Elevated CEA protocol - 1273778

jenhikes
Posts:8

My mother has been treating with an oncologist for approx. 9 years as a f/u to breast cancer which resulted in a lumpectomy. She had CEA marker checked every 6 months. CEA level has been consistently around .5 then it went up to 1.3 in Nov 2014, by April 2015 it was at 4.4 (she smoked, but quit 30 years ago). Her oncologist told her to come back in a year that she was all clear. She became symptomatic Nov. 2015 and a chest xray was ordered which showed a mass in her right lung, by this time her CEA was 99 and she was diagnosed with stage 4 lung cancer, met to brain. Her oncologist tells us the CEA marker increase was within normal limits and so he did not follow up after the increase. I feel some imaging should have been done. What is the proper protocol in this case? Any answers are greatly appreciated. Thank you.

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Reply # - April 26, 2016, 11:37 AM

catdander
Posts:

Hi jenhikes,

Welcome to Grace. I'm very sorry your mother has been diagnosed with this. I know it must be a horrible shock. Unfortunately CEA levels nor any blood test is used to detect lung cancer. The main reason lung cancer is caught so late is symptoms often appear only after its left the lungs. CEA tests in general are good at tracking how well treatment is working in colon, bowel, and esophageal cancer. The following link is to a very recent short video discussion on the subject. http://cancergrace.org/lung/2016/01/27/gcvl_lu_serum_tumor_markers_lung…

Let us know if we can help otherwise.
All best,
Janine

Reply # - April 26, 2016, 12:19 PM

jenhikes
Posts: 8

Thank you Janine. I am looking for what the proper protocol is when CEA is rising. Her rising level was ignored. You are right, it was not caught until late stage because she was not symptomatic before then. I feel that if her rising CEA level would have been investigated further it could have been caught much earlier and she might have had a chance at survival. Just a simple chest xray even.

Reply # - April 27, 2016, 06:42 AM

JimC
Posts: 2753

Hi jenhikes,

I understand your frustration, and I am sorry that your mother's lung cancer was not discovered sooner. Unfortunately, a large percentage of lung cancers are not discovered until they produce symptoms, and at that point the cancer is usually at an advanced stage. That was the case with my wife and many others here at GRACE.

Typical practice might dictate follow-up when CEA levels are significantly elevated. Until the April 2015 test, your mother's CEA levels were well within normal ranges, and even the April test result was only slightly elevated. There is an art to the practice of medicine which requires interpretation and the application of judgment by physicians. In this situation, her doctor apparently did not believe that the level was elevated to a degree that suggested follow-up. In addition, he was looking at CEA levels to see if there was a recurrence of her breast cancer, as CEA may have value for follow-up of existing cancers but not as a screening method for new cancers. In fact, her breast cancer had not recurred, and a slightly elevated CEA would not normally be indicative of the presence of a new lung cancer.

I understand that this is an academic way of answering your question, and that nothing I say takes away the pain of this new diagnosis or the wish that something had been done along the way to discover it at an earlier stage. I know from my own perspective, having been caregiver to my wife during her battle with lung cancer, that thinking retrospectively, second-guessing decisions that were made, is very tempting. The paths not taken always lead to better results, because we fill in that blank ourselves. Low resolution as they are, there's no certainly that a chest x-ray would have imaged a much smaller tumor, and no way to know if cancer cells were already in the blood stream. I wish that you could have the peace of mind of having that knowledge.

My best wishes to you and your mother.

JimC
Forum moderator

Reply # - April 27, 2016, 07:24 AM

jenhikes
Posts: 8

Thank you for your response Jim. I am beyond frustrated and downright angry. At the time my mother's CEA level started to increase she was seeing her oncologist every six months, when her CEA level was elevated and flagged by pathology as above normal, her Dr. told her she was all clear and she did not have to return for 12 months. It just doesn't seem right to me. I just feel some monitoring should have been done.

It is too late now and she is having a terrible time. I should stop second guessing and move forward but it is so hard when I see her suffering. Thank you again, your reply does help me and I am sorry for your loss and what you went through with your wife.

Best wishes for you as well.

Jennifer

Reply # - April 27, 2016, 08:42 AM

cards7up
Posts: 636

The problem with CEA levels is that there are many reasons they can rise and they're not all related to cancer. This is why CEA levels are not used in most cancers unless a person is being treated and your mother had stopped treatment years before He said she was all clear for the cancer that he was following her for and she was. Those levels as already mentioned are still considered normal. Was she seen in that five months by her PCP or any other doctor that would've done blood tests? Or was it when she had symptoms that it was checked? Was it the same doctor or was she diagnosed by a different doctor? I would not expect my LC oncologist to be testing me for breast cancer or any other cancer. This is a hard situation and I can understand your anger. There was just no way to know it could be LC.
I hope you let it go because it's not going to change the situation now. Get her through her treatment and pray that all goes well. Did they test for mutations? It doesn't seem like she has a large cancer load, so she could respond well to treatment. Wishing her the best.
Take care, Judy

Reply # - April 27, 2016, 01:41 PM

jenhikes
Posts: 8

Thank you Judy. I just find it hard to swallow. Her CEA had tripled in 6 months and flagged by pathology but her oncologist ignored it. If he was not interested in CEA levels then why test for it? I'm not a Dr. but if a pathology report is flagged as above normal, it should be discussed and followed up on, not tell the patient to come back in 12 months instead of every 6 months as she had been doing. There was no way to know it was LC but it should not have been ignored either. She did see her PCP ultimately when she became symptomatic who referred her right back to her oncologist after imaging was done.

They did test for mutations but did not find any that could be used for any targeted therapy. She is not tolerating chemo and she has decided not to have anymore. We will keep her comfortable. She feels let down by the medical profession. She did everything they told her, always followed up, did all diagnostics and she ended up with advanced Stage IV adeno before it was on anybody's radar.

Reply # - April 28, 2016, 05:15 AM

cards7up
Posts: 636

Are you in the US? Labs as in blood tests are not usually processed in pathology, so wonder why they'd be involved? It's not just one blood test that they use in follow-up, so if other parts of the test seemed normal
and the CEA was still in the normal range, then that's not a true indicator of a problem. As already mentioned, CEA levels rise for all kinds of reasons and not all cancer related.
Since her breast cancer was so long ago, without symptoms there would be no way to know. Her PCP could've ordered a chest xray but there was no reason to until she developed symptoms. It was my PCP that had ordered my chest xray as part of a yearly physical and that's how my cancer was discovered. Except the xray only picked up one tumor and I had two.
So are you saying the onc she saw for breast cancer will be the one she sees for lung cancer?
Unfortunately for many especially with lung cancer, by the time it's discovered it has progressed to stage IV.
I don't think 6 months would've made much of a difference if she was dx with stage IV, it was probably there for a long time. It sounds like her type is adeno. Have they thought about trying an immunotherapy drug?
She has a a very low tumor load if it's only one tumor in the lung and one in the brain. Did they radiate the brain met? So sorry she's decided on no more treatment especially with a low tumor load. It might be something you'd want to discuss with the onc about a different treatment. How old is your Mom?
Take care, Judy

Reply # - April 28, 2016, 08:21 AM

jenhikes
Posts: 8

Judy, I misspoke, the lab (not pathology) flagged her CEA as elevated with a big red exclamation point next to it. Her breast cancer onc was going to treat her for LC too but I brought her up to Ohio where I live and she is seeing a LC specialist at the Cleveland Clinic. I would like to believe that if this had been caught six months earlier it would not have made a difference and let go of the anger. This is why I am here, to get to that point. She was hospitalized two times after her first round of chemo and opted for a second round (1/2 dose) and now can barely walk due to leg pain. One nurse at the hospital told us the chemo would kill her before the cancer did - she said go get some pot and don't do anymore chemo... We discussed immunotherapy as well but were dissuaded when told that there is a low success rate and the side effects can be very nasty. My mom is 72 and extremely sensitive to any meds and if there is a side effect, she seems to get it. She had two tumors in her brain that were zapped with gamma knife radiation and that worked very well. So far so good on the brain met. We are trying some alternative therapy at this point. I want her to live the remainder of her days with the best quality of life she can.

It sounds like treatment is working well for you and I wish you all the best!

Jennifer

Reply # - April 29, 2016, 02:14 AM

david
Posts: 14

Hi, I have watched this thread with some interest, hope you don't mind me adding. Cancer grace does a great job in helping us with cancer. From a number of posts it is clear that many people require help to get a timely diagnosis. Like Jennifer's mum, I believe that important signs were missed. If a blood test is flagged, surely it is flagged for a reason and should not be dismissed even if cancer is not suspected. I had a lot of flagged blood results that were put down as being OK for me. I just wish there was somewhere I could have got help from. It is not the place of cancer grace to provide this service for many good reasons. I just wish that there was the golden test that picked things up early or at least for any abnormalities in today's tests to be explained as to why it is fine to ignore them.
I am sorry for your mum Jennifer and the frustration you have I share.

To cancer grace, thanks for everything you do.

Reply # - April 29, 2016, 07:31 AM

jenhikes
Posts: 8

David, Greetings and thank you for adding your input. I'm beginning to realize that Cancer Grace may not be the place for me to have looked for an answer to my frustration but I am glad I did anyway, as the responses I have gotten have been helpful. It sounds like you understand and I am sorry you have had a similar experience. Early detection is the key to cancer survival and hopefully one day we will have that "golden test." I still do not think it is okay to ignore abnormal test results and I told my mom's onc just that, so maybe the next time he has a similar situation he will follow up. If it helps the next patient, I did some good.
All the best to you David.

Reply # - April 29, 2016, 07:47 AM

catdander
Posts:

Hi David, It's good to see you! Thanks so much for adding to the thread. We always appreciate input from others.

It's not so much out of our wheel house to discuss this but more that blood test are horribly unreliable at picking up most cancer including breast and lung cancer. Not only that but it also is unreliable at picking up something that isn't cancer. These blood tests are most often either false positive or false negative. This is why no one here will say anyone should have followed up with this blood test, it isn't standard of care or used in followup in this type of case.

As a lay person of reason and having said the above, it seems that if a doctor uses this test (because from my position at the computer it appears there are doctors who use these tests for more than they are appropriate) for long term follow up it stands to reason they would...follow up.

I agree with everything Jim said in his first post. I have had to deal and still do with my share of knowing today what I didn't know then. We never know what would have been and it could very well be that this course was already afoot before the test in question.

I hope your mom does well for a long time and I hope you find peace.

All best,
Janine

Reply # - April 29, 2016, 11:03 AM

JimC
Posts: 2753

I would just add that in my experience blood test results are flagged automatically...if a value is outside the normal range, the flag pops up in the report. Whether that value's variation from normal is significant is subject to interpretation by the patient's medical team.

It's one of the issues which complicates lung cancer screenings. Low dose scans will reveal small lung nodules in many patients, the great majority of whom do not have and will not develop lung cancer. If all those findings are followed up with biopsies and other procedures, risks, worry and expense are increased, often needlessly. As a result, the reviewing doctor must exercise judgment in deciding on the appropriate follow-up.

JimC
Forum moderator

Reply # - April 29, 2016, 12:59 PM

jenhikes
Posts: 8

Thank you, Janine. I am working towards finding peace and our discussion here is helping.

Jim, I wholeheartedly agree. I am not for needless screenings and diagnostics that just put people in a panic. I guess one weighs the pros and cons. In the nine years following my mom's breast cancer, not one chest xray was done, or low dose CT. I do think it should have been done, but apparently it is not protocol for breast cancer survivors.

thank you all for your feedback!

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