.

[Bev G]

Hi Lisa,

Well, I wouldn't kick your ass, dear. Why shouldn't you have delighted in your daughter's graduation and her 18th birthday? Those are life events that will only come once for her, and for you. Is it a CRC met on your liver? Maybe. Maybe even likely, given your previous scan and your CEA. CRC generally grows fairly slowly. Have you missed an opportunity you are not going to get? Almost certainly not. I applaud you for living your life, and I will applaud you equally if you call your onc in the next couple of days, get your scan done, and get in to see him/her in the next week or so (or whenever your scans are done). Of course you don't want to go back on chemo! You'd be psycho if you did!!!! But if you need to, you'll find the strength and courage to do so, because that's what we do. Your eighteen year old daughter will become a wife and mother before you know it...I know you'll want to be around for that. I bet you thought, at least at one point, that you would never get through chemo the first time around (I sure did). But you did it. You own that accomplishment, that knowledge of your bravery and resolve. It's yours, and it didn't go away. You CAN do it again. I don't know you, but I DO know that. Because that's how we roll.

((((Lisa))))

Bev

[li001sp]

Bev thank you. That prior response put me in tears. My doctor was OK with me seeing him in July because of the upcoming events in my daughters life. My daughter suffered a traumatic brain injury in a car crash prior to me starting chemo. Yes, the met on my liver is from CRC but at the time that I was scanned it was inconclusive because they couldn't quite see it. But, what else could it be since my CEA is spiking? I don't want to do chemo again and feel the way I did. I lost over 20 pounds of which I can't afford to lose. I feel that if I have to go back on chemo that is what will do me in not the cancer. My doctor had said to come in and see him in July have the blood drawn and then scan. Do you think that's OK?

[mstults]

I didn't mean to be overly harsh. And I know there is no way you would or should miss your daughters graduation. But, did I understand correctly that Dr told you to get a scan? It will only take a few hours for that. Wouldn't you feel better knowing whatever it is than worrying about what it is plus worrying that you need the scan? Sometimes we just need a little motivation. That is all I wanted to do was provide a bit of that motivation. If its only one spot you stand a good chance of being a surgery candidate. I put off getting a colonoscopy for years trying to convince myself it was something else. How many times I've wished I'd got that colonoscopy. As far as chemo, you can find the strength to do it if you have to. It's not easy but its worth it. Sorry if I offended.

[AJS]

Lisa,

I agree with Bev. Good for you....living life and celebrating life's milestones. That is as it should be. I probably would have put off a scan (temporarily) myself. But now is the time to get that scan back on the schedule. I don't like getting scans but I get them every 3 months. Better safe than sorry (for me anyway). I am back in chemo for the 4th time and if it wasn't for those pesky scans we have to have, the 2nd and 3rd recurrence would have gone unnoticed for a who knows how long. CEA isn't the way to monitor me, unfortunately. So I am thankful for the scans. We are all stronger than we think. I never would have dreamed that I would be on the receiving end of chemo for the 4th time but you find the strength and determination to do it one more time. Which chemo did you do? Maybe there would be another chemo that wouldn't be as hard on you IF you have to do chemo again.

I just saw your newest post and if your doctor is good with blood work first then scan.......go with it. Your appointment is coming up soon, right? We all have to do what works best for us. Good Luck!

Angie

[luvmymom]

Bev thank you. That prior response put me in tears. My doctor was OK with me seeing him in July because of the upcoming events in my daughters life. My daughter suffered a traumatic brain injury in a car crash prior to me starting chemo. Yes, the met on my liver is from CRC but at the time that I was scanned it was inconclusive because they couldn't quite see it. But, what else could it be since my CEA is spiking? I don't want to do chemo again and feel the way I did. I lost over 20 pounds of which I can't afford to lose. I feel that if I have to go back on chemo that is what will do me in not the cancer. My doctor had said to come in and see him in July have the blood drawn and then scan. Do you think that's OK?

Like many others on here, my mom had IBS symptoms for years before she mustered up the courage to go in for a colonoscopy. Something I've learned from all this is never to beat ourselves up for things we did or didn't do; just to move forward and fight the best we can, because the future is all that we can change, and all that matters.

There's some balance between fighting cancer and living life. We canceled my original wedding ceremony in India due to mom's diagnosis and surgery--but on our second attempt to schedule a (much smaller) wedding in the US, my mom delayed her first chemo session a little to accommodate it. You do what you feel is right at the time, as you did.

I'm not a doctor and I haven't gone through chemo myself, but I believe weight loss issues can be managed. My mom lot a lot of weight before diagnosis, after surgery, and during radiation. But she has not lost weight on chemo, and in fact has probably gained a bit. She has a dietician available to consult (though she does not like to for whatever reason). Protein drinks like Ensure have helped.

It may help to remember that fundamentally it's always your body. If the chemo becomes too much, you and your oncologist can decide to cut the dose, try different regimes, or go on a chemo break. Or you can refuse the chemo entirely. But before you can decide how to move forward, you have to know what you are dealing with. Best go find out.

I am so happy you got to go to your daughter's graduation!

Much love.

[dianetavegia]

You would be Stage IVa, which is not the same as being dx'd Stage IV.

Don't freak out too much about the liver met. That's VERY small and there's still a huge chance of a cure for such a small met. I had a 1.5 cm liver met removed 14 months ago and my energy is through the roof. NO follow up chemo because studies have NOT SHOWN that it increases survival or helps in any way.

present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy

Here's some links:

http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460

http://www2.mdanderson.org/depts/oncolog/articles/11/4-5-aprmay/4-5-11-2.html

[michelle c]

Hi Lisa,

I can understand how frightening it can be. Please have your scan. Not knowing what's going on can sometimes cause more anxiety than knowing. A small liver met, like yours, can be surgically removed depending upon it's location and chemo may not always be needed. Please have your scan and bloods done and then see your onc as planned. If you find it difficult, then do it for your daughter, you want to give yourself the best chance to beat the cancer, so you can be here for her. You can do this Lisa, and we are behind you!

[li001sp]

Thank you all. My doctor is on vacation until Monday 7/8. I will call on Monday and get my scan unless he says to wait and see him on Friday 7/12. I'll keep you all posted.

Happy 4th of July to you all. We're ALL survivors!!!!!!

[David Losh]

I'm curious about the CEA, because I don't really know what it means, or what the gauge is.

When I started my FOLFOX my CEA was 1100. I guess it was floating around that when I was diagnosis. After five treatments the CEA dropped to 580, and now at 9 treatments it's at 360. My tumors are shrinking slightly.

I take it this is a gauge of tumor activity, and the best way to reduce that activity is with surgery. Because of my over all physical condition, which has greatly improved, surgery has been delayed until after the FOLFOX. The surgeon however was the most encouraging doctor I talked to.

So what's the deal about these 1.5 readings to 3 or so on. I take it 1 is normal activity, and 0 is better. So we go after all the tumors, and when they are gone we have the low readings?

[Bev G]

Hi David,

I'm sure you've gleaned here that CEA is really a crummy marker for a lot of people. If the CEA is low at diagnosis, and there is a lot of tumor mass, it's likely not going to be much of a marker. Then, there's the problem of all the other stuff that can raise CEA that is not cancer related (inflammation, infection, GI irritation, +/- chemo) that nevertheless scares the crap out of people, then there are the teensy changes in CEA that scare people to death, but shouldn't (ie changes to the right of the decimal point), then there is the intrinsic variability of lab tests themselves (ie the same sample could be tested in the same lab three times in the same day and yield three different results, all +/- several %). In general terms, fetuses and some tumors tend to secrete CEA. In general terms, CEA levels MAY reflect tumor volume. Your initial CEA was indeed quite high, and it has come down A LOT, almost undoubtedly because of tumor shrinkage from your chemo. It is almost non-existant to learn that chemo has cured stage IV disease, unfortunately. It's been reported a couple of times, but is really nothing to count on. That's why surgery remains the "gold standard". I hope that through your chemo you may become a candidate for surgery. That would be wonderful, and we would all rejoice with you. Keep at it!

All the best to you,

Bev

PS Very impressive resume you have!

[David Losh]

My oncologist is actually pretty funny in the way he interacts with me. From what I read, yes my initial CEA was very high, but my CT scan doesn't look that bad. My thinking is, and what I understand is, that my tumors were growing fast. I don't know if that is the case, but they are shrinking slightly now. The conclusion I've come to, which is not scientific at all, is that the CEA is an indication of tumor growth.

The most I'm looking for is stable, but would like to see some of the smaller tumors gone. I'm just grateful that my chemo is going well, and that it looks like I'll get through the full FOLFOX regimen.

[jscho]

Hi David, in response to:

I'm curious about the CEA, because I don't really know what it means, or what the gauge is.

A number of years ago I too wondered about the CEA, and looked up information on its biology and use in cancer diagnostics. This is what I found:

CEA is a fairly large macromolecule that is expressed in epithelial (surface lining) cells. It is made inside the cell and transferred to the cell surface. Our understanding of its role in biology is evolving, but it appears to play a role in binding and trapping bacteria to prevent them from invading the epithelial layer. Since the gut is where bacteria live, that is where most of the CEA expressing cells reside. Since bacterial invasion also can trigger an immune response releasing chemical messengers signaling inflammation (cytokines), the presence of cytokines can stimulate the expression of CEA in cells.

Another mechanism of stimulating CEA expression is via the HIF-1 transcription factor, which is present in situations where cells are under metabolic stress, such as when they lack sufficient oxygen for normal oxidative metabolic processes. When little oxygen is present, cells react (via HIF-1) by making more receptors for vascular development (more blood vessels), release signals to promote growth of vessels (VEGF), upregulate the enzymes involved in the production of lactate (switch to lactic acid fermentation), and move more glucose transporters to the cell surface to bring in the extra glucose needed. Apparently, HIF-1 release also leads to the production of more CEA in epithelial cells since it is also a transcription factor for CEA. Thus, it may be the unusual metabolism, low oxygen concentrations and acidic environment, inside cancer cells that leads to the over-expression of CEA. If something in the HIF-1 transcription pathway to make CEA is mutated, the cancer cell may not over-express CEA. Hence not all tumors can be detected by CEA levels.

Normal epithelial cells actually do express CEA and have these molecules on their surface lining the inside of the gut. As bits of the cell membrane get sloughed off, the CEA does not enter the bloodstream but is pooed out. Thus, the CEA level in normal blood is quite low. Since abnormal epithelial cells are irregular and not oriented in the same way, there are many areas on the surface where the CEA are attached as well as spaces between cells. This porous environment allows the CEA molecule to enter the bloodstream. Since the liver is highly vascular, tumors in the liver lead to high CEA levels in the blood, and are thus more easily detected. In other locations, the effect is not so dramatic.

Apparently, in the 1980s, the elevation of CEA was the first indication of recurrent disease in around 80% of cases.

Because of the differences in blood level CEA in normal individuals due to differing levels of inflammation (in the epithelial layers of the colon, esophagus, gall bladder, duodenum, etc), I think it is best to not look at absolute CEA numbers but rather trends, as Ed's and Ivona's oncologists do. As also pointed out above, there is also the possibility of human and sampling error. Although very high CEA number is obviously a good indicator of problems, it is more the fluctuations that matter. If the likelihood of positive and negative fluctuations about a mean is symmetric (most likely true), then the chance of having "k" increases is (less than) 1/2**k if there is no underlying cause for the trend. So, if you have 3 consecutive increases in CEA level (4 readings), there is only a 1 in 8 chance that there is no underlying cause, though the cause otherwise indicated may not be cancer.

Hope this is helpful. Good health.

Jeremy