Tumor Markers

Momine

Dutchiris, that is annoying (distance to nearest lab), but the way I read the link posted by Melissa, you could order the test from the testing lab and have it drawn anywhere. It is just that if you have the blood draw at a different lab, then you have to pay the lab fee as well. The testing place gives you the order for the lab once you pay etc. It would "count" as a doctor's order, I think.

Also, I have never had anyone question blood work. The "worst" that has happened is that my lab asked me to wait to pay till AFTER the draw. Why? Because it was a lot of blood needed for all the tests and they were not sure they could get it from me. However, if I marched in and demanded a PET, for example, where there is serious radiation exposure, they might balk if I were not backed by a doctor.

Annette_U

A c-reactive protein is an inflammatory test. I had high results for years but never linked to breast cancer. It can help with stress and heart issues. If your stressed you are running your adrenals into overload and that can cause vitamin and mineral deficiency and sleep disorders. Also rapid hair loss.

mary625

C-reactive protein rises in response to inflammation and seems to be a better indicator of possible heart disease than of cancer. My family history is heart disease, so that's what I was trying to avoid. Cancer was not on my radar. I asked my primary care at least 3 times for this test. He ordered it, but the lab never ran it. Probably an insurance issue.

If I got the tumor markers independent of a doctor, what would I do if they started rising? What if I couldn't get my onc to pay attention? I guess I would have to fake some symptoms, hopefully in the correct body part.

Maybe we should consider medical travel to Greece where Momine is

Momine

Mary625, lol, you shall be most welcome anytime. Greece does actually get a a fair bit of medical tourism. It is a pleasant place to visit anyway, and the cost/quality ratio is very much in the patient's favor here. Although the public system is in a shambles, the private system is still doing fine and we tend to have careful testing and excellent surgeons.

However, even if you can get the TM tests, it is sort of tricky without the back-up of a doctor, as you say. False positives are common with these tests, which is why some docs do not like them. My mother got the test regularly after ovarian cancer, and her TMs rose a few times, sending her into despair. Each time it was due to a recent cold or flu and her cancer has never come back so far. Can't you ask your onc if he will follow them if you get them done privately?

What frustrates me is that the standard of care with regard to follow-up is the same for us stage 3 people as it is for someone with a tiny cancer and no node involvement. This does not make any bleeping sense to me. Even if, clinically, stage 3 is "early," it makes no sense to me to lump us in with stage 1A patients. To me the dividing line is between 2A and 2B. So, IMO, they should at least have two modes, one for stage 1-2A and another for 2B-3C.

Holeinone

Momine, I agree with you 100%. When I have asked MO about this, she gets that glazed over look, like I am asking for the world.

I did have a MRI on my shoulder 6 weeks ago. Surgeon said possible bone met. Radiologist said NO. Hope he is right. I had shoulder surgery 2 weeks ago to repair a tendon & clean up the bone spurs.

Melissa, thank-you for the lab info. I had no idea that was available. Lab close to me is 120 miles away, big city. Actually go there often, also where my shoulder surgeon is located.

dutchiris

I didn't check with a lab tech. I'll have labs drawn next week for cholesterol and thyroid levels. Maybe I'll ask then. My onc told me she usually doesn't order tumor markers unless you are stage 4 but she will order them for me every 6 months. I am far from being stage 1a. The tests have always been normal. If I become stage 4 w/o a rise in markers then they won't be drawn anymore.

moni731

Hi all! Interesting topic. My MO does follow TM's and I have had mine drawn since starting tx. Always in low 20's. In 10/13 the 27.29 tested at 48 ( norm<38) then 6 wks later down to 30. I thought no more of it and went 18 mo with out testing or seeing my MO d/t scheduling conflicts. In January '15 I asked my PCP to again order the 27.29 and it again came back high at 53. Hmmmm...... what to do now. Of course the PCP is having kittens and wanted to send me immediately for tests and to the MO. I'll see my MO (mid March) and see what she says. Unfortunately, I did not have TM's drawn before tx to see if they are accurate for me. I would like to hear from some women that TM's were indeed accurate for them and at what numbers did progression actually occur. Thanks in advance.

Lauriesh

Hi moni,
My tm's (27/29) were between 7 - 12 when I was stage 2, when my liver mets were found it was 50. After treatment, it dropped back into the 7-12 range and has remained there for the last 4 years that I have been Ned..
I think anyone with numbers above the normal range should have some kind of scans to rule out mets.

Laurie

moni731

Thanks for the reply Lauriesh. So far the lowest mine have been is 23. Do to allergies and severe se's, I only rec'd 12 tx herceptin and 3 doses of chemo (4 different kinds, incomplete doses) so my risk of recurrence was high. Somewhere on the 27.29 info on line, it was indicated that, generally, values over 100 were positive for tumors. Obviously not true for you Laurie. Thanks for sharing.

Momine

Moni, as far as I know, the most important thing about TMs is not the number itself, but that the number remain steady. Some people naturally have high numbers. I have a friend like this. She is in her 80s and had BC 20 years ago. Her TMs were always above "normal," but steadily so and she remains fine and cancer-free.

You can also get spikes, due to infections etc.

babs6287

If one has been consistent with their TM's there usually isn't cause for concern. But when they all of a sudden they go up a lot-that usually indicates a change and should be followed by scans.

That's what happened to me. My TM's were all low and all of a sudden they were more than double. The MO had me go for scans and they found some questionable areas (nothing lit up) did biopsies and found my recurrence of BC in my left clavicle lymph nodes and my inner mammary lymph nodes. Thank god the malignant lymph nodes are very small -3mm. Going on the new combo of femur and Ibrance. Hope it's the miracle they all think it to be

Babs

Momine

Saw my doc last night and the subject of follow-up and early detection of mets came up.

First of all, he agrees with us that it makes no sense to follow stage 3 patients the same way as stage 1 patients.

However, he also says that from everything he has seen and read, and he teaches some kind of fancy seminar on follow-up care, the most important things are a good history, i.e. talking to the patient about symptoms and concerns, and a thorough clinical exam, i.e. getting your hands, eyes and ears on the patient.

I then asked him about finding super-early mets and being able to get rid of them. His take is that when it works, that is great, but it is fairly rare that it actually works that way, so gearing follow-up care for that does not really make sense. Bottom line is that mets are usually found because the patient has symptoms or because the doctor finds a bump, lump or off-kilter blood test. That said, he does do TMs, although he probably wouldn't run them on a stage 1 patient.

That is just one doc, but I report it, since these are issues we have discussed around here.

ahdjdbcjdjdbkf

Babs, wishing you a wonderful outcome and hoping all is headed in a good direction. Recurrence sucks!!!!!

babs6287

Momine

I didn't have any symptoms and my MO didn't find anything upon examination It was ONLY the TM's going up that signaled she should delve further. Scans) I was put on Ibrance/Femara for the last 4 months and up until my last blood test, my markers were on a steady incline. Thank g-d at the last test they went down. I'm hoping the medication is starting to work because at my last scan there was some increased activity in 2 areas on my spine. Nothing definitive at this point.

More scans in 3 months!

And yes Mariasnow, recurrences do suck!!!! I'm trying to stay calm until my next set of scans but that really is NOT easy!!!

Babs