Bone scan recurrence? Worried

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Shefla
Shefla Member Posts: 11
edited January 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello- I am new to this forum but not to BC. Dx 5 yrs ago with stage1 at age 42. Bilateral mastectomy, recon, later BRAC2 positive and so had prophylactic oophrectomy. Life was great! I run marathons, compete in triathlons and had basically no restrictions. I have had bone pain in my ribs for 8 weeks - horrible pain and thought it was due to either a break or reconstruction stitches.



My chest xray showed no break. I had a CT which showed "sclerotic 7th rib" and then was sent for a full body bone scan. I could see rib " hot spots" on the scan as I was in he machine and dogged the tech to let me look closer. There were obvious hot spots on two ribs, exactly where my pain is. I have been waiting for a call which didn't come (10 days now)... I have convinced myself that it is bone mets and the doc is sparing me the news thro Thanksgiving...any advice or similar stories???

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  • nancyh
    nancyh Member Posts: 2,644
    edited November 2011

    Dear Shefla,

    I'm sorry, you must be in agony waiting for those results.  Why on earth is it taking so long?  You have a right to call first thing Monday morning and get an answer.  Hopefully the hot spots will be nothing, but if they confirm your fears, please do join us on the stage 4 board where you'll get lots of support and information.  Sending all positive vibes your way and hoping you have answers very soon! 

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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    Nancyh- thank you for your response and kind words. I will call tomorrow first thing. I called my doc last Tuesday, two days before Thanksgiving, and the lack if response Tues or Wed concerned me. I might be reading way too much into this, but It seems most women get a CT AFTER a bone scan for a more detailed look. I was sent there first as they suspected soft tissue issues or something wrong with my implant.



    I have to say that the positive attitude of women on the Stage IV forum is uplifting, although I hope NOT to join your club!

    Shefla

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited November 2011

    Shefla -  I read your post and have nothing valuable to say, but that I'm here with you.  10 days is a ridiculous amount of time to wait.  I will be waiting with you and am praying for benign results.  Please let us know when you hear. 

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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    Bcisnofun-



    Thank you for the support. I will be sure to get back to you when I hear. Shefla

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  • reesie
    reesie Member Posts: 2,078
    edited November 2011

    Shefla,



    There are many things that can light up a scan. Sclerotic bones can indicate healing bones - my lytic lesions showed "sclerotic indicating healing" on my scans in May. Maybe you injured your ribs before because of rads and now they're healing.



    Hoping you get good results soon.

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited November 2011

    Hi Shefla - checking in.  Any news?  Not sure what time zone you are in and whether or not doc office even open yet.  thinking of you...

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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    OK- so the doctors office called me first thing. 

    As suspected, the radiologist report on the bone scan indicated "focal tracer activity in the sixth and seventh right ribs corresponding with the abnormal chest CT.  Findings may be post traumatic (I do not know of any trauma), however given the patient's history of breast carcinoma metastatic disease cannot be excluded."

    I went into the office and picked up both that report and that of the CT  which stated " focus of bony sclerosis...indeterminate origin and given patient's symptoms could represent a metastasis..".

     So, here I am still not quite knowing but as the the next appointment (Wed AM) is back at the oncologist, the strong suspicion of metastases is there.  I did not have chemo or rads the first time around due to no lymph node involvement, and bilateral Mx.....but of course now I am thinking why was it not offered????  I am BRAC2+ and the original tumor was Grade 3, (but caught by routine mammogram very early).

    Anyone know of the next steps to confirm or rule out bone metastases?  Blood work? Bone biopsy (which sounds terrifying and painful!)?  Are there other scans to be done in addition to X ray, CT and bone scan?.

    Have any of you ladies experienced these things?

     Thank you for checking in...I appreciate the cyber support.  I am in Florida by-the-way and luckily live close to the Mayo Clinic- that will be my second opinion for sure.  They have a world class BC team and lots of research and new therapies going on.  Shefla

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2011

    There is MRI imaging and PET scan.  These are pricier scans that may or may not have conclusive results.  A biopsy would take the guesswork out of it, but I agree that it does not sound like fun to have to have one.

    (I had rib pain in my back.  My bone scan was clear, and I think the pain was rads related.)

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited November 2011

    Hi Shefla - cyber support here but I don't know the answers to your questions.  It does seem like there is differing opinions on doing chemo for stage 1.  You'll be in my prayers.  Please let us know what you learn on Weds. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Oh my goodness, this is so ME right now, too.  Mine has been going for about 5 weeks now of not knowing what is really going on.  Here's the scoop:

    Had very tender ribs at my onc checkup on Oct 21, so the following Wednesday I had an xray because he thought they could be either broken or dislocated.  No history of trauma either.  Xray confirmed breaks in my 9th and 10th ribs...again no trauma.

    The first thing the onc did was to order a bone density test as I am 33, menopausal (due to hyst, ooph) and at high risk for osteoporosis.  BD was normal.  The radiology report suggested a PET scan because of my history, but in ins co. denied it. (Grrrr, don't even get me started.)

    So my onc did a CT instead, saying that if there was no sign of cancer anywhere on the CT that it was "highly unlikely" that it the breaks would be caused by mets.  CT was normal.

    Then he wanted to do a full body bone scan to round out the scanning process.  On the bone scan, my left ankle, my upper right femur, and my broken ribs lit up.  The left ankle is pretty much explained by an injury I had back in mid-August while marathon training, the ribs we knew were broken, but the femur is the biggie here.  My upper leg has hurt for MONTHS.  I thought I had been dealing with a pulled quad muscle, never really given much thought as to why it wasn't healing, just took time off from running here and there, but it never got better. 

    So my onc ordered an xray of my femur next.  After looking at the bone scan and my history, the report just said that they were "concerned about metastasis."  My dr thinks it's an over-read, but passed it on to a bone specialist to look at the xray who now says that "it's likely that it's not cancer, but needs an MRI to be certain."

    Whew.  So that's where we are now...my MRI of my right femur is tomorrow.  I'm ready for answers.  And what about my ribs?!  I have no history of any kind of trauma, no coughing spells, no roughhousing with the kids (or hubby, ha!), nothing.  So that still lingers in the back of my mind.  I am emotionally and mentally exhausted.  I'm praying for answers this week.  I hope you get yours, too <3

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  • Tiger_Blood
    Tiger_Blood Member Posts: 270
    edited November 2011

    Hi,

    I just recently had a bone biopsy and it really was no challenge. They give you sedation drugs with LOTS of pain relief. I felt no pain, I promise. The next step is most likely a PET or an MRI. If they both come out showing signs of mets they will most likely order a bone biopsy.

    Giving lots if support and cyber hugs!

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  • diana50
    diana50 Member Posts: 2,134
    edited November 2011

    sorry you are going through this.  it is really really hard when things are going on in your body and you have no definate answers.

    the only way to determine if something is cancer is to biopsy. scans can identify possible problems  but radiologists are unable to " confirm" if something is cancer by a scan.  it is up to your oncologist to follow=up on scans.  often times they wil "wait" for 3-6 months to see if there are ' changes" on the scans...like more growth...etc.  i have gotten to the point that now i don't have anxiety about any scan or blood work that is off; i save my anxiety for a biopsy that actually has cancer cells in it.  otherwise; it is too easy to stress about every little test when no one knows "for sure"  the tests are really a way to continue to look at something until you get to the biopsy...if necessary. 

    hang in there.

    diana

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited November 2011

    shefla and runnermom - so sorry you are going through this.  Please keep us posted...

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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    RunnerMom - thank you for sharing your story. I totally get the leg pain thing and just assuming it is an athletic injury and "running through" it.



    One of my biggest frustrations with the current rib pain is that I cant run at the moment - just walk! I am trying to be grateful for what I can do....particularly when there are so many women on these boards who are struggling with their disease or treatments. It's odd that my pain is actually worse at rest, but 800 mg ibuprofen is helping.





    Tiger Blood- thank you for the reassurance about the bone biopsy. I hope I won't have to have that.



    Diana50- I get you on saving the worry for the important times. Wait and see does not seem like a sensible strategy, so hope that is not the plan tomorrow when I se my onc.



    Thank you for your support. It is therapeutic for me to share here.....You ladies all get it! Shefla



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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    I just re-read my last post....I work in the corporate world and one of the things we say is "hope is not a strategy...". Meaning you plan the outcome you want to attain.



    Well, there is a lot o hoping going on here....I would like to control my own destiny, but BC does not allow that! Shefla

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  • Shefla
    Shefla Member Posts: 11
    edited November 2011

    I want to update the group on what happened today at the oncologist.  She discussed the CT and bone scan results and thoroughly investigated any history of trauma (none known).  The pain concerned her, as someone had mentioned earlier "unexplained pain' is suspicious. 

    Next move is an MRI next Monday and back to her Tuesday.  At that point, she feels she will know whether to send me for a bone biopsy or not, but also explained that the postition of the lesions is very awkward (implant in the way).  It would be radiographically guided bone biopsy, in the CT (?) machine.

    If the MRI is not indicating cancer, she wants a PET scan in 2-3 weeks  (maybe to look around a bit further, see if anything small missed on CT I think).

     I flat out asked her what she thinks of the whole presentation, she said 50/50 chance of it being mets....I think that is better than other odds I had self-established.

     I will update the group when I know more.  Thanks for listening. 

     RunnerMom- Did you have your MRI?  Any news?

    Shefla

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited December 2011

    thanks for the update Shefla.  I'm glad you got better odds than you thought you would get.  I'm also glad your Dr. is treating you so well.  Thinking of you.  Please keep us posted. 

    runnermom - thinking of you too.  Please let us know if you get more info. 

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited December 2011

    Sorry you have so much suspense heading into the holidays.  Has the pain gotten any better?

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  • Shefla
    Shefla Member Posts: 11
    edited December 2011

    Hello elimar,

    I thought about your question on pain and decided to not take a painkiller last night.  I can report that the pain has not got any better at all.  I have been managing it with 800mg Ibuprofen about 3X daily....pretty effective. 

    Thanks for asking though.  Shefla

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Hey!!  Yes, I have GOOD NEWS to report!!  I had my MRI of my femur on Wednesday, and about an hour later my hubs got a text from my dr that said "MRI NO CANCER :) stress injury from running"

     Ahhhhh, I felt like I can breathe for the first time in a month!  And the last two night's sleep have been amazing:-) 

    After going to my onc office and talking to him, he said the radiologist told him that it was basically like shin splints, but in the femur.  There was no stress fracture, no sign of cancer.  But I do have to take 4-6 weeks off from running, but honestly I don't even care.  I told him that I would gladly never run another step in my life if I never had to worry about cancer again.  No such luck there, but it's all good for now;-)  I am beyond relieved and so ready for my holidays off.  I have two months before my next onc appt and my breast MRI.

    I am praying -and believing- for good news for you, too!!

    http://ericaexercisesneats.blogspot.com 

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  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    Yay RunnerMom!!!
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  • Shefla
    Shefla Member Posts: 11
    edited December 2011

    Great news Runnermom!  So happy with that result for you.  Do rest it though...I know how hard it is to stop doing what you love so much, but a few weeks off running will likely be good for your whole body.  Shefla

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited December 2011

    so happy to hear it runnermom!

    Shefla - is your MRI this coming Monday?  Do you know how long it will take to get results? 

     thinking of you both and wishing you only b9 results.

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  • Shefla
    Shefla Member Posts: 11
    edited December 2011

    Hello bcisnofun ( just realized what your forum name stands for :))



    My MRI is Monday and onc appt Tuesday AM. I told her I could not stand another excruciating wait for results, so she said she would get the results from the radiologist ASAP.



    Thank you for asking- I will let you know what happens. I'm trying to stay super busy this weekend to try to distact myself. Shefla

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited December 2011

    Okay. Waiting with you. Positive thoughts and prayers headed your way

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  • Shefla
    Shefla Member Posts: 11
    edited December 2011

    I have had an interesting couple of days!  Overall, the outcome is good, with still some questions to be answered!

    Yesterday I had an MRI of the ribs which were painful and had shown abnormalities on CT and bone scan.  Today I went to the oncologist for the results and she gave me good news- they are 80% sure that it is "non-displaced rib fractures" with a benign origin. 

    Follow-ups include a PET scan in January, a re-image of MRI in 3 months, and the oncologist suggested a second opinion with a bone oncology specialist.  We are looking into where that could take place.  She wants to review my case with her tumor board, but thinks it will result in the same recommendations.

    What we discussed was the reason for the "spontaneous" rib fractures.  Because I have had surgical menopause, it could be osteoporosis.  I have had 2 bone density scans the past years and they indicated osteopenia (sp?) or, somwhere in between normal and osteoporosis.  We discussed medication for that and she actually recommended Tamoxifen as both a BC preventative drug and a bone builder (secondary benefit).  With my original BC dx in 2006, we decided against Tamoxifen as I had no ovaries and had a BMX..so there was not a lot of estrogen around...but still some!  I'm going to read around these boards to find out how people have done on Tamoxifen.

    Because I have a lot of reconstruction stitches in below my implants, stiched to the intercostal muscles, I am wondering whether there is strain put on my rib bones, and that may have caused the fractures...just a theory.

     So, all in all, I am very happy to report an alternative diagnosis to bone mets!  I will continue to follow-up on the other recommendations. This one really, really scared me.  I am so grateful.  Shefla 

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  • abw
    abw Member Posts: 6
    edited December 2011

    I am so happy for you! Yay! I've been following your posts ; your diagnosis is similar to mine. Diagnosed at age 40, BRCA 2, oophorectomy, avid runner. I am not even a year post mx so I am in that uneasy place of " what's next?"

    Angie

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  • lola12
    lola12 Member Posts: 127
    edited January 2015

    hi everyone,

    My situation is a little different. I know I injured myself in the rib area but pushing a stuck door in my basement really hard and feeling a painful pop in the rib area. I had pain for a few weeks.

    I have yearly breast MRI tests and my lower lateral rib had T2 sensitivity. Report says may be due to fracture but merastasis cannot be excluded. Recommended bone scan.

    What can bone scan see that mri cannot? I am soooooo worried. Am stage 1a and almost 5 years out.




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