Cancer tumor marking rising but PET shows no progression of disease

[Sjjohnson52]

Hello. I am taking letrozole and iBrance for 3 years. My cancer tumor marker has been rising constantly (over 300 now) for last 6 months. However, PETscan shows no disease. Anyone experience anything similar? Is there some other scan that might show where the cancer is growing. Or could the marker be pointing out some different issue?

[Thrifty51]

My journey sounds similar to yours. I had 3 PET/CT scans that showed no progression even though my tumor markers were rising. I really did not have any unusual symptoms but the progression was discovered on my latest PET/CT scan in October. (The fourth one after the markers started going up) I have been having scans every 3 to 4 months since my diagnosis of MBC in Nov. 2018. I was originally bone only though in many different places. Kisqali allowed me to have 20 months of NED before TM started climbing and the cancer showed up in the lining of my stomach confirmed by a biopsy. I have HER2-positive MBC and I am now on 2000 mg of Xeloda per day. I have been feeling good for the last few days on Xeloda but it took awhile to work out the dosage.

My doc did send a tissue sample to Foundation One and I do have PIK3CA mutation. When the Xeloda quits working then Piqray will be my next line of treatment. I also went to MD Anderson for a second opinion in December and they agreed with my treatment plan and advised that there are at least two more treatments available after Piqray as well as a great number of trials taking place now. The doctors at MD Anderson were very encouraging as to the possibility of many more years for me. They did mention that they have 40 oncologists on staff that concentrate solely on breast cancer. I was amazed at that. I saw Dr. Tripathy who is head of the department for Breast Cancer Oncology.

I really hesitated to share my journey with you as I don't want to alarm you but I think we can make better decisions with arming ourselves with more information. Please keep in mind that we are all different and this may not be the case with you and I hope it isn't. It is my understanding that a PET/CT scan is the best diagnostic tool we have.

[Partia in reply to Thrifty51]

40 oncologists....that is amazing!!

[Sjjohnson52 in reply to Thrifty51]

Thank you for your comments. You are right, we are all different but I am grateful for the information because it allows every possibility to be checked. Praying for your continued recovery.

[ChrisVict in reply to Thrifty51]

Thank you for this insight. My tumor markers were rising and my bones mets was diminishing on Affinitor/exestamane but I developed liver mets. I was put on XelodaNow waiting.

[Sjjohnson52 in reply to Thrifty51]

Since your post, and another month of tumor marker rising, I insisted on having an upper GI done and they did biopsy. And yes they discovered cancer cells in the lining of my stomach. Thank you so much for sharing your story. It really helped to pinpoint the problem much sooner than we would have been able to otherwise.

[Thrifty51 in reply to Sjjohnson52]

I am glad that you now have an answer to the rising markers although it was not what we had hoped for. My understanding is that it is somewhat rare for ductal breast cancer to spread to the peritoneal area but here we are!

This certainly verifies the value of this forum and the ability to share information. I hope you find a new med that has few side effects and works quickly. Let us know your course of action when you get a chance.

Best wishes to you.

Audrey

[Partia]

I don't know but just recently mine went above normal. I've been on ibrance and letrozole for four and a half years. I take the ca 15-3 tumor marker test. I just had scans yesterday and I have another one tomorrow. So I don't know what to tell you but good luck

[Sjjohnson52 in reply to Partia]

Thank you Partia!

[MyMiracle13]

Hi. I have the same experience as Thrifty51. Tumor markers showed upward trend for about 3 or 4 months but scan showed no progression. The next scan though revealed brain Mets. Maybe the lesions were too small to show on the previous scan.

[Sjjohnson52 in reply to MyMiracle13]

Thanks so much for your response. Blessings to you!

[SeattleMom]

Hi, SJ,Which tumor marker are you referring to: CA 15-3 or CEA?

Linda

[Sjjohnson52 in reply to SeattleMom]

CA27-29

[StE72]

I too have same sort of situation. Been on Ibrance 125 / Letrozole since June 2018. Latest CT scans over past 18/20 months show everything stable....tumour markers increasing slightly each time apart from one dip when it halved! Oncologist just say they look at ct scan in conjunction with blood tests...and what we tell them....so I don’t think there is a clear answer. If you do feel different or show any new symptoms then you must talk to them.My tumour was behind original scar tissue so it didn’t show up, which by then had done its ‘dirty’ work and metastasised!... take care.......

[Sjjohnson52]

Interesting.....behind original scar tissue. I do have an issue with extreme scar tissue. Thanks for info. Yes I am watchful for any new symptoms. Thanks for responding!

[WordNerdSharron]

I've not been on Piqray yet, but I have the mutation, so it's out there in my future. My tumor markers started to skyrocket on Ibrance and Fulvestrant. Turns out it was likely liver involvement that was confirmed in more detail by a different kind of CT scan. The tumor marker numbers been pretty much cut in half with every cycle of Abraxane. I'll get my latest PET results next Tuesday, so we'll see. My PA also told me not to look too much at the liver numbers right now because Abraxane can affect those. I've been so pleased with MD Anderson. I'm glad you were able to go there for a second opinion.