Scared and don't understand! Help!

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Mdempsey
Mdempsey Member Posts: 12
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello everyone, As you can see I'm a breast cancer survivor (almost 5 years, WooHoo) at age 35.  I haven't had any issues until about 2 months ago.  My oncologist always says if you ever have a pain that will not go away see a doctor and that's what I did.  About 2 months ago I started having a constant pain in my forearm.  Definitely felt like bone pain.  It started our tolerable and increased slowly until now it kills me.  I started taking over the counter meds with no relief.  I called my primary and made an appointment.  She immediately sent me for a x ray which didn't show anything.  Our next step was a CT scan with and without contrast.  The CT scan with contrast showed a lytic bone lesion on my radius about 6mm in size.  I couldn't believe what I was hearing and seriously believe my mind wondered to another world.  She gave me Percocet for the pain and contacted my oncologist immediately.  My onc wanted to see me the same day.  She told me if this is mets to the bone that treatment wouldn't be like before (no chemo) and she would take care of me.  Now I'm beyond scared.  She then ordered a complete bone scan the very next day and the bone scan was clear.  She told me I had RA in my wrist, elbow and shoulder.  Okay, but this still doesn't explain the lesion and the pain.  She sensed that I was still skeptical and she ordered a MRI of the arm.  I now have the MRI back and guess what, all clear!  I'm beyond confused - what was that on my arm in the CT scan.  Why is the pain in my arm still killing me.  I still feel like there is something going on.  My onc sent me back to my primary.  I spoke with her and she is ordering a PET scan (if the insurance will cover) just to check the rest of my body.  I apologize for rambling on, but I'm so scared!  I'm 40 years old with a 17 year old daughter and have so much I still want to do!  Finally to my question, LOL!  Should I ignore the CT scan results and go with the bone scan and MRI or what?  I'm praying the insurance will cover the PET scan.  I would appreciate any feed back on this!  Thanks to each of you :)

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2013

    Ultimately, I wouldn't recommend ignoring test results, but you are doing the right thing by getting additional testing, and perhaps getting a second opinion from another onc. and treatment team. What an emotional roller coaster, and so sorry that you are having such pain! 

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited August 2013

    After my mother's experience I would say let them do all the testing/follow-up they can and possibly even have another radiologist look at the original CT scan and MRI. My mother went through something similar where different scans showed different things or nothing at all and even 2 out of 3 biopsies that came back clear when there was indeed cancer in her bones. She was over a decade out from her original diagnosis. We would have loved to believe all the tests that came back clear for cancer, but are glad we didn't as now she is being treated and is having great results from treatment.

    I did tons of research on lytic lesions during the 3+ months that we were trying to get a definitive diagnosis and every medical journal, study, and report I read indicated that lytic lesions in women approximately 40 and over are almost always due to malignancy and even more so when there is a history of cancer. There's of course a chance that yours isn't cancer and if you only have one lesion then your chances of it not being mets is even better, but knowing for sure is important for your peace of mind.

    I hope you get the answers you need. It sucked when we went through it, but finding out for sure one way or another is a huge relief.

    Good luck! Sending hugs and positive vibes!

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  • Mdempsey
    Mdempsey Member Posts: 12
    edited September 2013

    Thank you so much for responding to me.  I value your opinions and situations.  I have now been scheduled for a PET scan and I'm hoping it all comes out ok.  I received my test reports today and the CT scan did say a 18 x 6mm lytic lesion that may represent a metastatic lesion.  I simply cannot understand one test showing something and the others not.  It's very frustrating.  I prayed and who knows God may have taken it away but my constant pain still exists.  So glad canadagirl that your mom is doing good and having great response to treatment.  I will pray for her and your family.

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited September 2013

    Mdempsey (Melissa), each diagnostic test is a different way of looking at the body and it is not rare for tests to have conflicting information. My lung lesions and pleural effusion didn't show up on an X-Ray. I've been having CT/PET scans for almost 2 years and the PET scans give the clearest picture of what my bone and lung tumors are doing (I have lytic lesions). PET scans are not perfect, but from what I've read others on these boards say, they are more reliable than bone scans. I know you are scared but here are some positive things to think about. 1) You are alive today, and you can hug your daughter and tell her you love her. 2) You don't have to wait for a diagnosis to get relief from your pain. If Percocet isn't helping, speak up. 3) There are several treatments for bone cancer, and more being developed. Please consider consulting with other oncologists who may know of new treatments. You deserve the absolute best care you can get.

    I hope the answers from your PET scan give you peace and fill you with hope. Please let us know what you find out.

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  • bluepearl
    bluepearl Member Posts: 961
    edited September 2013

    The arm is a peculiar place for a mets. There are many benign lytic lesions as well. By its appearance (ex: moth-eaten) they can tell the chances of it being bone cancer. Usually a bone scan is very sensitive but non-specific.....it should have showed up something.....go for the pet scan to get to the bottom of this........hoping for very good results for you!!!!

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  • Mdempsey
    Mdempsey Member Posts: 12
    edited September 2013

    I have a question.  I was reviewing my bone scan and it also spoke of issues with my ribs.  The exact wording is "areas of poorly marginated increased activity in the left 5th, 6th and 7th ribs" and "multiple focal areas of abnormal activity on the top of the left 1st and 5th ribs".  Does anyone know how to interpret this wording.  Has anyone seen this on their bone scan???  I sincerely appreciate each of you taking time to talk to me.  Thank you!!!

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  • wallan
    wallan Member Posts: 1,275
    edited September 2013

    Hey 

    I just want to send you hugs. How upsetting to have to face this uncertainty.

    Wendy

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