Tumor markers

[Stage4Gir]

Hi ladies,

My tumor markers have gone from 32 to 68 since May. My question is what are your actual marker numbers and are they significant? I know it’s not good but I guess I’m asking how bad it really is?

[MacroMom]

Markers are so individual, as are doctors’ use of them. What marker is this...CA 15-3? Mine was over 900 at one point, as low as 18 at another. Now it’s going down again and is around 250 but I feel good. My ND oncologist looks at not just the number but how quickly it has changed. How are you feeling?

[Stage4Gir in reply to MacroMom]

Thank you. This was a CA 27.29 test if that make sense?

[Francesca10 in reply to Stage4Gir]

Three years ago mine were normal at 28 but that was abnormal for me then. Rechecked in one week-38. Pet scan done mbcfound. My ca27,29 has continued to rise. Last check it was 111. The only time it ever dropped was after radiation to t7,t8 dec 2017. Then it dropped to 30 for two months.

I get concerned only if I have symptoms of something going on- like rib pain. Otherwise no.

[PJBinMI]

TMs are "not precise" and a small wobble like that can mean nothing....... Alot of oncs don't use them as they are not precise and they do cause us to worry. Some other oncs only use them for those with bone mets only as those can be harder to keep track of than other common met locations. During the 15 years that I've had mbc, the only time I was considered NED (no evidence of disease)) my CA27-29 bounced around between 36 and 60. It's been over 100 for the last few years but scans show mostly stable. I have bone mets only and have never had symptoms from them, no pain and no need to limit my activity. TMs sound so exact since they are numbers but I suspect that if I had blood drawn from my right arm and from my left arm, they'd end up with two different TM numbers! One way I have helped myself not worry so much is that whenever I have scans or other tests, I pray that they will show anything we need to know. That helps me not freak out if there is some progression or when I've needed to change meds. Anything we can do to help ourselves feel calm and look at this as a long term thing and not an immediate crisis!

[Stage4Gir in reply to PJBinMI]

Thanks everyone this info really helped me.

[GollyG in reply to PJBinMI]

Great approach to scans, thanks! Wholly sensible to focus on what they reveal as an aid to recovery rather than a blow to it.

[worldtravel75 in reply to PJBinMI]

what meds are you on to be stable for so long? and what type of BC do you have?

[PJBinMI in reply to worldtravel75]

I have lobular bc with bone mets only. The cancer cells are E + and her2neu -, started out P+ but are now P-. I got nearly five years from Letrozole, along with Zometa for the bones. Then over nine years from Faslodex, with Ibrance for a few cycles in 2016, but it damaged my lungs. When Xgeva was approved, switched to it from Zometa. I am now on Exemestane, along with the Xgeva. I think I am just very fortunate to have a nice easily controlled bunch of cancer cells. They are in more bones than they were 15 1/2 years ago when I was first diagnosed, but I have never had pain from them. I haven't made any major changes though I did retire early, about six months after diagnosis because I just did not have the energy to take care of myself while working in a demanding profession. My husband and I have been careful with our spending and have really good medical insurance so I feel really lucky in that regard, too. We live in a rural area, just outside a very small town (about 5000 people) and our cell phone coverage is terrible and there are only 2 primary care doctors here, but we enjoy living in the country and seeing deer and a variety of other critters. My sense of humor has helped me cope alot!

[MyMiracle13]

For me, TM are good indicators of disease progression. For others, they are not. But still, they have to be correlated to scan results because TM rises can be caused by infections or inflammation not necessarily disease progression. What the doctors look for is the trend. If the TMs are rising for 3 consecutive months then something must be afoot. Hope this helps.

Maria

[Wintervt]

Hi,

My markers have risen from 20 to 60 in the last three months. My oncologist is not concerned and wants me to wait a month before retaking them.

Sending ❤️

[kearnan]

I have been stage iv for over a year and a half. I never know what my tumors markers are. My onco said it does not make any difference. That they have no real relation to the cancer and how the other drugs are working. She said most oncos make no decisions based on tumor markers. So I would see on other boards how women were getting so upset and stressed if they went up and down. I told my onco I don't need all that extra info. I just need to know its working or its not and what the next plan of treatment is.

[Hidden]

Hi Stage4Gir -

I've done a lot of research and questioning docs re: TM's, based in part on the disconnect from what I've been told by my docs, what I perceive to be my experience, and what I hear from others, e.g. my sister and on this site. Some of what I've learned:

- Tracking/knowing TM's does not increase OS (overall survival). This was from some NCI/NCBI study. I think this might be the basis for the claim "they don't make any difference".

- They are generally considered accurate in many - but not all - patients, especially those with extensive bone mets. The conventional wisdom is that marked increases (like a high %, not a few points) precedes progression on a scan by a few months since the tests measure cancer even at a microscopic level, before a scan can detect. (from docs and studies). So many/most/nearly all (?) docs do pay attention.

- Case in point: I went to see my sis' onc for a consult recently...He'd always told her not to worry about them, because hers have never gone above normal (she's a one tumor at a time kind of gal), so I expected him not to focus on mine. So I somewhat hesitatingly pulled out my spreadsheet/graph of my results over time and he was keenly interested, asking clarifying questions, etc., and not in a condescending "oh look at the pretty graph" way, but sincerely. He said that he trusts the CA27-29 (which also goes by CA15-13) but not the CEA, although he noted that my CEA tracks precisely with my CA27-29.

- Oncologists should not use them as the basis for changing treatment, but they should sometimes use them to change the timing - in either direction - of a scan. I've had a scan at 2 months as markers increased sharply and have gone as long as 7 months without because markers were stable. Frequent scans are not only stressful for some people (like me - claustrophobia) but let's not forget that the radiation is bad for us. It's sometimes a reasonable decision to postpone...

- I bristle at the widely-held belief that they cause stress...for me it's the opposite. I am always anxious to get my lab results so that I have some measure of how things are going. If your onc tells you not to worry, they don't matter, but if s/he is ordering them with labs, I'd question whether or not s/he really thinks they don't matter...

- My markers have been on a generally steady upward trend for years, roughly doubling each year. In between, I've had swings - up and DOWN - of as much as 15%. So I don't stress or celebrate these blips too much, but I am grateful when an increase is followed by a decrease.

Okay, I'm going to get off this freakin' site! I've been working on my 2018 taxes for two days so far, which is beyond excruciating, and I've somehow convinced myself that posting on healthunlocked is a better use of my time! Funny how that works...

[Stage4Gir in reply to Hidden]

Thanks for your reply it makes sense. Now go get those taxes done! Haha

[Rbeth]

Mine were at 285 for the last 3 months. Now 319. My oncologist is not worried? My pet scans are good. Confusing? Reenie