CA 27-29 again: markers up, sigh

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Anonymous
Anonymous Member Posts: 1,376
edited May 2022 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi amigas,

Again with the markers. Jan was low 60s, then retested and dropped to 50, now 68 for my last check up. Of course I'm scared, but feel resigned--weirdly, isn't this what we all get warned about? ILC seems to recur later rather than earlier? I suppose I'm waiting for the other shoe to drop.

Rest of current labs are perfect--that is the word the NP used. Liver enzymes, calcium, kidney function, white count, etc etc blah blah are normal. I don't know what that means except to say I'm healthy otherwise except for potential recurrence. The physical exam--she did a thorough one--was perfect. No pain. No fatigue. No weight loss.

Protocol is: a CT of chest, an MRI of breasts. I just donated a vial of blood for a CTC (circulating tumor cell test) yesterday at my appt. Anyone have one of those? I heard they aren't that reliable.

I have the CT scheduled this coming Tuesday and hopefully the MRI next week too-waiting for a call from scheduler. I had a torso CT in Jan 2022 and results were clear except, using my MO's words from the radiology report, "small scarring in right lung", which we thought to attribute to radiation on that side in 2012. MO said he wanted a follow up of the CT. If it's just scarring, I don't know why we need one.

MRI of breasts in Sept 2020, and then before than in 2017, always clear. But now another one.

I have a repeat blood test of 27-29 May 27 and then another MO appt. June 1.

Any positive thoughts and info? I need it now. I am okay with all this rabbit hole searching, but already weary of this.

Claire in AZ

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  • BevJen
    BevJen Member Posts: 2,523
    edited May 2022

    Hi, Claire,

    I can see why you are concerned here. I had a similar situation in 2018-2019 when my markers started to go up. My doc said to wait and we would keep measuring. Unfortunately for me, the markers did continue to go up and I do have metastatic disease. I am also lobular. As I recall, the rest of my labs were unremarkable. My original diagnosis was in 2003.

    I also had a CTC test. I found it pretty worthless. My oncologist, who has been ranked by Forbes as one of the top 50 breast cancer oncologists in the US, said -- well, there's some stuff in there but we don't really know what it all means. I even consulted with one of the docs who is known to be one of the top experts in CTCs, and he basically shrugged his shoulders about it. So it was absolutely unhelpful for me. My MO has not done any more of those tests.

    I'm sorry not to give you positive news, but just because your markers have gone up a bit doesn't mean that you are having a recurrence. I think they will just watch you from now on perhaps a little more closely to see if there are any trends that appear. As you know, markers can go up for simple things like other infections, etc, and let's hope that that's what is going on here. Good that you are following so closely.

    Thinking of you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2022

    Thanks, Bevjen, for responding. I hoped others would have some insight. How are you doing? What kinds of scans did you have to determine MBC? What are you doing for it and how is it going? And how long did your MO wait and watch till they went looking?

    I am really angry at my body for not fixing itself. It led me to believe it would be okay, when tumor markers dropped in Jan after December’s slight spike.

    Claireinaz

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  • BevJen
    BevJen Member Posts: 2,523
    edited May 2022

    Claire,

    I hope some others will respond as well. With my first MBC diagnosis (2006) it was found by my gynecologist as part of a routine gyno exam. I went on letrozole and stayed on that until 2019 with nothing going on (not in my original post to you.)

    I had a CT scan for my 2018/2019 adventure, along with a nuclear bone scan and a liver biopsy. We really didn't watch and wait -- maybe 2 months max. Once it was determined that it was MBC (AGAIN!) the doc put me on Ibrance and fulvestrant. That held me for about a year and a half, when my markers started creeping up again. Then, because I had so many mutations in my cancer (about 25) my MO agreed to try keytruda by itself. Not sure that she was really familiar with that drug because I see it used with other drugs -- not alone. Stayed on that about 4 months and had progression to my bone mets and especially to my femurs. Was hospitalized and both femurs were operated on, followed by radiation. That was a year ago.

    About 9 months ago, my doc put me on neratinib and xeloda. I had a great deal of difficulty with this drug combo, although a lot of people on the boards like xeloda. The neratinib seemed fine (look it up -- it's not used that much, but it is used with lobular). I am going to Memorial Sloan Kettering this next week to talk to a lobular specialist who also specializes in having a lot of mutations (or so my MO says). The issue is whether we should change treatments again -- my MO is big on Enhertu, but I'm not.

    I'm so sorry that your body didn't heal itself. That is the puzzle with lobular, as we've both found. Looks like it's gone, but it's not. Good luck.

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