Circulating tumor cells to determine risk of recurrence

@mdr3 DF and MGH don't do blood tests for circulating cancer cells either. No amount of self-advocacy will change that. I have requested testing and have asked how the heck I will know I have mets in the context of osteoarthritis and spinal fractures. Pain is not going to let me know: I already have it! Every person I know who had mets diagnosed, found out through imaging for another problem.

I have a nodule in my lungs that I scheduled a pulmonology appointment for. I didn't even tell my oncologist. Most older people have nodules so it is only a concern if it gets bigger. But bone metastases are going to be hard to determine given the pain level I already have.

I have the NCCN guideline for patients with "breast cancer metastic." There is a long list of tests for metastatic disease. But when are they done?! Here is the list:

CBC and comprehensive metabolic panel including liver function tests and alkaline phoshatase
Diagnostic CT of chest with or without contrast
CT w/ contrast of abdomen with or without pelvis (or MRI with contrast)
Brain MRI with contrast if CNS symptoms are present
Spine MRI with contrast if back pain or cord compression symptoms
Bone scan or sodium fluoride PET?CT, if needed
FDG PET/CT, as needed
X-rays of symptomatic bones and long and weight bearing bones abnormal on bone scan
Biopsy tumor or metastasis and test for biomarkers

I don't even see circulating cancer cells on the list! Of these, I have had an x-ray of hip due to extraordinary localized pain, and I have had a chest CT w/out contrast for other reasons. My kidneys cannot handle contrast so not sure what I would do if contrast is needed!

I understand. I've never been big on blood tests, more because my providers have not been either, They have offered me scans for any areas of concern. I should have been more clear -- referring mostly to anxiety over not having eyes on one's case more often than yearly, and also placing surveillance in the hands of primary care physicians, often with those providers having little or no hands on experience with cancer patients.

@windyshores did they do the breast cancer index test on you? You may have answered this before, if so, my apologies.

I had a breast cancer index test but "they" did not do it. I found out about it on breastcancer.org, printed out the paperwork, and took it to my doctor. It was not yet in the NCCN guidelines and my doc didn't know about it. She said she would use it with other patients from then on!

Thank goodness. We definitely have to be our own advocates. So your results showed that you did not need to continue the AI?

Yes no benefit but "high risk." They have since changed that label because mine was 5.7% which Oncotype classifies as low! My Oncotype risk was 6%.

I also did the Prosigna Assay at the 5 year point which had my risk closer to 9%.

My pathology had a lot of contradictions and posed a lot of concerns so at 5 years I wanted to do both tests. They used my post-surgical specimens from 5 years earlier.

I haven't heard of the Prosigna Assay but will write that down. I am at the beginning of my Letrozole journey. My Oncotype was 7%.

That's a great score! After 5 years I would do the Breast Cancer Index, not the Prosigna 🙂

Love our group, ladies! At Dana Farber and as @windyshores mentioned DF doesn't routinely do any blood work. But I'm considering doing this on my own but of course would have to have a script from doctor as tissue sample would need to be sent. At DF, no scans until a year from initial scan (mammo even though very dense and ILC) which is this Oct for me. I will stay in touch - just don't understand why docs don't use the tools available as early detection is all we have!

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