Feeling scared CEA levels are up 7.4

mp327 said:

Brendaklein

To my recollection, a CEA test is not a reliable marker test for anal cancer, but can be used to possibly detect other types of cancer.  However, an elevated CEA does NOT mean a person has cancer.  It is used to determine if further testing should be done.  I hope you will not panic about this and that retesting shows everything to be normal.  Please keep us posted.

UGH, I have another blood test on Sept.9th. I will let you know. Thank you very much.

carrienjason777 said:

Brendakleinbut

Hi! I posted to this site 4 years agai with the same cause.. extremely elevated cea. At the time mine was 21.3 at its highest if I remember correctly with lowest at that time of 18.5 (or 185 in other measurement that some use, just for clarification)! I didn’t have any diagnoses really at the time other than ovarian cysts and emphysema/copd which will cause it to rise, but my dr said it shouldnt go anywhere above 12.0-13.1 or so with those conditions. They said that 18.0 is considered to be seriously abnormally high and indicative of something, although they weren’t sure what. So I’ve Been through the ringer with all kinds of specialists and tests, but cea is normally indicative of gastrointestinal, gynecological and a less occurrence of pulmonary issues as a standard. Sure it can be affected by other things, but those occurrences drop significantly in relation to the afore mentioned 3, BUT they do occur sometimes, just as they always say that cea by itself is not indicative of a serious issue except in some cases, and if it’s above 18.0.

so after 4 years of searching even though I have been diagnosed with the following diseases and conditions, they are still unsure of the exact cause of the cea although they do say at times that it’s likely due to flare ups with some of the conditions I have and at other times they’re concerned as to why it’s so high, which is confusing to say the least. So if it is in fact due to flare ups (which a few of my 12 drs seem to think there is an undiagnosed reason for it), maybe these diagnoses I have been given may help you to know which direction to go in.

Rheumatologist and gi both diagnosed me with pbc just recently (primary biliary cirrhosis), raynauds syndrome, and another autoimmune which acts like autoimmune arthritis but is NOT rheumatoid but I can never recall the name. Then rheumatologist and immunologist diagnosed me with a form of pidd (primary immunodeficiency disease) specifically cvid (common variable immunodeficiency) in which I am bout to start immunoglobulin therapy treatments. I also have a pituitary tumor which they don’t believe that it’s cancerous at this time due to it slowly and not rapidly growing, and that tumor wreaks havoc with my endocrine and gynecological hormones and functions. In addition to worsened and now stage 4 emphysema/copd/ chronic bronchitis, I have a noncacified Edison on my lung which is due to be checked in next couple months. 2 of my drs (rheumatologist and pulmonologist suspect something called polycythemia Vera (which is explained to me as a myeloproliferative disease) but hem-oncologist has to check for that to get a specific diagnoses when I return to him in a couple months. I seem to be having some gallbladder issues as welll and have that checked this week.

i know this is a lot of information, but my body is literally falling apart it seems and like I said they still can’t offer a reason as to why such a high cea level, especially with a negative pet scan. But I still go regularly to all the different specialists and they still regularly put me through the ringer with tests so hopefully something will give a reason as to why. But I am happy that they finally have some diagnoses in which to treat, cuz for years they searched and found nothing til I started seeing the rheumatologist and she summed up a lot of it in just a few weeks therefore giving me something to look forward to in hopes of feeling better. I used to fixate and sorry why that cea was so high but have since stopped doing so and causing myself unnecessary worry and stress. Don’t get me wrong, I still was concerned and let it fuel the fact that I KNEW in my heart something was wrong with my body even though they couldn’t find it, I knew my body well enough to know that I needed to not give up and I’m glad I didn’t . So I recommend the same advice to to you- don’t fixate on that alone, although don’t ignore it, but you know your body better than anyone and if you feel like something is wrong then push and don’t stop until you have some answers. I still wonder and will make sure and mention it to every dr in hopes that someone can tell me. But I’m happy knowing that there is hope due to my not giving up and now I’ve hopefully caught the pbc and cvid early enough that treatments will help. And that’s the best piece of advice that anyone can give you-if you KNOW something is wrong then keep pushing those drs and don’t give up til you have an answer.

good luck and feel free to send Me a message anytime you like and I’ll be more than happy to answer any questions You have. hope that you feel better and well And find what you need to find! 

Thank you, my level went down to 6.4 last blood test about 2 weeks ago. I go back in Nov. for CT scan and then appts. with all three Docotrs again. I'm 61 getting use to this NEW normal is hard. I still have a lot of problems with bm's. I have to stop taking the miralax and stool softners so often. My vigina is still not well. Hurts on left side so bad we can't have intercorse. I do have the dialators but, I'm not very good at using them like I should. Any advice is welcomed. Thank you very much.