Scans

[marianne88]

Hi ladies. So this is weird. My tumor markers have been rising over the past year but my scans are stable? Any idea why is happens? Thanks Marianne

[Silver126]

Hi Marianne, markers can increase for many reasons not related to cancer growth, such as infections and benign tumors. By the way, are they very high?

[marianne88 in reply to Silver126]

38

[Silver126 in reply to marianne88]

I’m always between 40 and 50… 38 is almost normal range

[marianne88 in reply to Silver126]

Yah but I started at 25 5 years ago and now I’m 38. It scares me for sure

[Hidden]

Hi marianne88 -

I've been fairly obsessive about my tumor markers for years. I've *learned* some things and *speculated* others, meaning kind of made things up in my mind! So I'll take a stab at this.

First, as I'm sure you know, tumor markers aren't accurate for everyone but they *are* accurate for some of us. My docs have long said that they're accurate for me.

I've been tracking them for 7 years, and here's what I've seen.

I had a gradual decrease for the first couple of years, which corresponded with decreased avidity on PETs (I have widespread/diffuse bone mets, so there are many lit up areas). When avidity started to uptick (gradually), so did my markers.

I then switched to CT's (due to radiation exposure, and a preference for the more accurate measurement on a CT), so I really haven't known my FDG uptake/avidity (I really don't know what the correct term is...) for years.

But they've been increasing, very gradually, for years, since that initial stage of increase. Sometimes they'd stall, then pick back up, like maybe 0-10% per month. During this time, I have had very slow progression, i.e. growth of existing, but *so* slight each time and - again - stalling sometimes for 1/2 year or longer.

But the rate of increase seemed much larger than the rate of progression. So I wondered if they sort of...build up? But I don't think they do...but *something* happens with long, slow progression (at least for me) that did cause the markers to increase.

I'll note, importantly, that when they would increase most dramatically (15% or so?), this would correspond with "progression" (mild) noted on scans. So oftentimes, when my markers were stable, my doc let me postpone scans...but if we saw pronounced increase, I'd schedule a scan.

Btw, I just had radiation treatments for a large area in my lower spine and one marker decreased 50% and the other decreased 17%. I'd actually bet a dinner on further decreases this month!

Oh, and btw, the one time I felt convinced that I was really effectively fighting cancer was for 6 months or so when I took up hardcore exercise, in addition to my other cancer-fighting activities. Markers decreased 35% over 3 months, with no change in treatment! But I'm lazy, so stopped exercising (until *now*....just resumed...).

Not sure that helps, but I've experienced same as you....

Best,

Lynn

[Laskia in reply to Hidden]

What tumour markers do they measure? I only seem to have CA153 mentioned on my reports.

[marianne88 in reply to Laskia]

Yes that’s the one the check!!!

[Kahe in reply to Hidden]

Hi Lynn, thank you for that info, I take Ibrance and let, one year in , treatment going well. I am interested in your comments on "hard-core exercise" . Would you mind sharing what you mean by hard-core and what exercise you do. I walk, a lot, and also pilates, exercise and its impact on cancer progression is something I am beginning to look at, thanks you, Kaye

[marianne88]

Thank you so so much 🥰

[Nocillo]

Your number is not super high. Mine were increasing month by month and my onc gave the standard response, “They’re not reliable “. After a very bad few months we find out the lobular cancer I have is in my stomach lining. So the numbers were rising for a reason. Stomach lining doesn’t show up on CT scan either , so it was months before it was discovered. I have a new onc now. You have to be your own advocate and get answers you’re satisfied with. Good luck 🍀

[marianne88 in reply to Nocillo]

wow this sis so interesting. Did you have any symptoms from this issue? It’s amazing how sneaky Lobular is. I hope your feeling well 🥰

[Nocillo in reply to marianne88]

I initially lost 17 lbs. without even trying because I was losing my appetite. But a few months later, I was so weak I couldn’t get out of bed, due to blood loss in my stool. I vomited everything up for weeks before they finally did an endoscopy and my stomach lining was covered in tumors. Under control now though. It was NOT a fun time. Lost 45 lbs. overall.

[kearnan]

I am going on 4+ years. My onco and cancer center in NY does not use tumor markers. I have never asked and never been told. She said at that center they do not seem to put any important on them as there could be various reasons why they change. I am fine with that. I do not need any extra information that is not relevant. But as long as your scans are stable, that is what is important. So concentrate on that and that is a good thing for you!