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  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    I just got home from yet another bone scan (2 within 2 weeks). My onco ordered an MRI of my left breast/chest area tomorrow. I do have a very "tender to touch" spot on the outside of my breast. Are places that are tender to touch something to be worried about? My bone scan shows my lower back at moderate risk for fracture. So I'm probably looking at a bone building med. I'm still not sure, with the pain in my right hip and a hot spot on the PET in my right hip, why they're not ordering another PET. It's so frustrating

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    Gal, you might try to speak directly with a bc radiologist about your imaging and what the best modality would be for you right now.

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    @ShetlandPony Thank you so much for your reply! I go today for the MRI of my left breast/chest wall. I'm going to try to contact the Onc Rad this morning to see if I can get a meeting with him. I pray you are well today. Thank you so much!

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2017

    TNMTNGAL, I'm not clear on why you had two bone scans within two weeks. Did they not scan your entire body (the way it's normally done) the first time? And I'm also not clear on why you think you need another PET scan. Not sure where you are getting your work up, but if it's not at a major cancer center, my best advice would be to take your records, including pathologies, scan results, etc., to the closest one on the list below for a second opinion. Perhaps the screen name you've chosen is overly influencing my thought process about some of what's going on with your situation (like I'm picturing maybe a community or regional hospital setting, which may not be the case at all) -- but when things aren't crystal clear or adding up, it's really important to seek an opinion from radiologists and oncologists who truly specialize in breast cancer, which you will find at the larger facilities listed here. https://www.cancer.gov/research/nci-role/cancer-ce...

    Please continue to keep us posted! Deanna


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    I agree with Deanna! Especially when things get complicated or questions arise, go to a major cancer center for their expertise.

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    Thank you for your reply! I do go to the "Regional Cancer Center" of Northeast Tennessee. They're are patients who travel from Virginia and North Carolina to have onco visits and treatments here. I have trust in my oncologist, I just think I'm getting lost between my regular dr and the cancer center somehow. I'm checking on it though. I will keep you updated as I find out answers. Again, thank you

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2017

    TNMTNGAL... I'm curious, have you seen the actual written reports from your scans, or are you sharing here what you recall being told? Also, when was the PET scan you mentioned? (I'm not understanding why you think you need another one if that one was fairly recent.) When they said your lower back is "at moderate risk for fracture," to what are they attributing that -- just degenerative disease? And how long have you had the tender breast spot? As a general rule of thumb, most new pains -- unless they're truly severe or otherwise affecting your quality of life -- can be given 3 weeks to see if they go away on their own, as the majority of odd aches and pains will. I am, quite frankly, more concerned about the hip pain you described initially, which I'm not sure has been diagnosed as yet -- or has it???


  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    I have the actual reports. I always get them printed for my personal file. My last PET was in 2016 that showed the hip hot spot but they said it was indicative of a torn psoas muscle. They sent me to my ortho who said it wasn't a torn psoas and sent me to my neuro surgeon who said it was from my lumbar degeneration. Still no for sure dx of my hip. The breast bone pain (soreness) has been going on a while. They did the MRI today which was excruciating on my back because I had to lay on my stomach for over an hour and a half for that. As for the bone scan, they only do my hips and lumbar. I wish they'd do an entire body nuclear medicine scan. I still don't have a dx for my hip, but praying I get one soon

  • jensgotthis
    jensgotthis Member Posts: 937
    edited December 2017

    TNMTNGAL, hopefully your oncologist is the only doctor ordering scans for you. Reading through the thread, it feels like the basic diagnostics aren’t being covered or followed up on by your team. A bone scan is done in nuclear medicine. Patient receives an injection of a radioactive tracer, waits three hours, and then Ian scanned from head to ankle. If you haven’t had this test yet as described, it’s absolutely what is needed in order to dx bone mets. For diagnostic purposes and to establish a baseline, you might also speak with your MO about CT scans of your lungs, abdomen and pelvis. For this test you have to drink that yucky barium liquid over the course of an hour and then can get all three areas scanned.

    It’s ok to ask your doctor for a full summary of where he or she is in the diagnostic process and what next steps might be up for discussion. I find I have to stay on top of all of this to keep everything moving along.
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    Gal, when you said you had a bone scan on your hips and lumbar, I wonder if perhaps you meant a DEXA scan, which is used to check bone density; i.e. to look for osteopenia or osteoporosis. The bone scan Jen describes above is for detecting bone mets

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    Yes, they've only done DEXA scans so far. I have an appointment with my GP today and im going to ask her to order a nuclear bone scan. This will only be the second time I've seen her because I recently changed drs because my old one didn't seem to be interested in finding out what's going on. My new general practitioner is a lady, who's had a similar situation as mine and actually understands my concerns and is willing to order tests needed to get a specific dx. She just has to do tests in the correct order because of my insurance, but she is very concerned. I will update you on what I find out at my appointment today. My oncologist was the one who ordered the MRI on my breast yesterday but I asked for results to be sent to my new GP today so she can go ahead and give me results because my next appointment with my onco isn't until March. Thank you ladies so very much for your concern, replies, and advice. I truly appreciate it! I'll talk with you later today to let you know what I find out. Prayers much appreciated for what I'm facing

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2017

    Ahhhh! That explains some of the confusion! Good catch, Jen (the dexa vs. nuclear bone scan)! And thanks for clarifying further, TNMTNGAL. Your situation makes a lot more sense now. I'll be keeping fingers crossed that you get some answers and that none of them involve mets.

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited December 2017

    @dlb823 Thank you! I just got home from my checkup with my new GP. I absolutely love her! She asked my concerns, which I told her, and she never questioned anything. She asked me what I wanted her to do. I told her I'd be more at ease if I had either a nuclear bone scan or a PET. She's ordering one. I'm not sure which yet. The lady at scheduling already called me on my way home to ask if I was still going to have the same insurance after January 1st so she can get the request going. I'll keep you updated as I find out more information. Thank you so much for your replies and concern! I pray each of you are well

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    Hi friends! I need some answers please. I have a nuclear total body bone scan tomorrow. I get the injection in the morning at 8:00 and I go back at 11:00 for the scan. My question...what is the prep for this? Eat, drink, take meds as usual or what? The receptionist told me not to have anything after midnight including gum or brushing my teeth. But I looked up the prep for the procedure and it says do everything normal that I'd do any other morning so I'm very confused. Thank you in advance!!

  • Crystal15
    Crystal15 Member Posts: 8
    edited January 2018

    Happy new year!

    I wonder what kind of chance it is that lesions in bone scan and MRI turn out not to be a met after other test (such as bone biopsy). Or anyone whose PET scan is negative but later turns out to have met after biopsy.

    I had these three tests done due to hip pain. Bone scan shows abnormal uptake, MRI shows a lesion, but PET is completely negative. Not sure if PET is falsely negative or the MRI lesion is really not a met

    Thank you.

  • Crystal15
    Crystal15 Member Posts: 8
    edited January 2018

    TNMTNGAL,I don remember having to fast for bone scan, I actually went to get lunch after injection before going back for the scan. For med, I think there are some requirements, I don't remember exactly, seems that you should not take supplements like Vitamin, calcium etc. the night before or the morning of.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2018

    TNM - I'm assuming this is a nuclear bone scan? I was told nothing after midnight. Easier to be safe than sorry.

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    TNMTNGAL, I don't believe there's any fasting required for a nuclear bone scan. I've actually been advised to go and get lunch between the injection and the bone scan.

    If you are possibly having a CT or an MRI in between the nuclear injection and bone scan -- something I've often done -- they usually want your stomach empty for those scans. But then you can eat in that time frame after a CT and before the bone scan.

    Crystal, what a frustrating situation! I would probably ask to have all 3 scans reread elsewhere for a second opinion on what's going on. Have they done blood work -- tumor markers, liver functions -- to see if any of those are elevated?


  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2018

    Prep for my quarterly bone scans and Pelvic/chest CTs is always the same - no restrictions for the bone scan but I must fast for several hours before the CT. I have the nuclear injection at 7 am, start drinking the lovely barium contrast at 7:30 (don't let them fool you - the mocha tastes nothing like coffee 😊), CT at 8:30, then bone scan at 10. It's a great way to stack the appointments.

    The first couple of times I grabbed coffee and breakfast in between the two procedures, only to learn my bowelsaren't particularly fond of the barium. Now I just sip a cup of coffee until the scan, then eat later when I'm home again.

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    So...I just got out of the nuclear bone scan. I snuck a peek at the one of my hip/lumbar area. Is it normal for the top of your iliac crest and spine to be whiter than the rest of the bones on the scan? I appreciate any and all answers

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Glad the bone scan is done, TNMTNGAL! From my experience, it's impossible to judge from a quick peek or from a technician's attitude, which is another common thing -- the tech suddenly goes from chatty to all business-like, so we fear they've seen something ominous. I've seen a lot of white and been absolutely certain it was bad news -- made myself literally sick worrying about it -- only to find out everything was stable or improved. The area you're asking about is very bony, so I think would look quite densely white. However, it really is impossible to tell anything from quick peeks or descriptions of quick peeks.

    Fingers crossed and totally hoping for only good news!

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    @dlb23 Thank you. This is the hardest part!...the wait

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited January 2018

    Anyone here ever have high liver enzymes from tamoxifen. I asked in that thread also, just worry about liver mets since it has steadily risen to twice normal over the past year and if gets any higher, MO will order ultrasound of live

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    @dlb823 just got my nuclear bone scan results. The dr said it's normal...BUT it says they recommend dedicated plain films of my spine and right hip for further evaluation. So my question is....what does that mean? Am I crazy

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    TNMTNGAL, I'm not a radiologist, and you're definitely not crazy, although I can see how this going in circles with scans could make you crazy!

    If I were you, I'd take a deep breath and just be very, very thankful the bone scan did not show mets. Give things a few days to settle down, and see what your caring primary doc suggests doing next. Clearly, everyone seems to agree something is amiss in your hip/back. The challenge will be finding an expert radiologist and/or ortho doc to put all the scan information together to sort out what's really going on. But for now, I am very thankful -- and I know you are -- to hear the word "normal."

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    @dlb823 thank you so much for your response and support! Yes, now you see why I have such anxiety over the pain in my hip and back. My old dr sent me for MRI of my hip and back and the report said moderate degenerative changes in my back. The hip one said it was indicative of a torn psoas muscle so he referred me to my ortho. My ortho told me I didn't have a torn psoas muscle and he referred me to my neuro surgeon who did the discs in my neck and fusion a few years ago. He said it's not my back. Neuro surgeon wanted me to go to my ortho for further evaluation. So I just got run around in circles. No one can tell me exactly what is going on with either my back or hip. So I just don't know what to do. I'm so frustrated.

  • CENOK2017
    CENOK2017 Member Posts: 80
    edited January 2018

    Dear All,

    How do you determine cm size to list on profile? My BS, after MRI Gave me 3 numbers and they are huge compared to anyone's anywhere in this sight I can find. I am a wreck and didn't think to ask him today why he gave me 3 numbers. He said size of baseball. Please, if any of you can private message me, i would appreciate it.

    Waiting for today's biopsy to see if invasive, which he highlysuspects after talking to RO. Mastectomy (how do u abbreviate? ) for sure after chemo,

    Terrified.

  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited January 2018

    Hi CENOK2017 - Mine was over 6 cm. Aggressive, huge and Grade 3. I'm not that far out from diagnosis, but am doing well.

    There are women on here - who had larger...they don't post very often - because they are doing well. :-)

    The beginning of this - is the most frightening part!!!

    ((((Hugs)))

  • Crystal15
    Crystal15 Member Posts: 8
    edited January 2018

    @dlb823, thank you so much for your suggestions. I sentthe three scans this morning for a second opinion. For blood test, my Onc does not really believe in tumor marker, plus I was DCIS microinvasion, he never tested my tumor marker. I will see what the second opinion is and decide the next step. I heard that PET sometimes can be false negative, so may need to prepare for bone biopsy.

  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    @dlb823They're putting me on Arimidex/Anestrazole?? Side effects you may have had on this please? I'm debating actually taking it. Thank you in advance

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