Tumor markers

[marianne88]

Hi all. Just wondering if anyone has had tumor markers go up but scans are stable? What did your doctor say about it. Thanks so much. I get so nervous with those tumor markers. M

[luckysmom13]

My oncologist says they look at the overall picture and don't rely solely on the tumor marker. My CA 27-29 fluctuates by 10-20 points in either direction, usually in the range of 45-65. It goes up a little and comes down in the next 1-2 months. I would trust the scan over the tumor marker.

[marianne88 in reply to luckysmom13]

Thank you so much. My doctor does the CA 15-3 markers and it has gone from 28 to 38 in a bout year. She says ibrance will not last forever sad but true

[luckysmom13 in reply to marianne88]

I wonder how they decide which tumor marker to follow?

[marianne88 in reply to luckysmom13]

I was wondering that too. Strange

[Hazelgreen in reply to marianne88]

Apparently, CA 15-3 and CA 27-29 measure the exact same blood component so are interchangeable. You could ask your oncologist why s/he has chosen one as opposed to the other.

[Andersl in reply to luckysmom13]

Years of research

[Southside25]

My understanding is that tumor markers are not that indicative of cancer activity and can rise or fall because of other circumstances, like getting the flu or effects of medication. I haven't had a tumor marker test in a couple of years. If my onc. isn't interested in my tumor markers, than neither am I. I don't even think about it.

[Andersl in reply to Southside25]

My thoughts too. My oncologist goes by the scans

[Ursula_I in reply to Southside25]

Here in the UK they don't seem to look at tumour markers at all! My oncologist has never mentioned them in 6 years! Mind you, my cancer has got really bad recently. Picked up by the CT scan. All the best to you, Marianne... try not to worry. X

[rubyc1234 in reply to Southside25]

My oncologist does not take them and I am into my 5 th year with MBC. She relies on the scans.

[kearnan in reply to Southside25]

Same thing with me and the cancer center I go to. They do not use them at all. I do have CT scans every three months and I am now going into my fifth year with MBC. I have never known what they are. Like you, the CT scans are the most important.

[Nocillo]

Yes, tumor markers were steadily rising for months but scans were stable. I knew something was going wrong. Doctor wouldn’t listen to my concerns. After about 7 months I started vomiting several times a day and losing weight very fast. Finally my family doctor ordered an endoscopy and they found my lobular cancer was in my stomach lining, which of course will never show up on a CT scan 😡. If you are very concerned, insist on any other test that might help find the reason. I wish I had been more insistent. Hindsight is 20/20!

[Hazelgreen]

Cancer markers do tell you that something is changing. As Nocillo mentioned, it could be something subtle, not picked up on a scan.

However, small fluctuations from month to month may not be worth worrying about (you already know that you have MBC). A 10 point increase in a year is certainly a small increase. It sounds like you have already discussed this with your doctor so she's aware, and will not change your meds until it's necessary.

My CA 15-3 was as high as 190 at one point. Now, with my current meds, it's as low as it ever has been at 45, and I'm quite pleased👍.

Good luck with your readings. I hope they stay as low as they currently are.

Hugs,

Cindy

[Beryl71]

They usually say scans are more reliable. Try not to worry. As long as general trend is down. X

[Mimiholl]

Morning Marianne, I was glad to see your post. I feel a connection with you, if that doesn’t seem corny. I think I remember you are at the Cape, I lived for 42 years in a small town North of Boston before moving to North Carolina after retiring early from teaching. We also spell our name the same which is rare. I have been on Ibrance 63. Months. I keep really good notes on my symptoms and test scores. Looking back over the past year from last September to now my scores fluctuate as always from 24 to 35. Sometimes the pattern seems to fluctuate depending on which day of the cycle I’m at. I recently went from Ibrance 125 to 100 due to anemia and fatigue. My scans have always been stable. Just had my yearly mamo and all good. 8/ 2016 I was diagnosed stage 4 breast cancer. I had 26 weeks of red devil chemo, a lumpectomy , removal of 1 lymph node. I then had 6 weeks of radiation of my chest including t4 on my spine. I have to go off Ibrance for 3 weeks before having knee replacement( I have osteoarthritis I’m 70 and have been using a cane for 15+ years) , since Ibrance lowers immune system . This is making me nervous, but my oncologist assures me it’s ok.I hope you have continued success on this journey.

Marianne ( Mimi to my 6 grandchildren)

[marianne88 in reply to Mimiholl]

Oh wow same name and spelling. Where did you live in mass. I live north of Boston also. Lol

[Mimiholl in reply to marianne88]

Hi I lived in North Andover with my husband and 2 sons, and where I was also a teacher. I moved to North Carolina in 2015 and a year later I was diagnosed . My oldest is a Dr here and my youngest moved here with his family 4 years ago.

I’m so lucky to be surrounded by my family

Marianne

[marianne88 in reply to Mimiholl]

Oh wow I live in Wilmington for 28 years and brought my family up here. I grew up in revere so I haven’t left mass. I am a patient at Dana Farber. I was diagnosed in 2012 with stage 3 and then again in 2017 Mets to bones. So we lived 1 town over from each other. How is your treatment going?

[Mimiholl in reply to marianne88]

Wow this is crazy, I live in Raleigh NC. My treatment is still on target , Ibrance 100 3 weeks on with letrozole and then just letrozole alone on fourth week. I had been getting xegeva bone shot every month now every 3 months. Mamo is now yearly and full body ct and bone scans every 6 months. I have had to have iron infusions and blood transfusions infrequently when I became too anemic . Other than my knee problem I’ve been hanging in . Similar symptoms that most experience , sometimes feel like I’m 80., but grateful for everyday. How about you?Marianne

[Half-Full]

I respect everyone’s perspective on this, it’s a tough issue and a personal decision, but as Nocillo mentioned above, not all types of progression will show up on scans. My wife’s cancer spread to the lining of her lungs, this did not show up on her scans. We had 3 months of increasing tumor markers (50% increase each month) but with no significant changes on her scans her oncologist said she wasn’t concerned. We knew there was progression, we convinced the oncologist to start the process of discontinuing the current treatment and move on to the next, and by the time that happened she had a 4th month of higher tumor markers and my wife ended up in the hospital getting lung taps on supp O2 and malignant pleural effusions confirmed the obvious. I hate to think what might have happened if we passively accepted our oncologist’s advice. These folks are human, they don’t want to change treatments prematurely and they can get tunnel vision looking for clear black and white evidence in a gray field. As you all know this is far from an exact science. Tumor markers are not reliable indicators of progression for everyone, but they have been for us. If tumor markers have been reliable for you in the past, then I would encourage you to pay attention to any significant % increases that continue for 2 or 3 months. Wishing you all wisdom and blessings.

[dnamscg in reply to Half-Full]

My MBC was found on an xray 11/21 after I felt awful for 3 months. It showed pleural effusion (malignant tumor in lining) and malignant tumor on sternum. After CT at oncologist it turned out Breast cancer of the bone and after NM body scan it is everywhere. Have only been on meds since 2/4/22. Still have small effusion but had fluid drained twice or three times. New scans this month. We just have to go with the flow and hope for the best.

[Gibby21]

Yeah I had the opposite tumor markers at 8 but had growth in tumor???

[PJBinMI]

That's a very small change! And things other than cancer can impact those numbers. Generally, our oncs give much more importance to how we report feeling, with various scans second and TMs are a very distant third. I'm a long timer with MBC (18 years) and my TMs have only been in the normal range for a very few months in around the third year of treatment. I've quit paying attention to them.

[kearnan]

My cancer center in Brooklyn, NY never uses tumor markers. My onco said they (meaning the oncologists at that center) do not use them and that they do not really reflect anything. I have never asked nor have I ever been provided with tumor markers and I am now going into five years with MBC. I just continue to get CT scans every three months. If you scans are stable, that is good.