Very worried about possible bone mets

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited December 2018

    From someone with a recent metastatic diagnosis, as you requested: yes, the unknown/waiting for results is harder than having a plan and being able to take action. Even in the worst case scenario, there is no reason to think that you're on your way out of this world anytime soon. My doctor gave me a time line of years, not months.

    We have so many good therapies now, it's actually like treating a chronic disease. Lots of us continue our lives with minimal discomfort. It does take a while to cope with the shock and start to adjust to the reality but it is possible. I endured more than one PT session in tears, more from mental distress than pain.

    With preteen girls, you are probably pretty young yourself - I wonder whether genetic counseling was ever suggested for you. The presence of a mutation could help determine future options, for instance PARP inhibitors are useful when a BRCA defect exists. Otherwise, the advice to create distractions is a good way to survive!

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited December 2018

    Esmeralda, 3 years ago I was happily dancing in Zumba class and made a wrong move somehow. Pain immediately shot down my legs and didn’t get better for 2 months. I took painkillers, went to acupuncture, etc. Nothing helped. An MRI showed a ruptured disk in my lower back that was pressing on my sciatica nerve. I had to have an emergency surgery to correct it and am now 95% pain free.

    The point of this story is: not every condition is cancer, but it doesn’t mean it’s less serious just because it’s not cancer. See a good orthopedic surgeon, take a good care of your back. The longer your nerve is inflamed, the worse are the chances for it to completely recover.

    As I am writing this, I recalled that I thought that was the worst year of my life. Little did I know what was waiting for me down the road...

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  • MeToo14
    MeToo14 Member Posts: 493
    edited December 2018

    Hi Esmeralda, I'm so sorry you are having to go through this. I too am dealing with the same thing. I hope you have an answer soon. I hope your pain goes away soon.

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  • bevin
    bevin Member Posts: 1,902
    edited December 2018

    esmeralda, I am so happy that you're having the tests. Praying all turns out well.

    Hugs

    Bevin

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  • Egads007
    Egads007 Member Posts: 1,603
    edited December 2018

    Esmerelda....Hoping your imaging went well. Any news yet? Thoughts are with you!


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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you so much for remembering, Egads007. I had to reschedule them to this Thursday night for the MRI, and early Friday morning for the bone scan - because my 4 year old came down with a fever and awful cold! So, I am struggling through the week in anxious waiting. Some days are ok, while others are awful and I’m holding back tears (my ability to be “ok” seems to be heavily influenced by whether the pain is present or acute or not.) Thank you so much for for your support.

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  • grainne
    grainne Member Posts: 245
    edited December 2018

    That is such bad luck! I hope your little one is ok now. What a desperately stressful time for you. Hang in there, girl......we are all behind you.

    Just post if you feel overwhelmed....someone will reply. X

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    grainne - thank you so much for the encouragement! My girl is doing much better and will go to school tomorrow. It’s been tough dealing with my worries and being on 24 hour childcare duty this whole week. Not a lot of self care happening unfortunately. But a bunch of girlfriends who know I am struggling are coming over tonight. Tomorrow and Friday are the scans. Thank you for caring! It helps so very much.

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  • grainne
    grainne Member Posts: 245
    edited December 2018

    Thinking of you today and tomorrow. X

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you, Grianne - just arriving at hospital now for the MRI. Bone scan tomorrow at 10am. Grateful for everyone here!

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  • Novagirl
    Novagirl Member Posts: 123
    edited December 2018

    Esmeralda,

    Ask for a CD of your bone scan. It’s easy to read on your own. The results are instant. I got results from the MRI and bone scan same day within hours. I have to wait 48 hours for my CT scan results.

    Waiting is hell. Wishing you good resukts

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you, Novagirl! I definitely would not have thought of that! I will do that. Waiting IS hell. (Though I might have to screw up some courage to actuallylook at the bone scan myself. Fighting a ridiculous amount of fear these days.) You have been on my mind - I hope you are doing ok and are on your way to having a great plan in place. Wishing us all peace, peace, peace.

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  • Novagirl
    Novagirl Member Posts: 123
    edited December 2018

    Yes, this is all pretty scary, I know how you feel. Thank you for thinking about me. I’m just taking it one day at a time. I haven’t received my CT scan results back yet. I have a CT bone guided biopsy next week to to if it’s still horomone positive. My MO gave me zolodex to shit downy ovaries and xgeva shot for my bones. He thinks my treatment will be AI meds and radiation. Hopefully, that will knock this out. Stay strong! Thinking of uou

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    All, I am so scared. I can’t stop crying. I was able to watch part of the bone scan as it was happening on a screen to my right, from about mid-spine down to toes, and I saw significant uptake (if that’s the right term) in my tailbone. Very, very bright white compared to everything else. I am feeling devastated. Is there any hope? Could there be any other explanation? I should have never have looked over at that scan... I am so, so scared. I don’t know how to get through this. How do you get through this???? And it’s christmas. And my sweet girls, who are only age 4 and 10... How do I get thorough this? Please help me....

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    Esmerelda, you do NOT know what that means! It could be an injury. Please don't jump the gun before talking with your doctor! (((HUGS)))

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  • MeToo14
    MeToo14 Member Posts: 493
    edited December 2018

    Esmeralda, I'm si sorry you are scared. Like pupmom said, you don't know. You saw from the side, it could just be totally normal. Your bladder us right there and that lights up and could be what you are seeing. Hugs

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  • Novagirl
    Novagirl Member Posts: 123
    edited December 2018

    Esmeralda, I know this is so scary. I wouldn’t worry, I looked over at the screen too but I don’t think the study is complete until the scan is over. Does that makes sense? Hang in thte

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you so much for responding, Pupmom and Metoo14. What's so hard is that that damn uptake spot corrresponds with my pain in my tailbone. And it just screamed at me: cancer! Cancer! Metoo14, you are right it could have been my bladder maybe???... I looked online at other bladder images on bone scan - large, centered in the pelvis - and so maybe that was what I saw. But my pain! My pain completely drives my fear and thinking. I HATE THIS.

    They told me the scan could last anywhere from 30 min to over an hour. Well, mine lasted a little less than 30, and at the end, the technician came in the room and said we were done and she just needed to see if the doctors wanted any further pictures. She returned two minutes later to say they didn’t and we were good. And that was it. So... I realize I am living in CRAZYTOWN right now, but maybe the fact that the scan was shorter than it could have been and they didn’t need any further pictures is a good sign???? I am trying to take some good cues from anything! (Oh my god, I am feeling so crazy. Thank you, sisters, for helping me through this.

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you, novagirl, you are such a comfort. Thank you! I went ahead and got a CD of both scans, per your advice - thank you for suggesting it! None of our computers at home have disc drives anymore, but st least I have the discs myself for if/when. Grateful to you.

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    Your pain could be from a lot of things besides cancer, and they would all show up on imaging. I had stuff show up on CTs and bone scans. All turned out to be nothing. Did they tell you when you'll get results?

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you, pupmom. They said 24-72 hours.... sigh.

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    It will be over before you know it!

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Just got bone scan results - negative for metastic disease!!!!! Trying to let this sink in. Still waiting on MRI results...

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    YAAAAY! (Dare I say I told you so, lol)

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  • MeToo14
    MeToo14 Member Posts: 493
    edited December 2018

    That is wonderful!!!!!

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    Great news!

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited December 2018

    Thank you, pupmom, Metoo and Kbeee!!! After thinking “cancer” for weeks, I have a lot of “undoing” to do in my mind and with my thoughts... holy cow.

    Metoo, you are in my mind and on my heart, we are with you. And Novagirl, thank you for reaching out and offering support. The women on this forum never cease to amaze and inspire me. I am so grateful!

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  • Novagirl
    Novagirl Member Posts: 123
    edited December 2018

    yay Esmeralda! I’m so happy! Your MRI results will most likely be good too

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited December 2018

    Congrats, Esmeralda! Now you have to see an orthopedic surgeon to get rid of your tailbone pain.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited December 2018

    WONDERFUL WONDERFUL NEWS, JEN!!!

    We've all been in your shoes and completely understand how you were/are feeling. Now BREATHE and enjoy your family, - and the holidays!!

    I hope you find a way to alleviate the pain, - and I bet that this relief will ease some of it!

    Hugs from NYC!!

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