Rising Tumor Markers and Mental Stress

Hi Beth – I was diagnosed with MBC to bones, November 2023, and began systemic treatment February 2024, after an IM rod placement hip to femur to prevent my leg from breaking, and then radiation. I just began my fifth line of treatment yesterday. 😳 Trodelvy. Over this time, I have had my tumor markers checked regularly, weekly to monthly, depending on my line of treatment. For me, tumor markers have NOT been an an accurate measure of what’s going on with my Mets. While on Orsedu and they dove steeply and I had tumor progression. I’ve also had the markers rise sharply and then have very stable scans.🤷‍♀️ I still get Marc test every week as part of my regular labs and we watch them if they go up we may move a scan earlier if they go out down, we keep with my routine scan schedule. I hope my experience is helpful to you in some small way. Mary 

Thank you Mary! It helps to hear from someone else and to know that I’m not some weirdo case who doesn’t respond according to the best laid plans. ..And maybe tumor markers aren’t as significant as I think they are…just one way of looking at tumor progression. I do feel like I am being followed closely. Thanks for responding!.-

Hey Beth, I have mLBC. I’m on my first treatment my numbers came down and they are climbing slowly. My ONC MD says it’s a correlation of labs and PET scan. I don’t have any mutations. Hang in there, but ask your doc about Oxybutrin(for over active bladder. It has helped me immensely. Keep positive stay strong 💪.💕

The signatera test is based off of your blood samples from you. My biopsy was used for guardiant360. I get Signatera tested monthly right now. I’ve had number go up and down again. The company who makes the test will set up a free counseling. It is only compared to your blood. Originally it took 4-6 weeks first time. After it only takes 2-3 weeks usually. Hope this helps.

Thanks for sharing your experiences…..time will tell. I Try not to think about it and countdown the days to next scan . Appreciate your input ladies. Hang in there too on this journey!

Unfortunately there are no “maps” or guarantees with this cancer journey, live the best you can and share your love. Every person is terminal, we just know more about our endings.

I asked about having tumor markets done but my oncologist told me they aren't reliable and I haven't had them done. I have ct an me MRI every three months

thanks Suzanne!

The mental burden of waiting and watching numbers can feel overwhelming, especially when dealing with the uncertainty that comes with treatment changes. Venting about these feelings is completely understandable - many in this community know how challenging it can be when test results don't give clear answers and when waiting for the next scan feels endless. Reaching out here shows real strength, and hopefully others who've navigated similar experiences with rising markers and treatment adjustments will share their perspectives.