Tumor markers negative, but Mets found

[Gibbsbet]

I just wondered if anyone has normal tumor markers but pet scan found my Mets in the lumbar,sternum and pelvis. I'm 5 months into treatment and the labs still are negative for tumorarkers. . Has anyone had this situation.

[Clair19]

I’m going to say that is strange. Have you had a biopsy? I’m sure your oncologist knows but everyone I know has had a biopsy even though pet showed Mets. Of course my oncologist wanted to see what type I had to treat. I’m Her2 Negative, so obviously hormonal therapy. Plus if it’s just in bones that is better than like some who have liver, lung or brain. I would ask for a biopsy if you haven’t had one. Always stay one step ahead. Let us know.

[Gibbsbet in reply to Clair19]

Yes I had a lumbar biopsy and it was positive.

[Clair19 in reply to Gibbsbet]

Positive for what type of cancer? I mean like Her2 positive or negative? That’s what I meant.

[Gibbsbet in reply to Clair19]

Breast cancer HER positive

[Clair19 in reply to Gibbsbet]

Oh okay so very treatable.

[kit5 in reply to Clair19]

markers are not super reliable...they are just there to guide the treatment... my onc says she'd never alter treatment based on tumor markers... scans are more reliable.

[Clair19 in reply to kit5]

Why does he order if he doesn’t use them, for you? I do believe they tell about how you respond. Just me!

[kit5 in reply to Clair19]

SHE uses them as a guide...for me, they are accurate..for some though they are not - and sometimes one goes up while the other goes down...

[hdhonda in reply to Clair19]

My tumor markers are always within normal range despite active cancer. The test is unreliable.

[blms in reply to hdhonda]

Tumor markers are not reliable and pet scans are not as reliable as CAT scans

[Selmac in reply to Clair19]

I'm one of those people that tumor markers don't work at all. I was stage 4 for over a year before they found it. I hadn't had a scan in that time because my tumor markers were always low. When they found it because I was in so much pain my tumor marker was 10. I had it in some ribs, shoulders, spine and front of hip bones.

[Clair19 in reply to Selmac]

I’m sorry! Fortunately they are spot on for me. My chemo brought them down to 400. He does use them because Pet and Cat scans use so much radiation. I mean I get cat scans but not every 2-3 months. Mostly now because I’m just on Faslodex and no need. My blood work is fantastic so I gotta just see how I do on it.

[Wildcat1]

My blood is always perfect except for the low counts from ibrance. My onc said that tumor markers are unreliable for breast cancer. She goes by how are you feeling and your scans.

[Ibelong]

Yes. My oncologist says the blood test can’t be counted on alone. Speak to your oncologist about their opinion. Mine scans me every 3 months during treatment as well as monthly blood draws with markers.

[BeckyHobson]

Yes, my oncologist puts no weight on normal markers. Mine have never ever been out of the normal ranges or even close to the high end and yet I had a recurrence of new bone Mets after 26 months on Ibrance, Aromasin and Zometa.

Added Faslodex to the party and had more radiation to the new spots on my spine. New scans coming in September and feeling positive

[Clair19 in reply to BeckyHobson]

Hope the Faslodex works well for you! How are you feeling with it? I’m sorry Ibrance didn’t work, or maybe time to change it anyway. I take Faslodex and have just mostly stayed stable, which I will take. What type breast cancer do you have? Thanks 🙏

[BeckyHobson in reply to Clair19]

ER+ HER2- with Bone Mets to skull, jaw, & spine (mostly spine). Tumor grew back on same side of chest wall where it was initially 17 years prior to recurring. I had a mastectomy/chemo/radiation and years later some reconstruction. Who would have ever thought it would come back in the same spot?

Found the Mets to my lower mandible before ever finding the lump behind my implant. Drugs have starved the lump into non existence for now but the spine activity seems to be the issue.

Faslodex has been great so far. Get another set on Wednesday. No idea if it’s doing anything but sure hoping so.

[Clair19]

I hope maybe mine are a false positive. I must be pretty bad if it stays around 400. I mean my blood work is great! So I had once thought they where so high because of my breast cyst. I read it can be high if you have any breast problems, it’s not cancer but something from my reduction.