Increased Protein Levels

Sleuth01
Sleuth01 Member Posts: 42
edited June 2014 in Stage III Breast Cancer

Please forgive my ignorance but none of my doctors has really explained what is happening to me. I was diagnosed with Stage 3 breast cancer last August. I had a mastectomy. They found 7 bad nodes. I had chemotherapy and radiation therapy. I do not want to take the estrogen inhabitors. I recently had a blood test. A month later my oncologist called to tell me that my protein levels had risen and she wanted me take another blood test. I did and the results were the same as the prior test. She said that raised protein levels could mean that tumors are growing. She wanted me to have a PET scan but Medicare would not approve it. All they would approve was a chest CAT scan. I don't understand why they wouldn't approve the PET scan. I was told it was because of my diagnosis of breast cancer. Anyway the scan I took showed no tumors but a spot on my lung which she said must be from the radiation. She said that since I was not feeling sick I should come back for another blood test in two months.

She mumbled something about Medicare knowing that even if they found tumors, there was nothing that could be done. I don't know what she meant by that.

Does anyone have any experience like this?

Thank you so much.

Dale 

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Comments

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2011

    It would be nice if your doctor advocated a bit harder for you to get a PET scan. My doctor did when my insurance company initially denied her request for me to have one.  I don't know what she told them, but she got me in....second if there was a tumor in your lung there is a lot that can be done to treat it.  It doesn't sound like your doctor is advocating for you.  I had never heard of high potein levels meaning tumor growth. I think I had high levels at the beginning of my ordeal, before chemo and sugery. Medicare likely did not approve a PET scan because of the cost of this scan. Sorry you are having to deal with this! 

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  • diana50
    diana50 Member Posts: 2,134
    edited September 2011

    you have a right to your medical tests and records.  ask about your liver enzymes and if they are in normal range. actually, find out what blood work your oncologist does; including if she does tumor markers. i don't know about elevated protein scores or what that means.  my onc ususally does complete blood count, liver enzymes, and tumor markers. calcium levels are important to look at also. 

    if i was you; i wouldf make another appointment with your oncologist and go in there with some questions and ask for answers.  also, there must be other docs in the area who see medicare patients. there is a standard of care for breast cancer patients; especially stage III.  Usually a PET scan is ordered when there is indication of mets; either blood work....tumor....however; CT scan of chest and belly work good too. 

    you have a right to good care and to have your questions answered. understanding what is going on in your body is part of "self care"  and a great way to fight cancer.don't be afraid to ask questions; you are the patient .

    good luck.

    diana

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  • Sleuth01
    Sleuth01 Member Posts: 42
    edited September 2011

    Thanks for your reply.

    First off, it is hard to find doctors in NYC who take Medicare. With each cut they make to what the doctors receive, fewer and fewer doctors will take it.

    My mother's friend who lives in FL has breast cancer. They found another cancer but Medicare would not approve a PET scan for her either.

    My oncologist does thorough blood works. I should ask her particularly what she checks for.

    They did find a spot on my lung but the doctors thought it must be from the radiation. For some reason, that didn't seem to bother them, but it bothers me. I am going to call her tomorrow and make another appointment just to talk. I would like a better explanation of what is going on. There is nothing I can do about Medicare, which will only become more limited as they keep cutting the budget. Not a good time to be old, sick and poor. Then, again, is it ever?

    Dale 

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  • Sleuth01
    Sleuth01 Member Posts: 42
    edited September 2011

    I had a PET scan in October of last year. It was after my surgery and before I started chemo. Medicare paid for it with no problem.That is why I was so shocked when they denied it this time.I was told it had something to do with the diagnosis which was breast cancer. I presume that was the same diagnosis as last year. I may call Medicare as ask why it was denied. I got some story from one of the people at the hospital who does the pre-approvals with Medicare. I find that hilarious because when I called Medicare before the test, they told me that they do not pre-approve anything. The whole thing is very confusing. I have always found Medicare to be confusing.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2011

    I'm glad that you're going to schedule another appt to talk withyour onc.  It's so important to understand what their concerns are and to get a chance to air your own!

    I'm really confused about the "high protein" levels.  I've never hear of a test for this.  Can you tell us what the specific items are that they list on your lab sheet?

    As for the PET scan, I'm not a believer in them anymore.  I'm sure they have their place but I was in a study where they are trying to determine if they can be used to measure the progress of BC during neoadjuvant chemo and it didn't work for me.  The various PET scans would find things that turned out to be nothing. But it never indicated the number of lymph node involvement that I had. 

    Spots on the lungs are not unusual.  I have one and it has remianed stable.  Many of us have lung nodules that are from past colds or other illnesses.

    Wishing you peace and let us know what the onc says!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    I'm sorry your having to deal with this, as a cancer patient I think we should never be turned down for scans.  I can't help with the protein levels, never happened to me.  I do have a spot on my lung they found during a scan, have one on my liver too, apparently they're very common and they turned out to be nothing.  We're here so come here often.

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  • Sleuth01
    Sleuth01 Member Posts: 42
    edited October 2011

    Hi,

    The protein levels are "tumor markers." That is the blood test they use to see if there might be tumor activity. 

    Apparently, these tests are not nationally recognized so Medicare does not pay for a PET Scan based on this test. They paid for my PET Scan last year because it was used for staging after my surgery and before my chemotherapy.

    They decided that the spot on the lung was most likely from radiation therapy and, therefore, not cancerous.

    This is from my recent visit with my oncologist.

    Dale 

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