FES PET/CT scan insurance coverage
Has anyone with traditional Medicare had a FES PET/CT scan? I can’t get a definitive answer on payment for the procedure from either the hospital or CMS. Both say that an FDG PET/CT is covered so the answer is “probably.” Given the cost (more than FDG) I’m worried about having it done without knowing for sure.
After two MRIs a 25x13x22 mm spot in my posterior acetabulum has been diagnosed as a met or a benign bone lesion which mimics one. My MO said that an FDG PET is sure to light up because of the inflammation and degenerative changes that can be seen on the MRIs. She is hesitant to biopsy because of likely damage to the hip joint and would make a diagnosis on uptake. When I asked about receptor conversion she said that with no FES uptake the lesion would be monitored by MRI. This plan makes sense to me but the six insurance denials I had to fight in the past (pre Medicare) make me pause.
Thanks in advance for any information.
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Medicare just denied my scan. My doctor is appealing the decision. The cost is about $5,000.
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@maggie15 there are some cancer centers that are doing FES PET scans as part of clinical trials (presumably to test their utility in diagnosing HR receptor positive cancers versus the standard FDG PET). So you might try that route and find a place that will do it for free. So long as you aren't on Faslodex or another SERD you might be a candidate. Link to current multi location study below.
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Thank you @bighubs, I went ahead and had the scan yesterday. I'm not eligible for the clinical trial since they are trying to figure out what the "looks like a met" lesion is or find something else that is easier to biopsy.
Hi @thebar1957, Did you already have the FES PET? If Medicare denies mine I will appeal. My bill would be about $7,000 but with the ortho onc's estimate of a 70% chance of a biopsy causing a broken hip which would need "limb sparing surgery" I decided the price of remaining mobile was worth the gamble. Right now the cortical surface is intact. I had a biopsy of my mandible several years ago and I was shocked at the amount of bone that the oral surgeon drilled out (he woke me up to find the painful spots.) I guess they have to use an acid decalcification process which requires a large sample. That turned out to be osteomyelitis. In the past two years I have had two bridges placed there; the thin layer of remaining bone is problematic.
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I contacted the University of Utah who offered the FES PET clinical trial and was told by Dr. Covington that they had to temporarily pause their FES PET studies as they were unable to get the materials necessary to produce FES due to supply chain issues. He said it may take another several months to resolve. Once resolved they will be recruiting patients with recently diagnosed invasive lobular carcinoma. I'm not sure I would qualify for their study as I was diagnosed in ILC in 2013 and mets in 2021. My oncologist is appealing the denial by my insurance company who said the FES PET was experimental.
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Also, my oncologist's nurse said being on Faslodex would not be an issue for having the FES PET scan.
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FES PET has been FDA approved and added to the NCCN guidelines. This article summarizes situations for which it is recommended.
From what I have read taking AIs is okay for this scan but tamoxifen and faslodex require a long washout period. There might be current Cerianna manufacturing problems but I found out the delay in my scan was caused by a mixing issue at the hospital pharmacy sending the tracer. The lesion in my hip did not light up which indicates it is not an ER+ met. It is still indeterminate but my MO now feels it is safe to monitor it for growth by MRI. I have radiation induced pulmonary fibrosis which has ER receptors in my right lung and that lit up in the same places it shows on my chest CTs so it seems to work as described.
Denials from insurance companies are a pain. My post surgical pathology was denied (since I had already had pathology done for my biopsy!) as was my Oncotype DX. Both were paid on appeal but I think they sometimes deny hoping they will get away with it. The appeal doctor for my oncotype questioned whether the denying doctor (a pediatrician) really had a medical license since what she said was so off base.
I hope your denial is overturned.
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Thanks Maggie for reply.
My oncologist left a message for me yesterday. My scan nurse was incorrect about Faslodex. I would have to stop taking Faslodex for two months before I could have the FES PET and my Oncologist doesn't want to take me off it for that long right now.
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An update: Medicare paid for my FES PET/CT. My oncologist was very thorough in the medical records she sent: two previous MRIs, the second done by a more powerful 3T machine, evaluated the lesion; the hospital bone tumor radiologist and a peer second opinion from MSK both concluded it was a met or something that resembled one; an ortho onc calculated a >70% chance of hip fracture if it were biopsied; an FDG scan would light up my entire pelvis due to the tendonitis and degenerative changes shown on the MRIs and provide no useful information; the situation ticked off three of the NCCN scenarios for which FES is deemed "appropriate."
I did have a moment of heart failure when the cost of the procedure appeared at over $22,000 on my patient portal since that was more than three times the estimate I had been given. It turned out that it included only one of the 6 units of contrast needed (FDG uses 8 units I learned) and did not include radiological interpretation. Medicare estimates are not yet under the umbrella of the No Surprises Act but I travel to a large teaching/research hospital and discovered they have a compliance department with which I filed a complaint. A senior executive in the billing department contacted me and told me that there would be employee retraining and an upgrade of the estimate software. In the event that Medicare didn't pay I would only be responsible for the estimate I received.
If you don't have Medicare, under the NSA you can ask for a pre procedure "good faith estimate." If the bill is more than $400 greater than the estimate (with no unforeseen complications) it can be filed with CMS for arbitration. This is good to know when you are receiving expensive medical treatment.
My bone lesion is still indeterminate (a met with flipped receptors, from an unknown primary, malignant or benign bone tumor) but the most likely cause has been ruled out and it will be monitored for growth by MRI.
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Update: My oncologist was able to appeal my FES scan denial and it's scheduled now for Nov 20. In the meantime, my dr asked me to stop taking all my meds which includes Ibrance and Xgeva in addition to Faslodex. So I'm off Faslodex for 8 weeks and off Ibrance for 4 weeks. Not so worried about Xgeva as I get the injection every 3 months. Has anyone been off their meds for 8 weeks and if so, what was the outcome?
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I went for FES Pet Scan on Nov 20 and was told I had to be off Faslodex for 28 weeks, not 8 weeks, in order to get the best results. I was very disappointed especially because I’ve been off my meds for 8 weeks now.
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@thebar1957, I’m sorry you were given inaccurate information. Faslodex (as well as tamoxifen) binds to estrogen receptors so the FES tracer would not attach to receptors without the 28 week washout. My MO was looking for something other than my acetabulum lesion to biopsy but the only thing that lit up was areas of my lungs with radiation induced pulmonary fibrosis. It turns out that PF also has estrogen receptors.
FES PET may be useful in certain situations but it definitely has its drawbacks including inability to find liver mets. I hope the 8 week break in your meds doesn’t adversely affect you.
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