hi everyone! I’m new to the MBC community! After 7 years of being clear and told
I was “cured” of BC it came back 8/2022 in my pelvis. I’m just curious about my tumor markers! They have been slowly going up and then down and the. Up again. This last month my ca 153 went up by 20 while my ca 2729 went down my 25!!! I’m not sure what this means and I’m also looking into a 2 opinion. Thx so much
Welcome to this wonderful group of people. You will find an enormous amount of support, guidance and information here. There are many MBC Thrivers here. Tumor markers are always a hot topic. By themselves they are not always an accurate reading of what is happening with a cancer as they move up and down for a variety of reasons including cancer cell death. They have to be taken in context along with your symptoms, scans and other tests. Dana Farber has an excellent video on you tube about Biomarkers and Tumor Markers. My own markers have flared up and gone down, however there was no progression seen on scans. My oncologist says I am stable. I watch them but don’t put a lot into them. It will only be a worry if there are dramatic changes. Wishing you the best on your MBC journey. I hope this video helps
youtube.com/watch?v=1CDU3gg...
I appreciate the info! Thank u so much! I’m still spinning with this! It’s defiantly a tough pill to swallow! I thought I was cured! I’m ER positive and HER2 low! I am currently on Verzenio, Faslodex and xgeva. For now I’m bone Mets only and praying they stay that way. I feel really good compared to what I was feeling in the fall when I couldn’t walk….. the pain I had was crazy. I’m now back to exercising and my yoga and pretty much doing everything I use to! Thank u so much for responding
I remember the feeling of spinning out of control in disbelief at the start. Some days are still tough, but most are not, and my life moved forward full of family, friends and all the activities I love especially travel. My wish is you will too!
That is similar to what happened to me...Eleven years cleared, 6 years after they said I was cured, and then I couldn't walk, not because of pain, but shortness of breath. Could not get my docs to test. When they finally did, it turned out I had a large tumor in my chest. Within a short time of starting on Faslodex and Ibrance, I was running uphill, and kneeling to garden! Really just days. I was so excited I ran across Broadway and tripped on something and broke my knee. My docs were disgusted. One thing after another, and now this immobilizer. It really is thrilling after the initial blow to feel well again.
Good your 1 tm came down. You didn't give the absolute numbers. Mine were never as sky high as some here, but when they go way up, the scan usually shows something. Otherwise, they bobble around, above and below normal. It takes a while to figure out what your tumor markers mean. They are not definitive. They just indicate whether you need testing -- imaging. Your oncologist should be able to make that determination.
my 153 is at 160 and 2729 went down from 225 to 200n
hi thanks for your report- as I am sure many women can relate!
Glad you’re walking and enjoying life more - I too had BC and last year after 4 years showed up in my pelvis like you.
I had Sabr radiation on the bone to hopefully irradicate it- so scans every 3 months now- on Ibrance and arimodex
As you say hope it only stays on bone- and can be treated
Wondering what they did for your pain when it returned to your pelvis- did you have radiation?
Glad you’re feeling better and out of pain
I had 10 rounds of radiation to my hip! My pain has gone from a 10 to 2! Somedays are harder than others but I’m pretty much back to normal activities and I’m doing better! I don’t need pain pills or anything sometimes I will take Motrin if I feel sore!
my onc told me sometimes the cancer cells shed and cause the markers to go up- still they are not that high . Is your dr worried? The scans will tell them otherwise if they make changes. How many years were you cancer free? I wish you the best🙏✝️I was never told I was cancer free because I was stage 4 already. I have never had radiation or chemo or surgery. I am hoping to start new med next month. Cancer marker 27-29 covers the pelvis and 15-3 breast .
omg thank u for that information!!!! My 153 went up to 160 and my 2729 actually has been trending down and now is at 200!!! It’s crazy to me I was 7 years out from OG diagnosis! I had double mastectomy, 8 chemos, hysterectomy, 36 radiation and 5 years on Tamoxifin! I was told I didn’t need the Tamoxifin anymore and one year later it came back!!! 😵💫
so those markers are specific to the areas?
ca27-29 antigen is for previously treated breast cancer and cancer ovarian and others. Ca15-3 is breast specific
Really…. So do u know why they run both?
now they are just running ca15-3 and Cea sometimes.
So sorry to hear of your recent diagnosis. Another option that some ONCs will use it s CTC (circulation tumor cells) blood test to help put together the puzzle.
is that like the Guardent liquid biopsy test? B
I believe it is. If memory serves correct a liquid biopsy provides a CTC reading
yes I have been doing that one! This is the second one! It suppose to show if your cancer is responding to the medication…. I’m on Verzenio, Faslodex and xgeva for my bones!!! Ugh this is a lot to take in!
My wife will be starting on Verzenio in the next month or so when finished with radiation. She has a concern about the side effects. Curious, (if you are ER+) if you have had an FES PET scan that measure estrogen uptake. The radiologist I was listing to on this stated his excitement, with this new technology, to determine by these scans if AIs and CK4/6 inhibitors will be effective instead of waiting 3-6 months to confirm with scans. I have heard many insurance companies don't want to pay. We have not had one yet but it will be discussed on our next Onc visit
Verzenio I’m the beginning was tuff but tolerable! The first 3 months was hard on my stomach but now it’s leveled out and the side effects are little to none! Besides for fatigue here and there ! It’s helping I am thinking because my pain had gone away and I am able to move and exercise again! My scans are showing more but they also told me that bone cancer looks worse on scans when it starts to heal and that it can take a while to really know! My markers are kinda all over the place but the dr said that just a piece to the puzzle! Mostly they go by scans! May will be the scan that will really determine if my meds are doing the job! I had the liquid biopsy test that shows weather or. It the meds are working and this past week was my 2 one so fingers crossed the Verzenio is doing it’s job! Yes ER positive her 2 low and! I’m also on xgeva and Faslodex
I never heard of this scan thanks so much for the info! I shall research it now! Prayers to ur wife!!!
The FES PET is much easier to take than the regular PET; no fasting, for one thing. It is specific to ER+ bc. I had it once, but then oncologist decided never again because I had had the regular PET repeatedly and it was easier to match the scans. The FES was interesting, though. I was on an oral SERD in a study. It showed I had no estrogen circulating at all. (I am not sure how.) That is, the oral SERD was working 100% and I was NEAD -- until it stopped working.
that’s amazing! Gives me a lot of hope!!! I will ask about it next appointment!
what’s oral meds were u on? What cancer type? Her 2 status etc….
The med in the clinical doesn't have a name. It was being tested by a pharmaceutical co. called Zenio. C5 or something. I am ER+, Her2-. Used to be called HER2 negative, but now they have created a new category, HER2 low, and I have that (+1 on HER2), unfortunately.
ya me too! I was her 2 negative and now am her 2 low!!!! I heard that wasn’t a “bad” thing because it gives us a few more treatment options!! Her 2 positive seems to respond to the meds better ( or from what I read) so maybe a little of the her 2 isn’t so bad! I also found out I habe a PIKA3 mutation on my new cancer ( unsure if it was there on OG diagnosis in 2015 because I never had genetic testing done) ughhhh
Dear TC- You write that you have many PET scans. What is your thinking on the risks of multiple PET scans weighed against the obvious?
I am also PIK3CA yet this Health Unlocked does not recognize this. I started Piqray last month. My tumor marker already went down some. Any of you been on it for long?
I’m on Verzenio right now!!! How are you feeling with Piqray?
mine came back in 2012, first occurrence and chemo in 1992. It was in my adrenal, but Ibrance knocked it out about 4 years ago.
Then my markers started going us, not into danger zone, but steadily for months. Now we find it’s in my pelvis. I feel your pain.
My first round of BC was in 2013, 2 surgeries, 4 rounds of chemo (3 with the "red devil"), 31 days of radiation and then 7.5 years of arimadex. I was told that I didn't need to stay on arimadex any longer, so I stopped. Within two months after stopping, felt strong pain in a rib, but every doctor thought it was a pinched nerve. Finally, in September 2021 I was really having trouble breathing. After a lot of tests, they determined the BC had returned but it was mediastinal, pressing on my windpipe. Apparently, only about 2% of MBC cases are where mine is, and the location limits the available treatment options. There also appeared some possible growth near the rib where I felt the pain. I have now been on faslodex and Ibrance since November 2021 and am doing great. Tumor has shrunk significantly and bone areas appear to have resolved themselves. And, I can breathe! I do lots of physical activity, including strength training. I'm 67.
Oddly enough, the markers never show me as having cancer...
Thanks for all the hopeful stories on this site!
story sounds almost identical to mine! Ugh this is so frustrating! Especially when we think we are “cured” to be told it came back
Slight increase in tumor marker
Tumor Markers Trodelvy 
Good news on tumor markers
RISE IN TUMOR MARKERS
