How Do Doctors Monitor Stage 4 NED Cancer?

He has them done but doesn’t give them much attention. I’ve asked and he states with my type of cancer it isn’t that important unless there is a big change!

Jacole C. Does your MO do scans?

Yes, my doctor does PET scans regularly, MRIs, mammograms regularly. I am stage 4 with metastasis to one small area in my thigh bone. I am NED. It has been 4 years

Yes, my Dr used tumor markers for the 1st year, and my numbers have never been higher than 17 I inquired abt this fact on a few occasions & my Dr would usually order the scans as well, so this didn't seem to be of any great concern, to her and so... I stopped mentioning it. Has anyone ever heard of a situation when a cancer patient's TM numbers have never been elevated past 38... even from the first time diagnosis?? ...my tm numbers have always been between 11- 17. I've asked a few professionals who say they have never heard of such a strange phenomenon. It indeed concerns me, since I learned that all #'s less than #38 signify normal (relating to tumor markers ) My oncology Dr. said she can only rely on scans & specific other test results- in my case. I now wonder about the rest of my lab results...are they reliable?? ... or are there (as well) - other values which are <unreliable>??? This doesn't explain; Why my t.m. #'s have never registered any signal of cancer ? Why aren't the tm#'s numbers a reliable source of data? Which, if any, of my other lab values* might < not > be reliable assessment tools??-certainly in this case? In my current situation, this knowledge is quite essential. Does anyone have any ideas or suggestions on where I might find similar case studies or other related information to research this uncommon anomaly* or strange type of 'disorder' ?? I have so many questions and need to find the answers. Thank you in advance for all your feedback/advice. ~Bonnie~

I have been told that some cancers don't show on tumor markers.

My markers started going up. The last lab showed they had climbed to 118. I started having pain in my left shoulder & the MRI showed a hot spot on my clavicle. For almost 2 years, I was on Ibrance & Letrozole. Because activity in the Mets started back up & my markers continued to climb, I am now on my 2nd month of Kisqali & Faslodex injections. My labs will be done again on the 27th. 🤞my markers are coming back down.

My initial diagnosis with MBC to liver was 18mths ago . My tumor markers have always been well within normal guidelines. I was started on Ibrance 125 and Anastrozole 1mg. My labs have held well and I have not had to change treatment at all so far. I was 64yo when diagnosed. Tumors markers still unchanged. After approx 6mths of treatment my PET showed initial tumor in breast- very small initially and multiple Mets to liver-6 tumors-were all GONE . Since then I rotate every 3mths with CTscans then PET scan . Praise God still clear to date!

That's awesome!

I wonder if this combo of treatment would work for me. I'm 60 now, diagnosed at age 59; primary MBC w met to the hepatic duct, after one year on 1st line chemo meds IV (with little to no bothersome sides -other than hair loss) the reg scans showed some progression -on liver lesion- so once Dr started me on 2nd line targeted treatment; Enhertu.' Three mos ago, and it's entirely too hard on me. I can't eat or drink, have severe vomiting, no appetite, am weak, shaky, and have hair loss - again- I am tired of the sides from this med. I need other options; I am waiting for the results of the recent CT to see if Enhertu' therapy is working or if there is more progression...either way, I hope Dr can< titrate this med down> to a less toxic dose... if I need to continue on it. I may suggest this combo* you mentioned with librance125mg & Astro 1mg to my Dr since it was a very positive outcome for you.. and in only 6mos. That's so awesome to hear! Best wishes to you♡♡♡

Correction ; to second med; Anastrozole 1mg*

My marker went from 118 to 193.2. Also, the results of my bone scan shows an uptick in activity & my ribs, femur & both shoulders. I'm just finishing up my last week of my 3rd month on Kisqali & Faslodex. I get a CT tomorrow & results on the 18th. 🙏

Lisa Z- did your numbers begin to go up after you started on the kisqali protocol? I am also in my third month of the letrozole /Kisqali protocol. I haven't had any issues with side effects, but my tumor markers have doubled since I started taking these medications. My oncologist keeps saying we should wait to see what the scans show in February but it's starting to feel like something is not working here.. 🤷🏼‍♀️I was curious about your situation as we seem to be on a similar trajectory/ timeline of treatment. Praying u get positive results! 🙏🏻❤️

March A. Sometimes markers go up in the beginning, then start to come down. I did not experience that, but I have heard women talk about it in other groups.

As a 20 year Survivor, I’ve had experience with a doctor who watched my tumor markers closely and a doctor who waved them off as having not much significance. The first experience caught an increase in cancer activity that ch…

Marcy A I am waiting on a blood transfusion right now. My RBC, WBC & hemoglobin took a dive. I have not been on the Kisqali since this last Tuesday, per Dr's orders.

They check mine every 3 weeks but they have never been high

Monitoring approaches for stage 4 NED patients typically involve a combination of imaging scans and tumor markers, though the specific schedule and methods can vary based on individual cancer characteristics and doctor preferences. Many find it helpful to hear from others in similar situations about their monitoring experiences, so hopefully community members will share what has worked in their care journeys.