Not looking good

jennyboog
jennyboog Member Posts: 1,322

I just got back from seeing my onc.  I explained to her about the burning jaw & neck thing I've been having for over a month now.  She seemed concerned and checked me out like she never has before and I'm scheduled for an MRI on Friday and then a results appt. next Wed.  She has never scheduled me another appt after a scan before, usually just says she'll call me.  The tingling/numbness of the left side of my tongue is a big concern for her also.  I was trying not to freak out while leaving the hospital but I did.  I am so scared of the outcome, all I can do is cry.  This is the first scan that I've had with concerning symptoms.  I can't even look at my daughters without bursting into tears.  God I hate this disease, it keeps taking and taking, enough is enough.  Sorry about my glass being half empty today but I just needed to vent.

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Comments

  • DCMom
    DCMom Member Posts: 624
    edited September 2011

    I am so sorry you are having to deal with all of this again.  Scans are always scary, but so often it ends up being something else.  I am praying for the something else.  Stay positive and let us know.

  • DCMom
    DCMom Member Posts: 624
    edited September 2011

    I am so sorry you are having to deal with all of this again.  Scans are always scary, but so often it ends up being something else.  I am praying for the something else.  Stay positive and let us know.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    So sorry for your anxiety.  I hope everything comes back okay.  Praying for you.  Let us know how you're doing. (((((((Jennifer))))))))

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2011

    jennyboog,

    I'm really sorry to hear about your anxiety. It must be so painful for you. I have a pelvic MRI scheduled for next week but I have NO symptoms - and yet I am not exactly nonchalant about it so I can't imagine what must be going on inside you. Vent all you need.

  • Pure
    Pure Member Posts: 1,796
    edited September 2011

    So sorry Jen:( Hang in there it could be something else...You just don't know!

    Prayers and Hugs!

  • krcll
    krcll Member Posts: 343
    edited September 2011

    I'm so sorry to hear of how worried your onc seems to be. We are so sensitive to and looking out for signs and  signals to tell us what the scan will say, but in the end, even your onc can't know now, Only the scan or a biopsy can show what's going on. It must be so hard for you to have to wait for an answer. But it seems to me that there has recently been a run of women on the boards it was looking extremely worrying for, but the scan results showed it to be completely other things! I'm crossing my fingers that it will be the same for you.

  • faithfulheart
    faithfulheart Member Posts: 544
    edited September 2011

    ((((((Jenny)))

     Remmeber you just had thoughs great results from the blood test!  That has got to be worth something. I know, none of that matter's right now because your scared, I am so sorry. You will be in my prayers, hard core!!!  I remmember when I had my bone scan on my hip, I was sure it was mets, it hurt sooo bad. The Dr. was concerned too, that always freaks you out. In the end it was just pain, I still have the pain, not as bad, but still there. My point of rambling is, not all of our pain will be bc related, you have a good Dr. there just making sure everything is fine!!!!

    Try to stay calm and carry on, your gonna be ok!!!!

    We will be in the waiting room with you!

    Hugs

    steph

  • Pure
    Pure Member Posts: 1,796
    edited September 2011

    That's right...That blood test was good! Were you having the symptoms at that time?

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

    jenny...hugs and prayers.  so scarey.

    what exactly are they going to scan?  your head/neck/jaw?

    i had a scan on my neck....three radiologists thought i had a tumor on my major neck artery.  it turned out to be cholestrol.  i had another scan...a different scan...at a different scan place...and it wasn't cancer.  cancer usually travels down and not up.

    listen, we are all praying and thinking good thoughts for you.  i really hope all is well. hang iin there until you find out for sure what is going on. 

    hugs

  • SharonMH
    SharonMH Member Posts: 353
    edited September 2011

    Hi  Jenny,  So sorry that you have to worry about this now. My thoughts and prayers are with you. Take care.  SharonH

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Thinking of you. Scans and waiting for results are so stressful, it is just awful. Hoping they find something benign.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    Thanks everyone, I love you all....My dr called after I posted this and said she researched Aromasin and that there is a rare 2% of the population that reported having burning, tingling, numbness (to their extremities mostly) mine is collarbone, side of neck and up to my jaw (BC side).  She also said, she felt no swollen LN and that my circulating tumor cell test being negative was a great sign, that it most likely would have showed something.  She said, a scan is needed though to rule out anything and that she is concerned that my tongue is going numb though.  I've been on Aromasin since April but she said SE's can manifest later (6 mth window).  I feel a lot better, I think she realized how worried I was and how I didn't get answers to all my questions. 

    @diana50...paperwork says MRI head & neck

    @pure...the symptoms started right around same week or week after the test

    Thanks again ladies...I knew ya'll would understand.

  • gillyone
    gillyone Member Posts: 1,727
    edited September 2011

    Glad you got some clarification from the doc and hopefully the scan will show everything is fine.

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    I am so happy your doctor called to ease your worries! She seems like a very caring doctor.

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited September 2011

    Jenny,

    Honestly, the very first thing I thought when I read your post was "that sounds like a side effect of something (not knowing what you are on)".  Your oncologist has been around for a while, I'm sure, but this sounds like a rare side effect she's never seen, and hopefully taking you off the Aromasin and putting you on something else will do the trick.  I hope that your mind is put at ease very soon.

    Hugs

    Bobbie

  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    Sounds like you have a good doc (and a caring one too).  I am so glad she put you at ease.  Take care.

  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2011

    I am sorry you are dealing with this scare. I am hopeful that your onc is right, in that it is a se from your meds. Saying a prayer for a clear scan on Friday.

    Lexi

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2011

    I'm sorry that you are having such a scare.  It is soo unfair!  But I would be hopeful, you DID just have that circulating tumor test (you are brave, I would be too afraid to ask for this but would feel terrific if it tested negative) and this COULD be a rare side effect.  I hope that the MRI puts your mind at ease..

  • Outfield
    Outfield Member Posts: 1,109
    edited September 2011

    Oh, Jenny, I wish none of us had to go through these things.  I know how absolutely scary  it is to have a new symptom and have to wait for a scan then wait for the results.  Your onc sounds great.

  • jdootoo
    jdootoo Member Posts: 253
    edited September 2011

    Jenny, hugs and prayers...

    One love, Jackie

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

    keep us posted. hang in* hugs

  • KerryMac
    KerryMac Member Posts: 3,529
    edited September 2011

    Jenny, hope this turns out to be nothing!! I know it must be really stressful and scary though. Hang in there, we're all behind you!! (((hugs)))

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited September 2011

    ((((HUGS)))) Jenny!!!!

    I haven't been online the last day or so and just saw this.  I agree, I HATE this freakin disease.  But at this point, let's all just hope and pray your onc is just being overly cautioius.  I went in for a followup appt one time and when I mentioned I had pain in my lower spine she immediately sent me for a scan.  Freaked me out but good, but all came back clear.  So I will be praying for you that you get an ALL CLEAR soon!!!

    Love,

    Sharon

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited September 2011

    So sorry you have to deal with all of this...  I can see how you would have been terrified after your doctor's initial reaction.  It's scary enough to have these symptoms, but when your onc looks concerned it pushes the stress to another level altogether!  I'm glad your doc called to share her research with you.  She sounds like a caring doctor.  It's good you are having the scan to make sure.  I'm sorry for all of the stress and worry this disease causes...

    Wishing you well as you go for your scan tomorrow...  Hugs...

  • DCMom
    DCMom Member Posts: 624
    edited September 2011

    It sounds like you are in wonderful hands.  Your onc must really care to have called with her research.  Hopefully her commments took you off the ledge. I'm sending good thoughts.

  • YATCOMW
    YATCOMW Member Posts: 664
    edited September 2011

    Sometimes it is just so hard to find peace with this disease.....every pain is questioned.

    but I think the odds are that you are fine....must be an SE as doctor stated.....for me...I swear...right after I take the scan the pain goes away.....until the next one....

    Waiting for the results is the worst......hugs coming your way and that all is just fine.

    Jacqueline

  • MaxineO
    MaxineO Member Posts: 555
    edited September 2011

    Jenny- I am sorry to hear about this scare.  I hope your onc is right, just side effects.  It's okay to break down once in a while...crying definitely heals.  We're here for you and praying for the best possible outcome!  When is your scan? Keep us posted.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2011

    jennyboog - just read your latest post. Things definitely look a bit brighter. Phew. Hope they stay that way.

  • nowords
    nowords Member Posts: 423
    edited September 2011

    I had some headache issues and tongue and face numbness and scalp burning pain about a year after diagnosis that lasted a few weeks and had a brain scan and other tests and nothing was found...no significant issues after they subsided...figured it was side effect of adjusting to Tamox and chemopause ....

    Hoping all clear for you....

    Constant fear alert sucks.

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited September 2011

    i am also concerned about you.  I agree with nowords, constant fear sucks.  I will keep my fingers crossed that findings are benign.

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