Another question..
 

What type of tests, if any, did your onc. run while you were going through treatment? I've had 4 cycles AC and now on weekly Taxol/Herceptin, with 3 to go before they re-run a PET. That will be the 2nd PET I've had, only goes from neck down to hips. No brain MRI, no tumor markers (first onc. said they "weren't relevant"!). I've now changed oncologists and see new one tomorrow. I've felt nodes and tumor shrinking myself, and old onc. agreed they had by her feel too, however I can't look into my body to see for sure. I've seen others on here have had bone scans, full body MRIs, etc., and now I'm worried I'm not getting the best care from this major cancer center out here in Calif. that I'm going to!! Haven't had surgery yet either, they will depend on PET apparently. I have 2nd opinion schedule for January.

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I never had any scans during treatment. Had Echocardiograms every few months to be sure no damage from Herceptin. Also get tumor markers. But not all oncologists think they are valid and they can result in false positives, apparently. I believe my doc is ambivilant about them. Still have blood work done.
I believe the tests we receive are based on individual situation. Have a discussion with your doctor as to the reasoning used. And of course, a second opinion will offer peace of mind.ETA: keep the faith!

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My experience with testing was the same as Bonnie's- bloodwork including tumor markers (CA 27-29). It wasn't until I had finished Herceptin a year after diagnosis that I had a PET scan (which showed arthritis only) and a CT of head/brain. My onc said the chemicals from treatment and the radiation could give false results on the scans, especialy the PET. Hope this helps.

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I had a bone scan and CT scan as part of my initial staging. The CT showed lesions on my lungs and liver. The liver was biopsied, and they found breast cancer cells there. I requested the brain MRI after the second CT scan, which was also after I learned that chemo doesn't cross the blood/brain barrier. I asked my oncologist how we knew I didn't have brain mets and she said there was no way to know without an MRI.

At least one other person on this site had surgery first, then a CT scan that showed that her cancer had metastasized. It would have been good for her to know that before going through surgery. One good about being Stage IV at diagnosis is not having to go through that--and the side effects, lymphedema, anesthesia, risk of infection, etc., etc.

I don't actually have any tumor markers, so they are not part of my monitoring. They did look for them as part of the initial staging, but have not done it since.

It doesn't sound like you're missing anything, but it's good you're getting a second opinion. That should help ease your mind.

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Thank you ladies, good to hear what your experiences were. I still think I'm going to push for the brain MRI, just to be sure. That is the only area not checked w/ a PET and tumor markers don't cover brain. I see new onc. today, am hoping he is more empowering, encouraging, and compassionate than the last one was. PLEASE GOD, this is hard enough!

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which major cancer center is it, if I may ask?

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I wish my oncologist would give me a PET scan. I only get bloodwork (including tumor marker #s) and an annual Breast MRI with my annual mammogram. also get a mamogram on my "bad" breast every 6 months.

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I just finished 3 weeks ago and just had a chest xray, bone scan and labs (tumour markers). All clear, some arthritis. I was told that there will be no other scan unless there is a reason to warrant it. Just lab works on follow ups. It is a scary transition but we will get past this. I had my scans done on wednesday and then had reconstruction on friday and I still had all the crap from the scans in my body when I went into surgery. That is alot of stuff that our bodies are trying to tolerate. Glad to be done and hope to stay that way. Good luck.

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Careful what you wish for too...I swear my bc is from many xrays as a child. The tests themselves can be dangerous. i had a PET done with my initial dx, and then a CT scan of the brain when, on chemo, my nausea could NOT be controlled for a couple of weeks. All clear! No other scans are planned unless I have symptoms.