Onc ordering more testing that I don't want

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NTS
NTS Member Posts: 20
edited March 2019 in HER2+ (Positive) Breast Cancer

I feel like my doctor isn't hearing me when it comes to post-treatment testing. I finished chemo last Oct, lumpectomy last Nov, 6 weeks radiation in January. I'm scheduled for a mammogram and bone density scan, and my doctor wants to repeat a CT scan and bone scan in August (I had my first and only CT and bone scans one year ago).

I understand there's a protocol, but I despise all this added radiation from the tests. I have educated myself to the point now that I don't want the scans. I read something about a liquid biopsy might be an option rather than CT/bone scan. But I'm stuck on the fence because I also kind of want the scans just to know if anything spread. When I asked my doctor if I could get an MRI instead (no radiation), she said it didn't exist for the body. I'm also not sure why I have to get the mammogram if I'm getting the CT scan next month anyway? I just feel so frustrated and like I'm not being heard. I'm only 32 and I just hate subjecting my body to all this added radation. I don't know what to do.

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  • moth
    moth Member Posts: 4,800
    edited July 2018

    fwiw, the ASCO survivorship guidelines say: "Recommendation 1.3: It is recommended that primary care clinicians should not offer routine laboratory tests or imaging, except mammography if indicated, for the detection of disease recurrence in the absence of symptoms (LOE = 2A)."

    https://onlinelibrary.wiley.com/doi/full/10.3322/c...

    Is your physician giving you good reasons for why you should accept the risk of radiation exposure for the benefit of the scan?

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  • NTS
    NTS Member Posts: 20
    edited July 2018

    No good reason for the repeated CT/bone scan - just "I like to repeat the scans at one year out."

    I'm assuming it's because the risk of recurrence is highest in the first two years after diagnosis. My CT scan came back clear last time, and my bone scan was clear except slight activity I think at the shoulder blades that it said was likely degenerative, and not cancer. During my last MRI in November I did have a portion of my ribs light up, but my doctor was adament it was the neulasta shot I'd had the week before.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2018

    NTS, did you have an Oncotype DX test before chemo? Also you are HER+, doesn’t that increase your risk? Breast cancer can be more aggressive in younger people. Then there is always a second opinion you could get.


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2018

    NTS,

    Ask your MO what her plans will be for the future. If she wants to keep scanning, you may want to seek out another MO. But, if this is just her plan for one year out, then I don't think the radiation issue is a biggie.

    You are right that the risk of recurrence for HER2+ BC is highest in the first years after diagnosis. I got a PET scan a year after diagnosis, and then mammograms every six months for two years. But, now I'm just doing mammograms once a year, and dexascans (for bone density) every two years. I'm actually glad to be doing the dexascans; my last one revealed that I had full-blown osteoporosis, and was at high risk of bone fracture. (I'm now on Prolia.)

    My first MO was a scanner; my second MO is not. You need to feel comfortable with your MO; if she's a scanning fiend and you don't want that, find another one who will listen to you.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2018

    marijen

    The oncotype test is only for those diagnosed with hormone positive, HER2- breast cancer. NTS would not have gotten that test.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2018

    Thanks Elaine, I didn’t know that. And I don’t know my risk as I got no tests like that. I do have a question I’ve been wanting to ask. Why are they so intent on mammograms after we’ve already been treated for Stage I to III? Is it more likely recurrence will be local? Again, I feel much better knowing it hasn’t progressed to the rest of my body..

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2018

    marijen,

    While the rates of survival are same for both those who have mastectomies and those who have lumpectomies + radiation, those who have lumpectomies do have a slightly higher risk of recurrence. So, they recommend mammograms for breast cancer patients who have undergone lumpectomies.

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  • NTS
    NTS Member Posts: 20
    edited July 2018

    Elaine is correct, no oncotype test for me.

    As far as I can tell, the full body CT and bone scan is just the one time. Then continuous monitoring based on signs/symptoms after that. I will also get the semi-annual mammogram for a couple of years and then annually after that. I still hate all that radiation. Has anyone talked to their doctor about thermography as an alternative? I asked about ultrasounds as an alternative but my onc said it might miss something, I'm guessing because there could be human error versus a big machine just taking a whole image of the breast.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2018

    Yes NTS, you are right about the ultrasounds, they work better when they know where to look. I looked into Thermagraphy and it’s really not accurate enough plus not covered by insurance. It will only show hot spots and you would still need further imaging. There is something i posted on radiation somewhere. Mammograms are near the least level and CT scans are near the most radiation, with Pet scans at the top.

    So of course lumpectomies are more likely to recur than mastectomies but there is a study that says metastasis actually happens early even rhough it may not turn up in imaging right away. Dormant cells or cells too small to see. I’ll see if I can find it. And also a study sayimg lymph node involvement does not necessarily go on to metastasize.

    I hope this conversation is helping, NTS.



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  • Egodfrey13
    Egodfrey13 Member Posts: 1
    edited March 2019

    Thermography should never be considered an alternative to mammography/ ultrasound/MRI because Thermography shows physiology and mammography shows structure. They actually complement each other to give you a more complete view if your breast health. Thermography is more than just showing hot spots. Today’s thermographic images can, among other things, show the actually vasculature. It’s true that insurance doesn’t cover thermography, yet. Many covered treatments, tests, and prescriptions started out not being covered. Personally, I think it’s a great tool to add to my breast health routine.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2019

    FDA WARNS RE: THERMOGRAPHY

    https://www.fda.gov/medicaldevices/safety/alertsandnotices/ucm631885.htm

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