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kotchaj Member Posts: 209
edited March 2023 in Stage III Breast Cancer

Hi all,

I'm one year out from surgery and my last bone scan which was NED. I had 21 nodes removed and 20 were positive so I'm a bit nervous. I had my bimonthly appointment the 3rd of January and asked about scans again. They were not sure that my insurance would cover because of a lack of diagnosis...really? While I'm so thankful to be NED, I want to know if I am still NED as it's been a year and this is still new. Insurance is covering it and my husband said if they don't, we will pay out of pocket (wondering how we're going to do that, lol) if needed just for peace of mind. I hate the thought of not having yearly scans just to make sure I'm still NED, but I will figure it out and deal with it if needed.

I just wondered how you all deal with scans? I want to know, I hate having the test to know, and I'm now waiting until February 15th to know, which is when I'm scheduled for CT and a Dexa scan.

I guess I'm still not trusting my body, or anything else yet. One year out isn't long enough and maybe I never will trust it. UGH.


  • kaynotrealname
    kaynotrealname Member Posts: 367

    I deal with it by trying to have as little scans as possible. Statistically speaking there is no such thing as catching a stage 4 cancer early so I figure if I ever get enough symptoms of something going on I'll get a scan then. But not before. I personally don't see the point. Shoot I didn't even let them scan me before my DIEP next week. It's radiation exposure and my surgeon was willing to do the surgery anyway so I declined. I'll do what my oncologist recommends but no more. I feel mentally more healthy being left alone as much as possible.

  • txlorelei
    txlorelei Member Posts: 68

    I totally understand how you feel. Intellectually I get why scans are usually only offered when there are symptoms, but emotionally the lack of new information (good or bad) just fuels my anxiety. It's been nearly 2 years since my post-surgery PETscan.

    Hope your DEXA goes well. Mine came back with significant change between 2020 and 2022 probably due to letrozole so now I'm taking Evenity shots for a year.

  • francesca30
    francesca30 Member Posts: 63

    Hi! I know what you mean. From where I’m from, you can get scanned , as long as you can afford it. I’m entering my 4th year next month and I’m scheduled for my yearly petscan. Honestly, I wish I can just skip it. No matter how hard I try to keep sane, I’m always worried and anxious leading up to scan day. But my husband thinks it’s better to know ahead ifthere’s something we need to address early on than to find out later .

  • kotchaj
    kotchaj Member Posts: 209

    Thank you all! I made it through my scans, I'm still NED, but had a fullness show up in my cervix which I will have addressed this coming Friday. The day of my scans, I tried the fruit punch flavor instead of lemon, and it actually tasted like fruit punch. My taste buds liked it, but my stomach didn't.

    My insurance also covered the costs, thank goodness! And I can now forget about it (ha, ha) until next year. Out of all of the things I forget anymore, why isn't that one of them??