Is this normal protocol?

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Billynda
Billynda Member Posts: 121
edited June 2014 in Stage III Breast Cancer
Is this normal protocol?
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  • Billynda
    Billynda Member Posts: 121
    edited June 2010

    I saw my onc yesterday and asked him when would I be getting another PET/MRI/CT whatever.  He said whenever we feel it's necessary, no set time.  I said, so just listen to my body and let you know if I feel something weird is going on?  He said, no not necessarily.  I said, so just keep my fingers crossed and pray a lot?  He just kind of laughed and said we'll just keep checking the blood work.  I'm not sure If I'm comfortable with that.  Not like I want to get scanned every month or anything, but I'm just feeling a little bit vulnerable now. 

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  • helena67
    helena67 Member Posts: 357
    edited June 2010

    I know how you feel! Some Oncs seem to do regular scanning but most do not. Mine does not. By not scanning all the time, you avoid a lot of radiation. I think there may even be some studies out there that show that too much scanning also can cause cancer.

    It's not easy, I felt very strongly about getting checked in the beginning. But that feeling slowly dissipated with time.

    Take care.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited June 2010

    I don't get scanned either. It is standard protocol.

    Like Helena, at first I really wanted scans all the time. Now my thinking is - if I am feeling good, and if early detection of mets doesn't affect prognosis, why would I want to know. And I could not imagine the stress of regular scans!!

    If you are feeling good, and your Onc doesn't find anything worrisome in your blood work, I would take that to mean that all is well! 


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  • Pure
    Pure Member Posts: 1,796
    edited June 2010

    I would insist on scans b-c you had that tumour o that diassapeared after chemo.Your docotor admitted that could have been mets but will never know. With that said once you have mets they scan you frequently to make sure your still ned and no other spread has occured. I think most stage 4 girls would concur with that.

    Hopefully that wasn't mets but since they didn't know I would want to continue to be watched.

    I talked with my doc yesterday about scans they said none unless I have paid but I will have tumour markers.

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  • caaclark
    caaclark Member Posts: 936
    edited June 2010

    My docs do not do scans or bloodwork.  At first that freaked me out but they say that tumor markers are not always reliable.  As for the scans-unless I have symptoms they don't scan.  For the first year or two out of treatment I really wanted scans done but now I am good with not scanning.  I think for me the anxiety it would produce would be hugely negative.  But, I think it depends on your docs.

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  • NancyD
    NancyD Member Posts: 3,562
    edited June 2010

    I had a PET/CT scan a year after I finished chemo. That was last August. I asked for that because I was planning my breast reconstruction and wanted to know if I was still NED. If I wasn't, I wouldn't have bothered with the recon. Sure, I know I could be developing mets now, but it was a question of finances and timing then. Whatever time I have as a Stage III survivor with my recons is my bonus time.

    I don't expect anymore scans unless I have symptoms or my tumor markers rise. I see my onc every three months, and my bloodwork is done then. I'll be seeing him next in a couple of weeks.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited June 2010

    My onc doesn't do scans unless there is a reason, symptoms that are persistant, bloodwork that looks abnormal or something indicating there might be a problem.  My onc is very thorough and I trust him so I am comfortable with not being scanned.   Also, the insurance companies will not always allow scans, this plays a part in the decision by the dr's as well.

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  • Charley
    Charley Member Posts: 255
    edited June 2010

    My onc doesn't do scans either.  I didn't even have one at the beginning.  I just finished chemo and I, like you, am worried ... but my onc is supposed to be the best in town and I trust him. Hopefully with time, like these other ladies, I will be comfortable with it as well.  I think when you are not far out from original dx it hard not to worry and think about reoccurrence.

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  • nowords
    nowords Member Posts: 423
    edited June 2010

    My oncologist does blood work ... no regular scans. She did say if symptoms merit a look, then she does them.

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