Hey everyone! I’ve been going through treatment for metastatic breast cancer hr+ her2-. I’ve been on ribociclib and Letrozole for 7 months now. Had a pet scan after 4th round and it was pretty good news. But a month ago my ca 15.3 levels started rising, it was 41 to 45 and this month it was 55. Started off my treatment with 66. I’ll have my next pet scan next month and now I’m just terrified what if my treatment stopped working. Does anyone have a similar experience or situation? A calming story would be really nice to hear. Is it possible to cancer markers rise and pet scans be stable?
I knew nothing about any of my blood test results as this is information not generally shared. At one appointment I was given the result by a registrar and asked her to explain it. At the time I was nearly a year into my treatment for MBC and scans showed me stable
She told me that the test was a guide as some people’s markers were very accurate while others were not - i.e. showed lower or higher but not a reflection on how the treatment was going. She said it was too early to determine how accurate they are with me and that they are another ‘tool in their arsenal’
I will be having my next quarterly scan in two months and will ask about my bloods today when I have my telephone consultation
I’ve been on ribociclib, denosumab and fulvestrant and this week will be round 19 and as far as I know all is well
If it helps perhaps you should have a conversation with your oncologist regarding the meaning and accuracy of results
I’m sure others will be able to share their experience with you
Take care
Jan
Hi there. I’ve been given the same advice as Jan. my oncologist does not use them but uses the scans to monitor. She explained this to me for a good 5 minutes when I asked what mine were. When I asked again, she advised me my marker was 370. I decided that info didn’t really serve me well, so I’ll trust her profession judgement and not sweat it in future as it’s not an indicator she follows for BC.
Hi Natalie1,
I can confirm what the other 2 response have said. My markers have gone from 49 to 1533. I went in to absolute panic.
The oncologist said that the markers don’t always tell them everything and cant rely on them. She said that the scan is what they rely on to tell them what they need to know.
She gave an example whereby in prostate cancer the marker is very specific to that cancer and can therefore be relied on to show that the cancer has spread. Whereas the markers for breast cancer are non specific so a raised marker may mean nothing at all and that peoples numbers vary all of the time.
I have tried to take comfort in that myself and that she is the professional and wants to see scans to confirm if anything needs to be worried about or not. My markers have been doubling month on month but they weren’t concerned enough to have a scan simply based on the numbers.
I hope that helps a bit.
Take care x
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Thank you for sharing your experience @drew, it really did bring some peace. It’s always calming to hear similar stories I think you would agree to that. I hope your scans will be good news for you!
Thank you @jan.amityville, round 19! This is fantastic I hope our current treatments will work for both of us many many years!
Hi @curlyk, thank you for your kind response. I think it is a wise choice that your oncologist decided not to mention tumor markers. My oncologists also do not mention them a lot. But as I can acces the bloodwork on my hospitals portal, I always overthink about it.
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