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Numb Chin Syndrome

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  • raro
    raro Member Posts: 78
    edited September 2014
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    Cathie, I have skull mets that are pressing on the lining of my brain. I've had off and on numbness in my face in the past, but chemo took care of that pretty quickly. Anti-hormonals can take awhile to take effect, but (for me, at least, and according to my onc) chemo acts much more quickly. 

    I don't like chemo either, but it has certainly made a difference. I was on the hormonals for about 3 years and blew through them all. Then I have been on chemo for 2 and a half years. There are some "gentler" chemos that might work for you. Sure, it's not a cure, but it can at least keep the cancer at bay, and in some cases get you to stable or NED. 

    And as to the statistics, they're way out of date and apply to all breast cancers. You are an individual and the only way you can know if a treatment is working is to try it and see. That's the annoying part of this disease, that what works for one person doesn't work at all for another, even if they have the same type of breast cancer. 

  • Bellerags11
    Bellerags11 Member Posts: 1
    edited October 2015
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    ok my question is...well...I'm New to all this...I'm going in for my diagnostic bilat mammogram and US next week but I've been having tingling and numbness in my chin and up my jaw a bit for About 3 weeks. I noticed a lump last week that was a bit tender when I laid on it. So my doctor is sending me for testing. I didn't mention the numbness since I never thought it had anything to do with each other. But here's the question...is your numbness and tingling constant or off and on? Mine comes and goes. Just curious. I'm really scared. I'm only 34. But I'm no stranger to cancer. I've had 2 different cancers before. Which makes it more likely to for me to have it again. Anyway. Sorry for rambling I just don't really have anyone else. Thanks.

  • moderators
    moderators Posts: 7,911
    edited October 2015
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    Hi Bellerags, and welcome to Breastcancer.org! We're sorry that this worry brought you here, but you certainly found the perfect community to be with and we're happy you decided to join us!

    We wanted to let you know that the thread you posted in has been inactive since September 2014. Also this forum is for Stage IV members only, so we would suggest starting your own new thread under the Not diagnosed but worried forum or the High Risk for Breast Cancer forum. Just follow one of the links and then click on "Start a new topic". Add a title, write your comment, and when you are ready to post your new topic, click "Submit".

    We hope this helps!

    The Mods

  • stagefree
    stagefree Member Posts: 360
    edited November 2015
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    It started with left half of my lower lip and chin for a few months.. Brain MRI was clean. Thenmoved to right lower lip and chin.. Currently have it on the entire lower lip and chin. Feels weird .. A brief chemo break showed it's probably a SE of the meds.. In my case. Well, does not keep my mouth shut, I still talk and talk.. And grateful can still bite food and look normal..

  • duck1255
    duck1255 Member Posts: 15
    edited November 2015
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    I had numb chin and lower lip on the right side. I thought it was from a wisdom tooth that was bothering me. I went to an oral surgeon to have the tooth pulled and found that I had a tumor in my mandible. It was mets from BC. I had a mandiblectomy and now have a titanium plate in my jaw. My lip and chin are still a little numb but probably always will be from the surgery.

  • SmileyKy
    SmileyKy Member Posts: 2
    edited February 2016
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    I've had a numb chin for a week now, the middle section is numb but I can still feel pain and move it around - it's just really annoying. My Oncologist said the numbness could also be a side effect of chemo but I've stopped chemo and the numbness hasn't gone away. I'm so scared it is a new cancer pressing on my nerves from inside of the skull and end up having surgery like duck1255. I'm having an MRI in the next couple of days to find the problem.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited February 2016
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    Sorry smileyky I don't have any answers. I just saw your user name and had to ask about the Ky. I'm from Kentucky but is says you are from Australia.

    Hopefully someone will come along soon and be able to commiserate. Good luck with the mri and let us know the results.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited April 2016
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    A good soul sent me to this thread. My daughter has BCM very extensive throughout the whole skeleton, and extensive skull mets. She is ER+PR+Her2+. Two days ago she started having tingling, numbness on the left side of her face (forehead, lip, chin, cheek) - and pain radiating from the left ear. She happened to have a PET/CT/MRI just 10 days ago, so yes they reidentified the mets in the skull, yes there is stuff in the left pariental..calvarium..( i don't have the scan report this minute), but it did not say it's in the brain or pushing throught the Dura.Anyway, turns out Onco is concerned, but cannot make heads or tails from it. I just found this thread, and if I understand it correctly, everyone seems to be leaning towards something with the mets?

    How do we make the docs see this? Also, she had something going on with the mandibular I know, the question is what to do, she is very scared. So am I. She did just start Ibrance a couple of months ago, it could be one the SE, but very unusual. Everything about her C is unusual. Even the fact that she does have a large lesion on the C verterbrae, I did not realize there is a connection maybe, will check into it.

    Thank you very much everyone here, hope to hear from more comrades.

  • stagefree
    stagefree Member Posts: 360
    edited April 2016
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    hi all,

    I have ncs on the left side and left part of lip. It was on the right side last year. Having had scans, they found nothing and concluded it's just a SE of the chemo and Zometa.

    I have gotten used to it. Sometimes feel I am chewing my teeth as I don't feel the pain.. Yuck! Seen an orthodondist who relieved me saying my jaw bone and teeth are still ok. For now.

    My basic and practical solution is .. What the heck, still alive! So I enjoy food on the right side of my mouth.. But do admit I get frustrated spilling out water drinking from glass.. So, I use bottled water :)) always have a basic solution in this hell..

  • JemMom
    JemMom Member Posts: 2
    edited December 2019
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    I apologize for barging into your group but I noticed my chin was numb on the right side. I think it’s been like this for a little while. Yesterday I noticed it again and started thinking about it. So I googled it. And found numb chin syndrome. And now I’m terrified. I’m going to call a dr on Monday. But what kind of dr should I start with? And anything in particular that I should tell them or ask for? I’m not one to usually over react or jump to conclusions but this is freaking me out. Nothing I’ve read about this sounds good at all. I have never been diagnosed with anything - so again forgive me to joining your group when I don’t have any type of cancer (that I know of yet) but I didn’t know where else to ask for advice

  • Kendrasue
    Kendrasue Member Posts: 107
    edited December 2019
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    Dear JemMom, if my experience could be of even the slightest help to you, I'd like to share it with you. One night I was awakened by a tingling, numb-ish sensation in my lower lip and chin on the right side of my mouth. After a few days, it still hadn't gone away. I initially called my dental surgeon, as I had implants. He didn't, however, seem to react with any immediate definitive knowledge of what might be going on, so I decided to call my primary care physician instead. He brought me in right away, gave me an exam, ordered scans, and was able to determine what was going on. In my case, it was that the scan results were consistent with cancer. Those were my results, not necessarily the same for everyone. But, to answer your question of which doctor to call, it was my primary care who was immediately able to identify the source of my lip and chin numbness, and lead me to my next steps. Why not call your primary care physician on Monday and ask to come in for an appointment based on your current symptoms.

  • JemMom
    JemMom Member Posts: 2
    edited December 2019
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    thank you for sharing your story. I will call my dr tomorrow.

    May I ask what has been your experience? How long ago were you diagnosed? What is the prognosis?