Who had mets that were not detected with a pet scan?

What kind of imaging showed the bc last December? Why was it called ILC/IDC? Are you at a major cancer center?

9lives70, I've never had a PET scan, but did have mets recently diagnosed via bone and CT scans. I understand the feeling of chasing these worries down a rabbit hole, as all my testing started after an incidental finding on a CT in preparation for my DIEP flap surgery. From there I had x-rays, more CTs at two different institutions (my first radiologist missed the mets we were looking for), and finally another bone scan. Interestingly, what we initially found (spots on my spine) turned out NOT to be mets. Instead, they're on my ribs. And for the first time ever I had tumor marker tests done last week, and they're all in normal range. Yet we know I have mets, so for me I don't know how reliable those tests really are.

Because I physically feel good right now, my new MO has proposed we take an active surveillance approach, so no treatment at this moment until I start to feel bad.

I tell you all of this because you do have a choice in this testing. If the PET is affordable to you and would put your mind at ease, then by all means go for it. But if it's not in your budget, and if you feel physically good right now and you are emotionally comfortable waiting, you could ask for more blood tests or scans again in a few weeks or couple of months to look for progression. What we accidentally found in my CTs turned out to be nothing, but we didn't know that at the time and I panicked about spinal collapse and paralysis, I stopped running and doing yoga.... And even now, with a mets dx, I'm choosing not to jump into treatment because i feel good, and chemo and rads will make me feel bad. I'd rather enjoy these good moments as long as possible.

Good luck with whatever you decide and I hope for negative results for you

9 lives, do you have other inflammation that could be causing the levels to rise?

9 lives

my CA 125 was slightly high also , pet scan was denied but my MO ordered ct scan of pelvis,abdomen and thorax with a benign cyst causing the elevated 125.hth.Ct scan which you already had should be enough in my humble opinion???

HI there, if your doctor thinks the PET/CT is warranted they should get on the phone with insurance company and seek a peer review to overcome their denial. Often when you fight a first decline and doctor submits additional paper work, they will overturn it. Ask your doctor to do that.  Good luck.

9 lives, the only other thing I can think of is to write in to the insurance company yourself and appeal the decision. sometimes that can work and write into the insurance board. directions on how to do that should be on your denial of service form. also you can try calling radiologist place and ask what the cash price is without insurance. Often that can be negotiated. I'd try both those things. Good luck and sorry you are having difficulty

9lives, I want to clarify something. You said that "ILC does not effectively take up the contrast used in the pet scans", but in reality that is only the case sometimes, not always, and most ILC mets are FDG-avid. So PET can still be useful with ILC. It is important for the interpreting radiologist to be aware that the patient had ILC (it may just say breast cancer on the order), so he/she will scrutinize the CT portion of the scan to check for non-avid mets. He/she should also look at various possible ILC mets locations that are not typically seen with IDC. In your case, with ILC and rising CA 125, peritoneal or ovarian mets would be the concern, correct? If those areas were checked using CT with contrast, and nothing showed on all the other scans, I think you have done it all. I hope your TMs go back down for good.

(My statements about PET for ILC are based on notes I took at the ILC Symposium 2016, and reflect my own understanding. Please consult the literature and your own experts to verify and apply.)

I had two new tumors show up in my breast just above my primary tumor (I have never had any surgeries because I was diagnosed at stage IV de nova). One of the new tumors was actually visible as a lump, but neither showed up on the PET because they were right over the already darkened spot of my original tumor. It was really weird for me that this expensive test was less informative than my own eye.

This, I guess, is part of the weirdness of living with MBC in the era of palliative care.