Possible Bone Metastasis and Bone Scan Accuracy

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thdancingferret
thdancingferret Member Posts: 1
edited March 2023 in Breast Cancer #1

Originally diagnosed with Stage IIA ILC with tubulolobular characteristics, had mastectomy and dose-dense chemotherapy with AC. 4 years later, rapid growing mass in uterus prompted total hysterectomy - pathology said it was 'pre-cancerous' and gynecology oncologist said chemo wasn't necessary since it was all taken out.

While hospitalized 2 weeks ago for stomach virus, blood tests showed I had high calcium and was anemic. Admitting doc and my primary both said I needed to see an oncologist ASAP because I've also been having severe hip pain waking me up at night whether I'm lying on that hip or not, night sweats, and occasional sudden weakness in my legs.

Oncologist is concerned about possible bone metastasis and ordered a bone scan, CT scans, mammogram and blood tests (including for tumor markers).

The radiology nurse for the bone scan (just yesterday) showed me my scan and said it didn't look like metastasis immediately so I was probably okay. However, to me, it looked like parts of my pelvis on each side were brighter than the rest, as we're my shoulder blades. She said it was probably just mild uptake for arthritis. I have arthritis, I know what arthritis pain feels like - this hip pain is NOT like arthritis pain. It's so painful I wake up ready to cry and afraid to move, and while it eases during the day, it doesn't go away.

My question is how accurate are bone scans? Are false negatives possible? I'm wondering if I should ask the oncologist for a PET scan or a bone biopsy. When I originally had the mammogram and sonogram that found the masses in my breast, they appeared benign to the radiologist ("we're 99.9% sure you could just leave them alone if you don't want a biopsy") and in actuality were not only malignant but invasive. So I'm a little headshy of radiologists and false negatives. I'm just really worried, feel "off" from my usual joint pains and aches, and want to know definitively if it is or isn't bone metastasis. Anyone ever experienced anything similar?

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  • New Flower
    New Flower Member Posts: 4,294
    #2
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    Hi and I am sorry

    Hi ,

      Welcome to the board. I usually do not sign in the morning, I could not sleep today i will be very quicck.

    Yes, you should ask for PET/CT. from my own experience, we stopped doing bone scans, because in my case it does not show all of  my tumors. Usually tumors are darker on bone scans as cancer absorb radioactive dye which the give you as IV injection 1-2 hours before the scan. Tumor areas look almost black on the scan. You should talk to radiologist not the nurse, however they a lot of experience still doctors are the ones who write and sigh reports. Please insist on PET/CT or CT with contrast. Everyone is different, you need to find what is working for you. If something does not feel right to you like your pain, you must get to the bottom of root cause for your conditions. Never give up until you feel confortable with outcome 

    Please keep us posted Regards

  • powermom
    powermom Member Posts: 22
    #3
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    I was so sad to read your

    I was so sad to read your post, it's so typical. These ppl being so cautious, i find it hard to believe if they would do the same to their sis or mother. There are no blood running there, that's for sure. Of course, they have to follow up with more tests. Always, a Pet-Ct. Insist on it. If you could let us know, how is life going for you. I must say, I was disapointed when my young daughter, w a history of BC, and was ok for 2yrs, then, when she had pain on her shoulder, a top notch onc, did not pick up on it. WE decided she should see a ortho, (it was the begining of e/t, bt i didn't know how it all works yet), and luckily he did not like what he saw on a plain x-ray, and right away sent her for a Pet. And since then, life has changed. So yes, you have to be your own defense lawyer, if you think something is wrong, then don't let it go. Best of luck for you.

  • Gm2873
    Gm2873 Member Posts: 65
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    Possible bone metatases and bone scan accuracy

    My oncologist ordered a PET scan after my initial meeting with her. It showed suspicious area on the left sacrum, so she the ordered an MRI for same area. It came back confirming a lesion on the left sacrum, so she then ordered a bone biopsy. It confirmed metatases.

    The way it was explained to me was PET scan is more accurate than bone scan and MRI is more accurate than the PET.

  • powermom
    powermom Member Posts: 22
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    Gm2873 said:

    Possible bone metatases and bone scan accuracy

    My oncologist ordered a PET scan after my initial meeting with her. It showed suspicious area on the left sacrum, so she the ordered an MRI for same area. It came back confirming a lesion on the left sacrum, so she then ordered a bone biopsy. It confirmed metatases.

    The way it was explained to me was PET scan is more accurate than bone scan and MRI is more accurate than the PET.

    follow up

    Hi Gm2873 - i was wondering about the MRI, my daughter is very young dx BC 2010, and bone mets since 2012, this month she had mets all over the bones practically incl skull (which terrifies me), but only Pet-CT was done, nothing about the MRI. What can you tell me about MRI's for bone mets, i was under the impression that Pet-CT would have picked up all mets...I just don't want to miss something... She is on Halaven and Xgeva shots, 2wks chemo 1wk off. So, i guessed we'd wait for 2nd round which starts monday, and then after I'd request she takes another Pet-CT...

  • Angelina1982
    Angelina1982 Member Posts: 1
    #6
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    Hi new need advice

     Hi to all, i  had mri done and it showed lesion possible metastasis and on my l1 think...my report in car.. but they suggest bone scan  and  done yesterday, only hours later prelimary report came to dr office primary dr.. showed nothing.. but how can mri shows it not bone scan? Read in here that bone scan can not be 100 accurate. So  i also read in here that pet scan or cat scan More accurate then bone scan..Im scared my grandma n mom great grandma all died  from cancer when detc late.. I want to keep up on this.. i have kids.. my primary will take it word.. i never seen test come back on hours Except cat scan..even my mri n mamogram it took few days my mamaogram not even back yet.. it been 2 werks.. just don’t know what to do..   appreciate any help .. my mom died @ 69 this jan.. my grandma @ 67 -21 yrs ago... great @ think in 70s..  i am 53 have 3 kids one special needs..  hope everyone happy pre new yrs.. god blessed all that going thru stuff.. tc....Angelina  ps ik this is old thread. Just ran across what was looking for..

  • Beepositive
    Beepositive Member Posts: 259 Member
    #7
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    Hello Angelina 1982

    I know test results are a lot faster now with today technology..but if you are not comfortable with the results based on your family history ...let the doctors know your concerns and keep talking to them to about it and asking questions..try not to beat yourself up so much I know its hard and everytime we have test there is always that what if factor in our mine...keep talking to doctors and if possible get 2nd opinions...

    Prayers and blessing to you and your family..

    Beepositive.....HAPPY NEW YEAR

  • sherrysnorwood
    sherrysnorwood Member Posts: 1 Member
    #8
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    I am trying to decide how far to push. I finished tx for IDC ER+ & HER-2+ in January. Around that time, I had some new back pain and my Oncologist sent me for an MRI. Results were "abnormal" but didn't appear to be cancer. Basically had some swelling that was unusual for someone who had not had a trauma. Follow up MRI 6 weeks later and the report came back as Metastatic disease. My Oncologist was so surprised that he had a different Radiologist look at it. That Radiologist said it was "very peculiar" but he wasn't convinced it was mets. So, I had a Nuclear Bone Scan that didn't show cancer so life went on for everyone...but me. They are saying the spots are "likely" atypical hemangiomas (4 total). There are way too many 'unusual', 'abnormal', 'very peculiar', and 'atypical' words being used for me to be comfortable. My Oncologist is satisfied that there is no cancer because I did so well with treatment and when I had a lumpectomy, the tumor was already gone. Luckily, I have a family member who is a Physician at a major US hospital who has agreed to receive the films and consult with a Spinal Radiologist on staff. I am unsure what to do. Hopefully, the Radiologist at JH will see something no one else did and I'll have an answer. I understand that after completing treatment is the time when many people worry over every possible sx but that has never been me. Now, I just want an answer! Would you push for more testing? What test would be more effective? Can a bone scan completely miss 4 different "mets"? Thanks for reading!

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