Tumor marker fluctuation

[RLMB]

When do you become really concerned about an increase in TM? Is there a percentage? Does that necessarily mean the meds are not working? Last scan showed "no evidence of progression". Last month 83.6 - this month 84.5. Sorry if this is a silly question... VERY new to this and trying to learn/understand what this all means.

[LouisaMay]

Hi RLMB,

Firstly, there is no such thing as a silly question! Unfortunately I can't give you a very expert answer but I think the difference in your numbers is so small as not to count as an increase, especially if there is no evidence of progression, which is great! What did your onc say? I imagine if the numbers go up consistently over a few months and over a greater number of digits, perhaps the onc will investigate further? I too am pretty new to this, diagnosed in Jan 19. Some people have numbers right up in the thousands so 83/84 seems pretty good? Good luck and best wishes. x

[RLMB in reply to LouisaMay]

Thank you LouisaMay. The ONC said up front to not get too fixated on the numbers but it's hard to not be concerned when they go up when we're happy when they go down.

Hugs to you!

[Barbteeth]

Hi there

Your numbers are low and the increase is negligible

Mine were over 1000 at the start and the lowest ever was 118

They steadily rose to 250 over six months and there was a single progression of a liver met which I’m currently having radiotherapy for

Please don’t worry over this ...lots of things can cause a small increase e.g having an infection or in my case I started taking biotin for my nails and apparently that can cause an increase!!

Also some oncologists don’t even use them...as they can be unreliable and cause unnecessary worry....there are ladies on here who have never had tumour markers taken

Hope that helps

Barb xx

[RLMB in reply to Barbteeth]

Thank you Barb. Praying you're feeling better and the next sessions go smoothly. XX

[Barbteeth in reply to RLMB]

Thanks...means a lot

Barb xx

[RLMB]

Thank you Sandra! It's definitely a scary world. So much to learn (and sometimes things I don't want to know). I feel extremely blessed to have found such incredible support in all you amazing ladies!

Hugs!

[Francesca10]

Hi

Welcome here?! Sorry you are joining us.

My tumor markers have consistently risen every month. My pet in November was mixed. No change in treatment. I had spinal radiation December 2017- they fell from 78 to 30 after but since have gone up slowly. So from diagnosis sept 2016 at 38 to now at 112 doesn’t phase dr. I have a different take though on them. Mbc was found because the TMs were still in normal range but not my normal. My normal for 7 years after bc was 20. Blood taken in aug 2016 it was at 28; in sept 38-pet scan showed mbc in bones and lungs. So for me, my body is sensitively accurate with them.

Now another pet scan this Friday. I am thinking of changing doctors now for few reasons too long to write here. I hate that test with a passion and truly feel CT would be just as good. I discussed this so many times with him but he ordered the pet scan anyway.

I am rambling. You had a good scan result and your markers had no significant rise. You are doing great. Hold onto that

♥️Frances

[RLMB in reply to Francesca10]

Thank you Frances! Praying for you on Friday!

[mariootsi in reply to Francesca10]

Will be thinking of you on Friday. I wish you a good scan with good results!

[kearnan in reply to Francesca10]

Actually I always get a CT scan. My first breast cancer surgeon was the one after testing told me it was stage iv. She said she ordered a PET scan (I was on NY gov. marketplace medicaid in ny) but they would probably deny it and told me that a CT scan was just as good and so far no progression after a year and I get CT scans every three months. I do not believe oncologists need to listen to their patient's to a certain extent and what kind of testing the patient wants. They are specialists in this area. We are not. They know more than we do about what is best. In my opinion. So don't an oncologist who studied for years to listen to every patient's request as to what they think should be done. Pet Scan is actually more expensive than the CT scan. The surgeon told me and was correct that the Pet Scan would be denied and it was but she said don't worry, we can see what we need to from a CT scan. I also see the opposite. Women complaining they want Pet scans and not CT scans. If an insurance company feels that a CT scan would work just as well, they will deny a Pet scan. Good luck.

[Francesca10]

Sandra

I have commercial insurance thru cobra. No that isn’t a factor I would think. I am angry about it- but I am one who verbalizes and I will tell him what I feel about it all. I am doing it but dont want to. I think he is half out the door- he is in his 70’s and takes a lot of vacation. Had a hard time reaching him. It may be time to move on from him. I just don’t know where to start.

Love you

Frances

[dasypien]

My tumor marker went up just 3 points pet scan showed new lesion of 4.0 on pet scan??? You never know nothing is that accurate. The pet scan showed a lesion on my arm it was a shot i got that puffed up and itched not a lesion.

[kearnan]

I have had stage iv for over a year now. I seen on a forum board how some women would get themselves sick and scared over a rise in tumor markers. My onco told me they never use tumor markers and they fluctuate and that they do not take that into consideration. I was like fine. All I need to know is the med working or what. No more progression in over a year. I dont want paperwork, I dont know need to know my numbers and keep track. All I want and need to know is that everything is okay or its spreading. But I was like this from the beginning.

[Francesca10]

Thanks Sandra

I am meeting a new primary doc on the 9th. Guess I will start there. I am sad about it- but I am losing confidence in him and that isn’t good for me. Trust is critical with this diagnosis, I know. Agh

Have a happy 4th😍🎆❤️

[PJBinMI]

There's so much to learn about living with mbc! I'm a long timer (15 +years since diagnosis with mets found during initial staging, so 15 ++ years with mets) and have been to quite a few bc conferences and trained as a bc patient advocate. Alot to learn about TMs. There is more than one TM but there are things besides cancer progression that can impact them. Some oncs, maybe even many oncs don't test them because they can be misleading plus they can be anxiety producing for us patients. Some oncs only use them for patients with bone mets because bone mets can be difficult to track as healing mets and progressing mets can look similar on scans. Minor changes in TMs are meaningless, and which ever marker you are referring to, that small a change is meaningless! I've been told more than once that scans tell us much more than TMs do and how we feel tells even more than scans! I don't know where you live but one of the very best things that you can do for yourself is to see a bc specialist onc at least for a second opinion, even if that means traveling and staying in a hotel a couple of nights! In the US, the top tier cancer centers are designated as "Comprehensive Cancer Centers" and those are listed on the website of the National Cancer Institute, a division of the National Institutes of Health in Washington, DC. The website is not as user friendly, in my opinion, as it used to be and if you have trouble finding a CCC near you, let me know that and where you are and I'll look it up for you. Another thing is that it can be helpful to talk with onc nurses when you have a question. If they can't answer it, they can talk with your onc and call you back. And do know that we are living longer and longer with more of us exceeding ten years all the time! Don't worry about "silly questions"--we were all new to this once and full of questions, concerns and anxiety! I got a knot in the pit of my stomach every time we drove into the cancer center parking lot, and my blood pressure went way up, for at least the first year or year and a half! I'm pretty calm now most of the time, and I've managed to become comfortable with needles, something that was a big accomplishment for me as I'd had a horrible experience with an IV after my daughter was born many years ago. IT really does get better!

[cjazzer]

Since I started Verzenio in April, my tumor markers have fluctuated 10 to 15 points up and down. My oncologist wants to wait one more month, and if the markers continue upward, he’ll order a PET scan. I feel great, no symptoms, so I’m going to relax and see what happens.

Oh, the anxiety waiting for the test results! Then going into deep depression when they have risen. I feel your pain!

[worldtravel75]

this isn't even a fluctuation .its just a margin of error

[Becca65]

I think tumor markers are also affected by where you mets are. My numbers have never been over 99 and change. However at this point my ascites were life threatening and I had no quality of life. Other people here have numbers in the thousands and yet are able to live a fairly normal life. So it all is very individual. The drs watch for trends in your numbers so if your numbers continue to climb for 3-4 months they may look for reasons why that is happening. If it is just a few points different it may just be what you ate or did that day that changed your numbers. I keep record of my numbers in a book, noting changes in meds, the type of testing kit used and what lab is being used. All these things can also effect your numbers. If I notice a trend I tell my dr - you are your own best advocate. Charting these things myself gives me power to be involved in my treatment.

[KGE1 in reply to Becca65]

Hi Becca65,. I'm replying to you because yours is the first post I've seen that mentions asceties. I am 71 and I was diagnosed with Stage IV MBC in December 2017... Mets in my bones and some in my liver. I had to have rods placed in my femurs. I was put on Arimdex, then switched to Faslodex, Xgeva, and Kisquali. The CT scans don't show much change, but the asceties began slowly in the spring and now I can gain anywhere from 1/2-2 pounds per day. I've had it drained twice getting better 5&7 liters each time. I hope to have a drain placed in the next few weeks which will allow me to drain at home and keep it from getting so bad. I hope this isn't TMI. I was wondering how you are managing the disease and the asceties. Thanks for your time. Prayers and good thoughts for you.

[Kathyquilts]

They do fluctuate, and usually this means nothing. A really big jump, coupled with other tests, including visual scans, can mean there’s a problem. But an increase with no corroboration from other tests is tucked away, unless or until something else changes.

[illini9]

Hi - one of my nurses gave me a great analogy that has kept me from getting to wrapped up in a swing. Or as I call them wobbles. TM are like the stock market - a one day swing on the market is just that but what you look for are trends over time. I've had months where my numbers have gone up and then the next month they go right back down. Sometimes just a point or two and sometimes 10-20 points. I also chart them like Becca65 noted - gives me a sense of control in seeing what they look like. I was in the 4000s when I started and am now in the 80s. So when I see one "wobble" I take note and then look back at other wobbles that thankfully didn't mean anything.

[Godbeforme]

I don't know, but mine are in the 300's after having had gallbladder issues and a hiatal hernia (lots of indigestion). I read inflammation can cause high tm markers as well. As far as I know, I have no tumors and just recently stopped letrozole for a break and the indigestion and high blood pressure went so low I had to cut my bp meds to 1/6th of what I was taking before. I've had hereditary high bp since I was 40 at the onset, just like my father. Hope in some way this helps. Goodness, I know I need the letrozole but one can't live without their heart working properly and blood pressure managed, or am I wrong? The terrible acid reflux seems to be going away also, I will know soon because I just had a hot dog for breakfast and now going back to bed (4:22 a.m. here); I know that before when I went to MD Anderson in Galveston, TX, he did the CA 27-29, but he said he went by the CT scans and bone scans for the main insight as to how my meds were working. MD Anderson in Galveston never did a pet scan either, only ct's and bone scans. I asked when I'd have another mammogram and was told that they are no longer done after one has already had breast cancer. These people said something else ... and I just say, "but MD Anderson said" ... I'm sure that really endears me to them. My how things change when you change cities/doctors. Just another tidbit that might help .... by the way, my CA 27-29 was under 30 before, a few months after beginning my treatment of ibrance and letrozole in 2018. God bless you and heal us all in Jesus name, amen!