Stage 4 ladies - how often do you get scans done?

adymaria
adymaria Member Posts: 37
edited February 2020 in Stage IV/Metastatic Breast Cancer ONLY

I used to have scans done every 3 months, but now I do every 4 months because I was concerned about all the radiation I was being exposed to. Over a 2 year period, I will have done 7 scans (7 ct scans + 7 bone scans + 1 mammogram + 3 mris) I know MRI isnt radiation but it does have contrast which cant be great for your body. Sometimes I feel like even if my meds work, I'll just end up getting some other cancer from all these scans. I used to look forward to scans, but now I kinda dread them. I'm curious, how often do you all get scans and for long have you been getting scans? Are you concerned about the long-term side effects from the radiation?

Thank you.


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  • Linda11111111
    Linda11111111 Member Posts: 49
    edited January 2020

    Hi Adymaria!

    I've been getting a bone scan and CT every 3 months for about 6 years. I wasn't thrilled about all the radiation either but, after speaking with one of the radiology techs, I feel a bit better about it. She explained that the effects of radiation from scans take many years to happen. So, if you're middle age or above, chances are you won't live long enough to suffer them.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2020

    adymaria,

    I was dx’ed stage IV, essentially de novo, long story, 8 1/2 years ago. I can’t give you exact time periods but I went from having a PET scan every three months, to every six months, to annually for the past two years. Of course, if I have reason to suspect anything, they would scan right away. My mo suggested less frequent scans for the same reasons that you’re concerned about, radiation exposure. I was the one who felt a bit uncertain about less frequent scans but now I’m glad that I’m minimizing radiation exposure. Can you imagine if I’d been scanned every three months for 8 1/2 years 😱 ?

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited January 2020

    Hi Adymaria,

    I was scanned with CT every three months and now it seems every four months. Having said that, if I am having any symptoms they scan right away. I’ve had a few bone scans but they are pretty useless for me.

    The one question I would ask is why the mammogram? I spoke to my MO about that as they tried to call me in for my annual appointment not long after my stage IV diagnosis. As I suspected, rather pointless once you are stage IV.

    As to radiation, I don’t worry about that. I am more concerned about the impact of the contrast on my kidneys given the impacts of various treatments. As Linda indicated, the impact of radiation is much longer term than I feel I need to worry about.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited January 2020

    I do full body CT scans every 6 months. Brain scans just went out to a year, after 5 years of NEAD. I still get an annual mammo on my remaining breast, at the recommendation of my MO. I see my MO every 3 months and he checks tumor markers at that time. If there is anything suspcious showing up and/or I have a new symptom, we scan.

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  • gailmary
    gailmary Member Posts: 332
    edited January 2020

    I was wondering about scan frequency too. I am nead and scanned last week. Stable for last 2 yrs. Next scan isn't for another year now. I'll see his assistant monthly prior to faslodex injection and tumor markers.

    GAILMARY

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited January 2020

    I scan about every 6 months since my de novo diagnosis back in March 2017. So for about 3 years now. I made the decision to wait and my MO supported it. And same for me as with the other folks who have chimed in here - if there’s any odd symptoms or blood lab results, then we scan.

    I am not NEAD but I am “stable-ish.”

    Right now we are in a very annoying appeal and grievance process with Keystone First insurance for a Petscan since my last scans for the past year have not been very clear. I have never had a Petscan and find it so odd that insurance would fight so hard AGAINST it. It’s all about the $$

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  • pajim
    pajim Member Posts: 2,785
    edited January 2020

    In the early days of hormonal therapy, low TMs and no symptoms we scanned (PET/CT) when it occurred to one of us, maybe every 12 or 18 months. When the mets began to grow we would do a scan (bone plus CT) when my TMs start to rise, then again when they rise enough to worry. Maybe 3-6 months.

    Nowadays on various cytotoxic chemos it seems that scans (CT only now) come every three months. Got another on in two weeks and it's going to show progression. Oh well.

    If things are going well it's perfectly fine to scan for cause.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2020

    after my first two scans at 4 months and 7 months in, we decided to do them every 6 months.

    I do pet scans.

    Ive had 2 brain mris so far due to symptoms that turned out to be nothing. My doctor just asked if I wanted to do another one just for monitoring purposes and I turned it down. Dont feel like looking for problems right now.

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  • JACK5IE
    JACK5IE Member Posts: 760
    edited February 2020

    Every 6 months for me. The past 2 times have been CT Chest/Abdomen/Pelvis (oral contrast only) and a Bone Scan.

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