Tumour Markers-Yes or No
I haven't had them done to date but with treatment ending soon is it something you recommend or are doing?
Comments
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Nope.
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Pure,
My doctor's office used to do them, but he told me the last time I was in that they were going to stop because it was useless and unreliable. If I had my say, I'd never do them. I agree with Sherri.
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Useless and unreliable just about sums it up-well said Sherri!
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Then how do you flippin no? Just if pain hits and stays persistent for a period of time? Lets say you have lung mets and have no symptoms-how would you evern know? And wont they keep spreading if you don't stop them in time?
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I wonder that too, Jen. I'm seeing my onc on the 17th and I was going to ask him about the tumor markers.
Barb
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My docs don't do them. They say that they are not reliable and will just cause me stress. They tell me that they will investigate if I have pain or unusual symptoms that are consistent, persistent and worsening. I used to want some kind of test but not anymore. My docs are right. It would cause me too much stress.
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I just asked my onc at my last visit...2 weeks ago, if I was having tumor markers tested. He said yes...since July 2008! lol.
Ok.
I had NO idea! I was never nervous about getting bloodwork taken every 3 months, but now I am. Go figure. Maybe its because now I know they are checking..
Anyways, I also had my yearly bloodwork with my GP in January. Cholesterol, Vitamin D all that stuff....AND...yup...tumor markers! Again.
Everything was well within below normal range and I actually felt a sense of relief knowing all this.
I have seen many times woman on the boards saying their oncs do not run these tests for various reasons. Thats ok, its what their docs believe there is no right or wrong. Does this mean that the tumor marker tests are NOT reliable for everyone? NO.
I have seen on various BC boards and in real life who have had their tumor markers rise and then rechecked. Only to rise again and then scans followed. The end result being mets.
Again...this is my observations.
My onc doesn't scan with out symptoms and I am fine with that. I dont want any more radiation anyways.
I think for the first 2 yrs maybe to do the tumor markers if thats what your onc is suggesting. Then after that, maybe you can re disguss with your onc about doing them. I do think a baseline is good though, especially if you havent had your TM's checked before.
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My onc is another that says the test is too unreliable. As for knowing wether or not you have mets, they say that there is no difference in outcome knowing sooner than symptoms appear. You have to remember that mets are a completely different beast that the original bc. It behaves differently and is treated differently.
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Regular blood work reveals alot. Your sed rate tells about any inflammation going on in your body. There are numerous reasons for it to be elevated but if you have BC that's a red flag. Also, calcium levels elevate when cancer is active. Alkaline Phosphatase is another part of a BMP that if elevated is red flags for bone mets. If you are more anemic than usual a tumor could be vascularizing and sucking up all your blood. These are some of the tests they can use to see if you have mets... without doing scans.
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No tumor markers here either - my onc does not believe in them!
Jackie
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Pure, it is true that tumor markers, CA27/29, are not always reliable and my onco says he would not make a decision on them alone....he takes other tests into consideration also, cell search,MRI, Scans, tests where he can actually see if something is going on. HOWEVER, and this is a very big however....tumor markers have always been very reliable in my case. They were what indicated something was off when it was first discovered my breast cancer had recurred....if my original onco had done this test we would have investigated with more tests and scans and discovered my cancer before it had gone to Stage lV. When I was on aromasin and it was working and I was in remission, my CA 27/29 went all the way down to 18 from the 500's....not overnight of course, but each month the numbers went down. When they would go up, we'd do scans again even if it was early and sure enough there would be a new area or the tumors already there would have increased in number and size. So for me it is an accurate test and over the years I always wanted it done at every month becuase I am the kind of person who likes to know what it going on. Again, it is not an accurate test for everyone, but for me it is and it's a very simple test, just a little tube of blood. It is almost a definite the medication I am trying now is not working since they ran the CA 27/29 last week and the markers have gone up 200 since just the end of Dec. Until I have new scans done, this is not a certainty, but believe me this increase is enough to have me worried about what treatment we are going to be moving on to. I think whether you have them or not is a decision you and your doctor should make. All I can do is tell you about my experience with them in the last 12 years.
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My Onc told me that doing TM test can allow me having one more reference only. Because it is not reliable. However, ONE IMPORTANT THING must be telling you that DON'T do that right after the CHEMO. Some sisters including me will have an elevuated TM during CHEMO. The ideal time is after one month of CHEMO. GOOD LUCK!
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For some women they are not very reliable; for others they are. Mine have been pretty consistent, so my onc does them every month just for my peace of mind.
I have mets in my spine, but of course not every backache a 50-year-old gets is from mets, so when my back's been bothering me, it's reassuring to get that monthly blood test and see that CA 27-29 number stay flat.
I would say do them if you find them reassuring and reliable, and don't do them if you find them stressful or unreliable.
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On the day my 1.9 lesion was found on mammo, my markers were NEGATIVE.(I went directly to my pcp's office.) My onc and i agreed on the first visit that none would be done on followup. They can find so much more with close follow up, and symptoms of longer than 2 weeks are when I called the onc. Or with concerns, too,, of course.
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My onc does tumor markers, but he does not do any scans unless patient is symptomatic or requests them. I used to stress waiting for the tumor marker results, but haven't in a few visits...they now mail them unless not good news....before it was always a phone call....I think that has helped me decrease my stress level about results.....but I just don't like going anymore....I am still on a 3 month schedule 4 years later....I have an appt with onc on the 15th and part of me wants to skip it....I am also due to see BS, but haven't made the appt......In all there does not seem to be one standard protocol for follow up....
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"Then how do you flippin no? Just if pain hits and stays persistent for a period of time? Lets say you have lung mets and have no symptoms-how would you evern know? And wont they keep spreading if you don't stop them in time?"
You really are going to have to let this fear of recurrence go.If you are ever diagnosed with mets, you will no longer be aiming to be "cured", but to keep the disease under control for as long as possible. The mets will be found -and finding them early makes no difference. It may be hard to believe, you may not want to believe your onc when he tells you this (although not sure why you should disbelieve?). But can you please try to trust people on the forum who tell you the same. Why would we lie to you?
For what it's worth, I had mets to the pleura-and was completely asymptomatic. The only reason they were found was due to xrays done for other reasons to my upper abdomen. I was utterly astonished that the "tickle" I had jokingly mentioned to my gastroenterologist was-
1) Investigated by xray ("you want to xray a tickle? Crazy!", said I)
2) That it turned out to be a recurrence of the bc I had had 12 years previously.
Further testing then revealed tumours in my liver and bones. None of these were giving me any pain nor problems. This happens with many people. Starting treatment/finding mets a few weeks/ months earlier, makes no difference whatsoever.
You have choices in your life. You can accept you have been treated for cancer and try you darndest to move on. Or live every day scouring the internet for information to convince yourself that the cancer will return. If it does return, if you have taken the second route, then you will be filled with nothing but regret for all of the time which you could have spent enjoying life.If it never recurrs, then you are wasting the precious years in your young family's life. You won't get those back again...You have had a dreadful experience-nobody doubts that. But don't allow cancer to have the upper hand by letting it dominate your thoughts. By doing that you really have allowed it to win-irregardless of what it may or may not do to you in the future. Good luck.
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Well said Elaine.
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My onc does them on every visit, but I don't get the results unless I ask for them. He's only mentioned them once...when they went up slightly during my rads (CA 27-29 went to 42...I think 35 or under is considered normal range). Other than that, I see them as something for HIM to watch and worry about, not me.
And regarding Elaine's comments...so right on! Either they will find a combination of drugs or treatments that hold the mets at bay for a while, or they won't. Pure, STOP WORRYING or you'll waste your good health time! If mets do occur, will it make you feel better that you worried about them? I know you are still enjoying a lot of things in your life...family vacations and events. Focus on them, really live in the moment. Then if you ever have symptoms, get back in fight mode and push for tests/diagnosis/treatments. But as long as you are symptom-free/NED, enjoy your life.
And before you say "But...but" I will end my speechifying by saying I know this is hard to do. I'm two years from diagnosis, and I can say I only really started to let it go about a year ago. But you have to work at it!
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My oncologist does not do tumor markers either & like Pure it drives me crazy. I have a question which I hope is not too stupid but have to ask it. Is it possible to have mets for years without any symptoms? If you don't have symptoms can we assume that the mets are very small? The oncologists are really counting on us reporting things and their decision on not doing any tests just adds more worry to me . I have been told vary vaguely any new symptom that is persistent to advise them of. Maybe it is partly due to me being misdiagnosed in the first place. Sorry ladies but this is something I know I need to stop obsessing about but I need answers which I have failed to get anywhere in order to do this.
I am counting on the worry to decrease the longer that I am out of treatment. My worry has decreased somewhat whenever I get an ache or a pain or a cold.
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There are woman who are / were asymptomatic at the time of their mets diagnosis. Of course...and then there are others who were not. As for the question is it possible to go years without knowing you have mets? Sure....I guess. But I think its highly unlikely. If you have cancer in your liver, bones or lungs...your going to come up with symptoms. Like my onc said...." you will just know."
There are no rules set in stone with this disease. We, our diagnosis(s) are all different. I think part of this whole thing is learning to trust your body agian and listening to it. You have to really, be in tune. That takes time. Im 2.5 yrs out of diagnosis and all though things are better, of course there are moments when I think could it be? But, I just wait and see and it has always taken care of itself. You will start to know what is a normal ache and pain and what is just a cough.
I agree....there comes a time when you have to let the fear go. That...takes time. But once you do get there...its so much better.
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Pure, I have never had a blood test for tumor markers and I'm not sure I want them. Life is stressful enough without waiting for a test every 3 months. Since chemo I have only been in to see an oncologist about 3 times I think. I do want to change doctors in case something does come up in the future but as far as tests, I am with everyone else just live your life. Don't let cancer take over you life, you have given it enough of your time. It will get better sweetheart and it will become a bad memory. Hug and kiss those babies until your lips are sore, look into their eyes and see whats really important in life. None of us can predict the future but we can live for today.
Endure
If I can endure for this moment,
whatever is happening to me.
No matter how heavy my heart,
or how dark the moment may be.
If I can but keep on believing,
what I know in my heart to be true.
Then darkness will fade into morning,
and with this dawn a new day, too.
~ Bobi~ -
Oh I just wanted to say....
I took me time (about 1 year from finishing treatment) and a couple of sessions with a cancer psych to really understand and comprehend, "cancer or no cancer...noone has tomorrow."
I realize now, that before BC I was in la la land. Cancer? What cancer? Other people get cancer...right? WRONG!
I admitt, I loved la la land......but I will never be there again.
Ok...where was I...lol. Oh ya, cancer or no cancer...noone has tomorrow. When I was fully able to wrap my head around this, I was able to be at peace. Really, at peace.
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Thanks for all the good advice..... Its funny how the course of answers changed... I was asking not b-c I am freaking out just b-c I have to decide now that chemo is ending. My oncologist normally doesn't do them so I have 3 weeks to figure out if I want to. I think a baseline is a good idea. Thanks for all the advice!
Diana-that was a beautiful poem....
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Pure
Keep coming back and asking your questions, I believe firmly that we are all in different places in our journey. I spent the first year and a half in WORRY and Fear, like Nancy it was only after that I finally found some peace, and like Lexis it was after some counseling. This is a process and the questions you are asking are part of YOUR individual process. I agree that the worrying is negative energy and waste of time, but it is part of our individual process and takes on different time frames and courses. Most here will support you in any part of your process and try to uplift you to your next step.
I remember not too long ago many answering these posts asking similar questions and expressing dire fear, (me being one of them) you are just early in the process, I see it in your posts, one day at peace and have had a revelation, the next back in that dark fear. Sooner it will be more time in the former versus the latter. Be patient and easy on your self, an in many cases knowledge is power!
Be Well!!!
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My Oncologist does do tumor marker test about every 6 mos. She says she doesnt put too much faith in it though. I do agree that at some point that you have to let go of the fear, but I think that is very difficult to do. To answer Beverly11, yes you can have mets and have no symptoms. I am a CT tech and I cant tell you how many times we find mets on incidental findings. We were actually scanning for another reason. That is the part that is really scary to me because I have seen it be very advanced before it was caught. I know they say it does not make a difference as far as survival time but I personally find that hard to believe.
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i guess i look at tumor markers just as another way to gather information. i get blood work done every 6 months...including CBC and liver enzymes...etc. it all kinda is the same thing..i hope all of the blood work is within normal range....my onc does tumor marker to look for trends and that is about it. i also know that the whole business of relapse is about "finding a tumor and biopsy" to determine if there is a problem. for me, i like the blood work; it makes me feel more secure on some level that i am being watched. everyone is sooo different in this; my best breast cancer survivor friend" does none of this. i think you have to find your own comfort zone with this stuff.
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My tumor markers came back as normal while I was having a recurrence.
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Thanks for the info ladies. Beautiful poem Diana. It brought me peace. Thanks for posting it. Perfect timing.
Bev
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I think once I'm done with treatment and scans and what not, then I'll work on not worrying. I have enough on my plate right now to work on and besides, I think part of the process of getting to be at peach with it is actually letting yourself work through the terrible thoughts - not denying that these things can happen. Man, oh man, did I emotionally crash after the PET scan with the scare of the spot on my liver. Of course we are going to obsess over trying to figure out a way to beat this, or at least catch something else as early as possible. I still haven't found out what's going on with my liver (still have one more chemo to do before I can), but I'm already in such a better place and I know it's because I finally just let myself kinda "go there" and where can you go from "there" but up, right? I'm still filled with fear but at least I have realized that I'm doing what I can do and there isn't any reason to worry about the rest.
Having said that, it's funny - I just asked my onc about this two weeks ago, too. He also said he's been doing them and I didn't know. Since I asked, he said they don't do them every time because the results don't change that quickly. The last time they did them was in Feb. and that they were slightly elevated:/ I feel like Nancy, I won't ask again. I know he's checking them, so if there's something to worry about he'll bring it up to me. I swear, every time I think I have something to doubt about him, he's on it and I didn't even know. I like that, it makes me feel secure. At the same time though, because I have a lot of confidence in him, his attitude toward this spot has really got me down. 3 more weeks and I should know something...
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Billy, do NOT pay attention to your TM's while on chemo!! Taxol especially made my TM's go haywire. It took a month or so for them to settle down post chemo.
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