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Numb Chin Syndrome

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Jan50
Jan50 Member Posts: 4

For months now, I have noticed partial numbing in my chin and lower lip. My doctor jumped all over this at first and ordered a head CT and jaw x-rays, but nothing unusual showed up. Yesterday I did a random internet search and came up with an actual syndrome...numb chin syndrome. And one of the more common causes is metastatic breast cancer. Who knew!

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Comments

  • EWB
    EWB Member Posts: 592
    edited May 2009
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    What causes this?

  • Jan50
    Jan50 Member Posts: 4
    edited May 2009
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    From scanning some of the articles, it looks like one of the causes is a tumor in the base of the skull or the jaw itself pressing on the nerve that is attached to the chin and lower lip. This would make sense with me since some of my bone mets are in the skull.

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2009
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    Why didn't your Onc know that? You think he would have put it all together like you did. I know they have many patients, but it gets me crazy. Glad you found the culprit.

  • thisgirl80
    thisgirl80 Member Posts: 1
    edited May 2009
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    This was one of my mom's symptoms when they found her brain mets.  They found she had leptomeningeal spread.  She has a spot in her dura mater, the lining between your brain tissue and your skull.

  • Heidi_Ho
    Heidi_Ho Member Posts: 3
    edited May 2009
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    I have this too.  On one side of my chin and lip (right side).  I asked my ONC and he too jumped all over it and called the radiologist who said it was C-?/skull and a tumor was pushing on the nerve causing the numbness.  I asked it I could use it as a tumor marker and he said yes.  So far 6 weekly chemos later there has been no change.  We now have a numb chin club.  Lets report back in with any changes:)

    Best, Heidi 

  • Fitztwins
    Fitztwins Member Posts: 144
    edited May 2009
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    WTF???

  • pattih
    pattih Member Posts: 31
    edited May 2009
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    Man, it is always something.

  • EGAL
    EGAL Member Posts: 19
    edited May 2009
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    Oh my goodness, I thought it was just me.  I have numbness on the left side of upper and lower lips, (sometimes I droolYell) which is the same side as the brain tumor.  I never put two and two together or mentioned it to my Onc.  Geesh...this sucks!

    Ellen

  • EnergizerBunny
    EnergizerBunny Member Posts: 4
    edited May 2009
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    It's funny how so many of the doctors are surprised at this syndrome as I have spoken to many who experienced it.  I have had it from the beginning and 2 1/2 years later still do.  I also have a (believed benign) tumor in the brain lining and had radiation to the base of the skull.  The radiation was actually done to prevent other problems, but they believed it would take care of the numbness - but, no.  Let us know what happens!

  • Jan50
    Jan50 Member Posts: 4
    edited May 2009
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    I like Heidi's idea...a special club for a subset of women with Stage IV bc with bone or brain mets and numb chins! The chin could also be a good marker IF the numbness decreases as the tumor shrinks. But does it? What if the nerve is damaged and the area stays numb? Has anyone ever recovered from this?

  • Stormy1
    Stormy1 Member Posts: 295
    edited May 2009
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    Back a few(4-5) yearss ago I had the necrotic jaw syndrome from the Zometa. My Onc and I decided to stop with the Zometa. After lots of other drugs the bone mets had rematerialised to such a degree that when we decided on the Doxil tx lastNovember we agreed to try Aredia, which is another biphosphate. There were no problems with the tx's until I broke my leg. Then we had to stop chemo so that the leg would heal. Two and a half months later the oncologist and orthopedic doctors are trying to decide if its time to restart chemo and my leg still hasn't healed so as I may walk on it. At the same time I have consistent pain in the lower right and right centrl jaw. Not root canal material but definetly a numb chin. As to anyone recovering from it,I think that the feelings of numbnes would disapate over time                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 

  • stateofgrace33
    stateofgrace33 Member Posts: 2
    edited May 2009
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    Can you give me the website you found on numb chin syndrome, although I complained to my doctor about it, she doesn't seem to connect it to breast cancer.  I went to some sites but they weren't great...

    thanks

    Christine

  • Jan50
    Jan50 Member Posts: 4
    edited May 2009
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    Christine...There was not a specific site related to bc. Most of the articles I looked at were about studies of less common causes but noting that metastatic breast cancer was one of the more common conditions associated with the syndrome. I was surprised there even was a syndrome, since I thought it was a totally unrelated problem.

    Some of the articles talked about the significance of the diagnosis in cases where it was the first symptom presented. In my case, however, I already know I have bone mets, and some of them are in my skull, so I'm glad it's probably that and not some new, unrelated dental tragedy waiting to happen.

  • kazbee
    kazbee Member Posts: 1
    edited July 2009
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    Hi Christine

    I've only just joined the forum as I too have a numb chin.  I am already dealing with mets in my spine and was horrified when I googled numb chin and got this site.  Fortunately I already have a CT scan booked on my head but my world fell away.  Copy and paste the link below into your web browser

     http://turner-white.com/pdf/hp_jan00_chin.pdf

  • Heidi_Ho
    Heidi_Ho Member Posts: 3
    edited July 2009
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    Happy to report in that my numb chin is gone.  I've had 14 weekly treatments and I think my numb chin started to go around #9.  I was using it as a tumor marker and so this has made me happy.  Best to all, Heidi 

  • AliceJean
    AliceJean Member Posts: 8
    edited July 2009
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    YaaaaY!!!

  • KLee
    KLee Member Posts: 4
    edited August 2009
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    Just make sure this is not Osteonecrosis of the Jaw, due to Bisphosphonate tx., and possible tooth extraction.

  • MissyBraddy
    MissyBraddy Member Posts: 3
    edited August 2009
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    i have a numb chin and lip....and my jaw is locked up. cant hardly eat, talking funny. this is scaring me. dr said if it doesnt go away we will do xrays. anybody have the locked jaw symptom with the numbness??? help!!

  • JoAnneinNJ
    JoAnneinNJ Member Posts: 2
    edited October 2009
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    I have just recently been dx with Stage IV breast cancer. I hadn't been feeling well for months. Then in June my chin went numb. When I looked on the computer I saw it could be breast ca with mets. I was shocked. Ran to my doctors and everyone laughed at me. No one heard of it. Went to dentist for panarox xray & it was normal. Went to gyn and all was normal. Had physical and body xray and all was normal. Last mammo in 12/08 was normal. Went to neurolgist and he ordered bone scan. DX was mets to all bones including jaw. Still have numb chin after 5 chemos.......it's been a nightmare since.....Hardly any doctor I've spoken with heard of numb chin including 2 oncologist. If it wasn't for looking up numb chin on computer I still would have been undiagnosis...........

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited October 2009
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    Dear JoAnne,

    I read your post last night and thought I'd check back today. I've been thinking of you, as it must be difficult to read of a potential cause on the Internet, and then have it come true. I am aware that numb chin syndrome does occur in solid cancers amongst other reasons and for women, breast cancer is the most common source (of cancers). Like others have said, osteonecrosis of the jaw can cause this too if it involves the area of the jaw that the small nerve is found in.

    You are new to bc.org and I hope you'll look around and post again. Sometimes a post will get buried for a bit. Please don't let that put you off. There are so many wonderful women and men who help us through this breast cancer journey.

    My best to you,

    Tender

  • JoAnneinNJ
    JoAnneinNJ Member Posts: 2
    edited November 2010
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    Hi Everyone,

    Guess what??? It's over one year later and I'm still here and still fighting Stage IV breast cancer with mets to almost all the bones and still working every day and still have Numb Chin 24/7. My oncologist said if my chin didn't go numb I would have been walking around for another year with back and rib pains and no one would have figured out what was wrong with me. It may have then been too late for treatment. Mammos and ultrasounds still don't show breast cancer. Go figure.So maybe I was lucky to get a Numb Chin.

    But I'm feeling fine and completed one year of weekly chemo....hair and eyebrows are now grown back and enjoying everyday........

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010
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    Welcome JoAnne from NJ - whereabouts in Jersey are you?  I live outside of Philly for 26 years or so.  Finally came home to Minnesota. 

    Sorry you have had to join but it seems like the numb chin just may have extended you life a long, long time.  I have bone mets too but all in my spine for the moment and the treatment is trying to keep it that was.  No chemo yet - anti-hormonals and Aredia - this is a recurrence for me after 10 1/2 years NED. 

    These boards are great and are a place for you to come and vent, whine, get info and especially support and encouragement - for a place one would rather not be, it is a very special place!

    Hugs...LowRider

  • AuELX
    AuELX Member Posts: 3
    edited August 2013
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    I've been experiencing a numb chin and numb lower lip -- unilateral, mostly on the right side. It started a few weeks ago as minor lower jaw pain, mostly on the right side. Since I've been on Zometa for five years now, I immediately feared ONJ and scheduled a dental exam. Dentist took x-rays that appeared normal. No signs of osteonecrosis. She thought that my bruxism might be the cause for my lower jaw pain. Now the pain has morphed into chin numbness and lower lip numbness. Called my oncologist and she ordered a head CT along with my scheduled bone scan tomorrow. Not sure which is worse: a new bone met to my skull -or- my first soft tissue met to my brain. (I've only had bone mets before; all have been treated with radiation, no chemo)  Any one else experience this? Any calming or reassuring thoughts from my Stage IV comrades? I welcome any and all advice. Thank you! Thank you!  --AuELX

  • elsaequi
    elsaequi Member Posts: 1
    edited November 2010
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    I'm so glad I found all of you.  I was diagnosed with metastatic BC in 2004,  In all my bones.  Have been on Femera and then Tamoxifen.  On Zometa for almost 7 years.  Just finished radiation on my scalp for a small spot of breast cancer that popped up this summer.  I now have had the numb chin and lower left of my lip for about 4 weeks.  My onc had me do a brain CT -  nothing remarkable.  I am so scared that the scull radiation did something to me or that the cancer was deeper than my scalp. At least now I know I'm not alone.  Some of the material I have read on the internet has really scared me. Thanks for letting me unload

  • katie11
    katie11 Member Posts: 7
    edited December 2010
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    I mentioned to my onc today that my lips have been feeling every so slightly numb.  I notice it most when I am eating as I can't quite control the food as well as I usually can.  She immediately ordered a skull MRI as this appears to be mostly associated with mets to the skull that have trapped a nerve.  If that is what it turns out to be, we will probably do some radiotherapy to zap it.

    Good luck to all of us who are dealing with this!

  • dragonfly
    dragonfly Member Posts: 6
    edited December 2010
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    Hi,

    I also had lip and chin numbness on one side.  Had rads done which alleviated it somewhat, but ended up with aweful mouth sores.  Went away for awhile, then came back.  Found out I had a hot spot on my jaw bone pressing against nerves.  Had accupunture also, after a couple of weeks of finishing accupunture it went away!!!

    Debra

  • autumn78
    autumn78 Member Posts: 2
    edited March 2014
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    Its been quite a while since anyone has posted here. Wondering how those with NCS are doing? I am here because I started having weird symptoms about 3 months ago and I have yet to be diagnosed. Every DR I went to brushed my numb chin off because they had never heard of it. I of course was in panic when I read about it. I prayed to find hope in any article about it but there arent many articles and all are horrible and have the same outcome. That is until I ran across this forum. You have no idea how much this forum has helped me. I am currently seeing a neurologist that happens to be an oncologist as well. He immediately knew what NCS was when I brought it up. I am waiting to have a lumbar puncture done. Meanwhile trying to remain optimistic, but I wont lie.....I cry so much and feel so lost. I haven't been diagnosed with cancer as of yet and pray I wont be but not knowing is so scary. I have an 18 yr old, 16 yr old, 2 yr old and 4 month old. My fear isnt for myself, its for my children. I pray some of you see this and respond. I have a few questions  and would love to talk to someone. I hope this finds all of you well and beating that horrible thing we call breast cancer!

  • sandilee
    sandilee Member Posts: 436
    edited March 2014
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    autumn- don't panic yet.  There are other reasons besides BC that your chin could be numb.  When women who already have breast cancer mets present with a numb or tingling chin, it's more likely that the cause is skull mets.  But you don't even have a cancer diagnosis, so it seems less likely that BC mets are the reason for your numbness.  There are other reasons a nerve could be affected, causing the numbness, besides cancer. Even if it is a tumor, it could be benign. 

      Try not to let your mind get ahead of your diagnosis.  It sounds like you have found a knowledgable doctor and will be taken care of.   How soon is your procedure?  I hope you can find out soon what's going on.

      Best wishes!

  • autumn78
    autumn78 Member Posts: 2
    edited March 2014
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    Thank you so much for responding. I'm waiting to hear back from the Drs office and will hopefully have the procedure done next week. I have other symptoms that are new to me and I just cant understand all of this. Metallic taste in mouth, disoriented from time to time and others. I really appreciate your kind words. I will definetly update once I get test results.

  • CathieB
    CathieB Member Posts: 1
    edited September 2014
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    I have just joined this forum and the discussion because I was recently diagnosed with numb chin syndrome. I was first diagnosed with BC in 2001 on the left side, an infiltrating ductile carcinoma and had a lumpectomy but finally ended up with mastectomy in 2003 when alternative treatments failed to keep it away and tumor had come back. In 2009 was diagnosed with a stage 3C lobular carcinoma and 14/17 nodes....undetected for 6 years by regular mammograms... so now in 2014 I'm stage 4 with bone mets to spine, right femur and now skull, which is causing my numb chin syndrome. I did chemo/radiation in 2009 followed by Tamoxifen/Letrozole and then was diagnosed with bone met to T6/7. Underwent radiation because bone destruction was pretty significant even though I'd not had that much pain there. (eventually did) That was successful in stopping the cancer there, but the T6 collapse anyway, thankfully in a good direction, so I'm fine there. Oncologist wanted me on Xeloda, oral chemo for bone mets,  which I did for a couple courses, but I am not in favor of chemo for Stage IV since it's not really a "cure."  Johns Hopkins doc I was referred thought I should go back on Tamoxifen...go figure...but since I didn't want the chemo anyway, I did this about 3 months ago. Now I have this significant tumor in my head along with more in spine. Getting radiation currently to sacrum to reduce cancer there and associated sciatic pain, and radiation to head to shrink that tumor and get relief from numb chin and associated intense pain in right side of face at night when I lie down. Numb Chin just started about 2 weeks ago, but I was quickly diagnosed with the tumor in my sphenoid bone. What scares me is that median survival rate (in all the articles I read) is 5 months with these skull metastases. I am feeling fine other than the pressure and pain in right side of face and numbness of course, and the sciatica, which is already getting better from radiation. So I'm wondering why there would be such a quick demise from this. I am exploring alternative solutions since articles said that traditional treatment had little affect on survival rate. Hoping to stick around a while. I have 6 kids, mostly grown but one still at home in high school. Does anyone have a good outcome to relate? I'm tired of reading doom and gloom.