Need advice on CT PET Scans? Did you?

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Momojcbc
Momojcbc Member Posts: 94

Hi- I am starting to get concerned about not having these scans. When they did my MRI they found more lymph node involvement and satellite areas in the breast. So now I have this terrible feeling that it has spread more. The RO said he wanted it done but my MO said she just wants to start chemo and she isn't worried about it?

Advice please?

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  • live_deliciously
    live_deliciously Member Posts: 346
    edited March 2017

    i had a CT/pet after surgery. It was peace of mind for me. My surgeon wrote up the order after I told her I was scared it had spread. I'm sure the ro could order it for you if you want.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited March 2017

    My MO told me that those scans are normally only ordered if someone is symptomatic or has signs leading to concern about metastasis. He stated that there is a lot of anxiety, radiation, and cost to do them without justification.

    Of course - that made sense at the time. Now I do wonder and worry. I will have a repeat MRI after chemo. And surgery is yet to happen as well.

    I suppose the results of those things will determine whether I (or anyone else) wants more testing done.

  • Italychick
    Italychick Member Posts: 2,343
    edited March 2017

    I had a post surgery, pre-chemo pet scan. My doctor wrote it up for insurance as a staging scan and it was covered. I won't lie, it was a very stressful time doing it, but if the find you are stage 4 it could change your treatment plan.

    Best of luck.


  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2017

    My MO ordered one after my initial lumpectomy and sentinel node biopsy revealed multiple positive nodes. She said sometimes there's a lot of push-back from insurance companies but mine was a staging scan and they approved it, no problem. It was an anxious time, yes, but I wanted to know what I was dealing with, Stage III or Stage IV.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited March 2017

    I had a pet/ct scan after my surgery results showed 1 positive node. I swear going through that was the darkest time of my life. I was convinced it had spread. It didn't and even though a couple of things showed up that I would have been happy not knowing about (2 liver cysts and 3 lung nodules) I am glad I had it now. My family practic dr said it was the kind of scan he likes seeing lol

    Nancy

  • gracie22
    gracie22 Member Posts: 229
    edited March 2017

    You have not had surgery yet, right? if that is the situation, may make more sense to wait until after chemo and surgery for the PET. If there is cancer elsewhere, some insurances will not pay out for surgery (lumpectomy or mastectomy) for Stage IV. Recent studies show that patients do better long term if the original breast tumor is removed so you want to keep your surgical options open. The bottom line is: if you are ok with doing chemo (and if getting a stage IV diagnosis would not change that), go with your treatment plan as it is. It is possible that if you were technically stage IV, the chemo may resolve it without it becoming "official"--your post chemo/surgery scans may show no evidence of disease. Who needs the emotional (and possible insurance) damages of that diagnosis? You can always get the PET after--assume your doc may want to do one at that point anyway.

  • Momojcbc
    Momojcbc Member Posts: 94
    edited March 2017

    Thank you ladies. This does ease my mind. I did have a biopsy on the lymph node in my arm pit and it was positive. But no, I have not had surgery yet. The MO wants to do chemo first. I guess that is what i wanted to know, would it change her treatment plan. I guess I can assume not.


    Gracie- I never even thought about insurance issues. That is a good point. Thanks for the good advice. Honeslty do I really want to know..

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