CA15-3 never shown my bc: Hello fellow... - SHARE Metastatic ...

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CA15-3 never shown my bc

R7777 profile image
21 Replies

Hello fellow warriors!

ever since my diagnoses ER/PR+ Her2- 2 years ago the results of CA15- checked on randomly have been in norm. Even before I started treatment. Has anyone else has the same thing that its not showing on this test? If so- what other rests should I be doing which may detect my problem.

many thanks

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R7777 profile image
R7777
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21 Replies
Aprilfoolz1 profile image
Aprilfoolz1

R7777, I have had the same experience . My tumor markers have never been elevated . When I was stage 1 (node negative ) in 2008 and also when I was dx stage IV in 2019. In my case they are completely normal and have been that way consistently. I am er+ pr+ her2- and have IDC. I have had clear pet and Ct scans (no evidence of active disease ) for over 2 years now. Fingers crossed and knocking on wood that this continues . My MO has this included in my monthly blood panel , as well as a CEA marker (also always normal ).

R7777 profile image
R7777 in reply to Aprilfoolz1

Thank you so much Aprilfoolz1 for your reply!

So we have the very same diagnoses. How reassuring and encouraging is that you had conquered this!! From stage IV to NED. Congratulations!!!!! And yes- may it stay like that forever!!! 👍🏻🙏🏻 🍀🍀🍀🍀🍀

Has this been achieved only with just SOC? Will try to search your previous posts. I would love to know more.

Anyway how strange our CA has never been shown on the CA15-3 markers! So I guess we just go on by the scans.

Aprilfoolz1 profile image
Aprilfoolz1 in reply to R7777

I started Ibrance and Fulvestrant 11/2019. I believe this is SOC. Scans every 3 months. Scans showed treatment was working as the cancer areas diminishined in size and metabolic activity for the first 3 scans and nothing has shown up for the past 2 years . I still receive both a Petscan and Ct scan with contrast every 3 months. Once stage IV, always stage IV - my oncologist wants me to keep in mind that microscopic cancer cells are floating about but have not set up shop currently (so to speak ). My oncologist also told me early on that stable disease (unchanged in size but not larger or spreading ) is what they hope for , or at best scans showing no evidence of active disease. I don't expect to stay NEAD forever but hope to for a long while ...don't want to jinx myself!

Oncologist also told me last month that I can start having scans less frequently (every 4 or 6 months ) but I'm not sure if that's a good idea or not . Next scan is in December.

Shafight profile image
Shafight in reply to Aprilfoolz1

this is great news!!!

mariootsi profile image
mariootsi in reply to Aprilfoolz1

I wish you Ned for a long time!

CatLady2022 profile image
CatLady2022 in reply to Aprilfoolz1

I’m amazed that your insurance allows you to have a PET scan every three months. I am only allowed CTs every three months and if they see something, they will do more extensive scans.

Aprilfoolz1 profile image
Aprilfoolz1 in reply to CatLady2022

I have never been questioned by my insurance company. It's a petscan and then a Ct scan with contrast , same machine (I don't get off the table but the tech comes into the room and gives me the contrast after the pet and before the Ct scan starts ).

CatLady2022 profile image
CatLady2022 in reply to Aprilfoolz1

It sounds like you have awesome insurance. I thought my insurance company was pretty reasonable but it is no where near as good as what you have obviously.

SabaAK profile image
SabaAK

Hi. My mom was diagnosed 18 months ago and her CA 15-3 was always within normal range.

Saba

R7777 profile image
R7777 in reply to SabaAK

thanks Saba! Its is strange indeed. Do you know if any other markers worked?

SabaAK profile image
SabaAK in reply to R7777

her doctor never ordered other markers. She is currently NED or as her doctor said there is a possibility that she was not metastatic at all! She had surgery 2 months ago and they removed the breast tumor. We will have next scan in December to see if there is any changes in lungs.

R7777 profile image
R7777 in reply to SabaAK

wow!! I hope he is right! wishing your mum all the best!!!

8576 profile image
8576

Don't worry about the markers. They vary among patients. The main report is the scans and they are stable.

Cheers, June S.

Totheriver profile image
Totheriver in reply to 8576

my oncologist does not go by markers and hardly ever checks them. Scans and bloodwork.

8576 profile image
8576 in reply to Totheriver

Sorry, I must have sent it to the wrong mail. Mine doesn't check the markers either.

Cheers, June S.

Winter-Flowers profile image
Winter-Flowers

same here :( the only reason my ox finally agree to do Pet Scan was lower back pain and minimally increased levels of calcium in my blood. Otherwise, all normal!

LadyKatarina profile image
LadyKatarina

I'm four years in (E pos) and never had elevated markers either. They rarely check them.. Scans are the way to go for me. Some cancer cells do not produce the cell markers. My onc delays the PET scan time sometimes--she sez my cancer is very slow growing. Maybe over time you will learn to trust that process as you understand your cancer.? Best to you!

Red1246 profile image
Red1246

Don’t know if this helps but I have CA-15 done every month with other bloodwork and they are usually within the normal range. It’s my understanding they are not definitive for finding metastasis - scans are more precise. I’m unaware of other useful labs as my nurse practitioner requests mine and covers what’s needed. Most important for me are wbc levels as I’m on Ibrance and need them to be high enough befire sysrting the next cycle. Also as Ibrance and I get drugs are hard on kidneys, we always look at the kidney function numbers.

You may want to discuss with your oncologist or NP what they deem important to test. And ask questions.

R7777 profile image
R7777

Thank you everyone for your answers and wish you all very best of healing!

Urca profile image
Urca

I have had the same results. My tumor markers have never shown my cancer, not even whent it became metastatic. I was found a metastasis in the liver during abdominal ultrasonography in June 2020. My blood exams have always been normal: CA 15 and CEA marker

rubyc1234 profile image
rubyc1234

In almost 5 years my oncologist has never used markers.

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