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scans show regression and cancer receding but tumor markers up

kit5
kit5

soooo bummed out. i had scans two weeks ago and things showed "interval decrease" after 6 cycles of xeloda...but my post cycle blood work show tumor marker increase in 2 of 3...waiting on the 3rd... my doctor texted me last night and said "i know you are probably disappointed, but the markers are like age - they don't mean anything if the scans are good..."...anyone else getting better scan results but higher tumor markers? should i be worried???

32 Replies
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I’m no clinical expert but if your scans are good, celebrate. My doctor never even talks tumor markers.

Celebrate, my doctor doesn't talk about tumor markers at all

kit5
kit5 in reply to Jaxon2007

you are right. i don't know why i obsess over stupid numbers...and they are still waaaaay lower than they were at discovery:) thanks both of you! now i'm gonna go have a chardonnay and go ninsy. (my family's word for sleep - i have no idea why we call it that...) hugs to you soul sisters!!

Hidden
Hidden in reply to kit5

I am on 3rd round of Ibrance, today appointment at my tumor markers are way up. He is going to do a CT and I am hoping the scans are good. But he says I may have to have chemo. Long story short, when first dx in October 2016 the MO never started me on chemo, just went straight to Arimidex. I feel like I have wasted 2 years

kit5
kit5 in reply to Hidden

how much is "way up". mine went up about 30%... which seems like an awful lot, but still lower than ever... just so upsetting.

Jerseygirl45
Jerseygirl45 in reply to kit5

Mine were going up about 100pts a month for a year. Then she started trying new things.

Hidden
Hidden in reply to kit5

way up meaning from June at 289 to 900 as of last week. They slowly started rising in March of this year then this. Climbing gradually till this big jump while on Ibrance

Jerseygirl45
Jerseygirl45 in reply to Hidden

No I think they like to try the easiest way for you before they go to chemo. My doctor is trying to avoid it for me. That's why I hope the new meds work.

diamags
diamags in reply to Hidden

You didn't waste 2 years! We're all different and your MO has no way of knowing. I was started on Arimidex ...and after 5 years it's still working. Unfortunately, this disease is still elusive ...and they're trying to figure this all out. They'll find a good one for you! Don't regret your first try.

Hidden
Hidden in reply to diamags

TY diamags, I have been very positive during all this, and am disappointed that Arimidex lasted one year, and so far looks like Ibrance isn't working. Someone on another site said could be a "Flare" meaning it is working and it is breaking up the cancer cells. I will wait to see what the Ct shows.

Crazydentist
Crazydentist in reply to kit5

Hi

My oncologist seems obsessed with tumour markers..mine were ridiculous at the start..over 1000

I love ninsy word!!!!..our family say bishybyes 😂

Barb xx

My oncologist and the new one I’m switching to don’t do any tumor markers.

kit5
kit5 in reply to Crazydentist

mine were over 1200 for the 27-29 and 700 for the 15-3 they dropped to 200 and 300...but they increased from july to sept, so i am obsessed! now of course i am looking at every possible bump, lump, hiccup and wondering - is it back? is there something the scan didn't show? ay yi yi... this is so annoying and distracting. bishybyes is good... cute.

Jaxon2007
Jaxon2007 in reply to kit5

Pray for me, on my way to Houston......be back Sunday! I'm thinking its just labs but would be a smile from God if I did get a scan and my tumors getting smaller or just as good not spreading!

kit5
kit5 in reply to Jaxon2007

good luck!! think of it as a self care getaway where people fawn over you:)

Will pray for you🙏

Clair19
Clair19 in reply to Jaxon2007

Praying for you too, may you have a safe trip. 🙏❤️

blms
blms in reply to Jaxon2007

Can’t wait to hear about MD Anderson!! Please inform. If I have changes in health, that will be my next stop

Jaxon2007
Jaxon2007 in reply to blms

Got back from MD Anderson and all labs were good. I go back October 5th, and then hopefully a scan soon. Still doing good on Xeloda as far as side effects go. Staying positive that I'm going in the right direction.

kit5
kit5 in reply to Jaxon2007

good news. my dr told me if xeloda works well out of the gate, it should work for a while:)

have a great day. i'm off to golf with my peeling feet. so annoying!!

Jaxon2007
Jaxon2007 in reply to kit5

so why are your feet peeling? i guess I won't really know if the xeloda is working for me until my scan.....but labs are good so I'm happy.... have fun!

youngfarm
youngfarm in reply to Jaxon2007

If tumor markers are insignificant, why bother to have them on flow sheet? My markers began showing increases in January 2018 and PET showed no evidence at that time. Then had PET again in June 2018 when lesions appeared on vertebrae.

Most doctors go by the scans not the markers. So don't worry. My radiologist said that if you have any kind of cold or illness it effects your markers. But I know how you feel, you want to see the numbers.

I would not worry about ca index. It’s the scans that they go by anyway. It’s just a very small thing compared to a scan. It could be anything from flare ups to shedding of cancer cells. It used to bother me but know it’s the scans that I worry about. Scans and the way you feel, markers last. Some women have normal index but scans are not great, so not to worry. My oncologist says scans, blood work and how you feel most important. Just something he does use, but doesn’t seem that upset when they increase. I think sometimes because the technology is there they use it to show they are checking everything. 💗

thank you lovely support ladies... i have calmed down now! i love this online group!!

I had the same thing happen! My markers went up but 1 week later my scans came back showing a decrease in the cancer. Then the next set of markers went down again. My Dr said “scans trump markers every time”...wait to see if your next set of markers go down again

Kit...I just recently had all scans done, from head to toe, ct, pet ct, MRI, brain scan because my markers had slowly been rising. All scans were clear, but there was something on MRI that they decided to biopsy. Turned out to be scar tissue. So, still NED at almost 4 years since diagnosis of Stage 4, invasive lobular carcinoma. Proof that rising markers can be attributed to something else. Claire mentioned "shedding of cancer cells". I like that idea!!

kit5
kit5 in reply to Obig

wow! good for you for NED!!! thank you for sharing that...yes, my symptoms are all great..almost no symptoms actually! and we had a huge drop in markers and good recessing on cancer spots...i have ductal, but it is behaving like lobular...showing up as "scatterings" and in weird spots - bladder, colon, under my right eye... and various bones... can i ask what you took before you were NED and are you on meds now or do you get to take a break if you go NED? how long before you got to NED... so happy for you!!

Obig
Obig in reply to kit5

I went on letrozole immediately, then Ibrance as soon as it was available. Had bi lateral mastectomy, and do Zometa IV. Staying the course with this protocol as long as it works.

My doctor does check my tumor markers but not constantly and relies more on the scans. I like you freak out over them. I am really trying now to keep things in perspective but some days are harder than others. Someone recommended looking up Kris Carr to me- she was diagnosed with stage IV cancer at 31 and 15 years later is thriving - she calls herself a cancer thriver. I have listened to a few of her talks on You Tube and i have found for me they are very inspirational. She has a long one which is an interview with someone named Chris Wark - its long but also very inspirational. It may not be for you but it gave me a little boost.

Yep forget the markers, the fluctuate so and make you crazy

Scans are good, but tumor markers continue to increase-onc says not to worry??!!

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