Numb Chin Syndrom
Comments
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Maki - Keep us posted as to your sister's progress. If you feel up to it, let us know her location. Given the wide population represented on this board, someone might know where she can get a second opinion.
AmyF - Best of luck with the Neuro. Hope it is nothing.
Jennifer
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I certainly will! And I am following your stories ladies. If I hear anything that might help ( I do read a lot!) I will post. My sister lives in Serbia, I'm in the UK
Keep the faith!
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Maki, I'm sorry to hear your sister is having this strange problem and I hope the doctors figure it out. I must say, Serbia would not be the place I'd like to be treated for breast cancer. My heart is with her.
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Thanks Jennifer:) if it ends up being anything, I'll post here incase it helps maki's sis or others.
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Well, I went to the surgeon and he felt a needle biopsy would be enough. It wasn't! The report stated inconclusive but highly suspicious. So I had an excisional biopsy of 2 supraclavical nodes done yesterday. I saw my onc again the day before and was pleased that he was very open to reading the info I took in on Numb Chin Syndrome. He seemed interested and we discussed the article. He admitted he had never heard of this before. He told me he would be looking at all the info along with the biopsy results regarding what comes next. If the nodes are malignant, he says he will send me for a pet scan.
I still feel in my gut this is not going to turn out well. I will deal with it when I know for sure.
I am pulling for Amy and maki's sister, I will also share what I learn.
Fran
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FJH,
it is such a smart decision and it takes so much courage to wait for the results and stay calm in between. And it's the only way. My sister still hasn't learned to deal with it that way, neither have I (I know, how dare I mention myself at all, but I love my sister with all my heart, her pain is my pain). So fingers crossed for you!
You mentioned you had rib and muscle issues and that you were told it was not due to mets. What kind of problems did you have? My sister had terrible pain in her chest a year ago, first started when she had second operation (to have faulty ''no name'' implant removed). They then suspected mets, but later on decided it wasn't the case. We now fear they made the wrong decision then but we'll see. She has done MR of her head, they are very sure there's nothing wrong ab her scull or brain. So that gave us some relief, but I just don't have full trust in them. It took them a year since she first asked for mammo to decide that yes, she's got a cancer, let's treat her!
Also, I have to say, my sister wouldn't dare ask her doctor to read something she found online. We even had to make a ''strategical move'' and make it up that I have a friend here with the same symptom who was diagnosed with mets, and that it worries her so much, in order for them to look at it ''harder''. They are very knowledgeable, they have studied hard and long to get where they are, but I sometimes get a feeling those women are just a number for them, they seem to forget they're not delivering babies but very very sad news to them. And I don't think they are doing enough. My sister had a low blood count for months and months, but it never occurred to them to do smth ab it. If a ''healthy'' woman gets anemia they'll treat it as an urgency, but a breast cancer patient seems to be forced to accept it as it is. Even if you find yourself a doctor who would make that special effort he/she normally has too many patients and not enough facilities or working hours so to say. It's really hard. They invest very little in that problem, which makes my sister and those other women feel as if they are not worthy enough. Spent some time with her at the institute where she was operated and I have to say, it was sooo sad. Waiting for her to get out of the operating theatre is smth I'll never forget. Tens and tens of people in that little coridor waiting for smaller interventions (smth like outpatients department in the middle of the oncology institute), people coming in and out of the room where my sister's being operated under full anesthesia! And I hear them say: ''Gosh there is a young woman inside, they operate her from BC'', saying it half in fear half in disgust. Horrific! Apparently, the nurse would chat to them about what's going on behind the paravan! And I am sitting and waiting and praying that she's alive, thinking of how to face her pain and her scars and then I hear that! Couldn't help it, I asked a 'gentleman' who made a remark if his toe nail he just had fixed hurt a lot, he said 'yes'. Then I said, ''sorry to hear that, I hope my sister won't hurt too badly once she wakes up after this operation''. That shut them up. My sis later told me that they only had a piece of white paravan in between where she was and the other part of the room where other interventions are done. It took me couple of days of running after doctors up and down the halls to finally get an 'update': ''She'll be OK''. That was all the doctor had to say and he felt terribly annoyed that I chased him to ask ab my sister, his patient. They invest money in fancy buildings and shopping centers, but not in hospitals nor in training for their doctors to learn how to talk to the patients and their families...
Sorry I went on about irrelevant things, but only mentioned this cuz CoolBreeze made a remark. Promise this is the last time
By the way, great blog and you are such a character, CoolBreeze! Some people just have a great impact with every little story they say!Amy, good luck, girl!
And everyone else, whose stories I still hadn't had time to read (I'm trying to deliver my translations on time, but I am failing miserably), good luck and all the best!
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Maki, I feel so for your sister and totaly understand your feelings toward her. I am very close to my siblings also. No matter the educational value that medicine brings there is still a lot of ignorance in dealing with the patient as a person. I am sorry your sister has been treated poorly. Unfortunately it happens here also, you can read many stories of such ignorance on this site. I was a bit nervous to offer that info to my onc and did say I hoped he would not be offended but it's my life we are dealing with. He was very respectful and I was impressed by his honesty. Turns out a lot of doctors don't seem to know about Numb Chin Syndrome as a symptom of mets.
As for the rib and muscle pain, I am still not sure if it is related to the mess I'm dealing with now. I started with a very intense pain just under my rib. I had an US done to check my liver, nothing there. I had xrays from head to toe, again nothing. I had a bone scan and it shower something in that area. My onc said it was not bone cancer but to pursue it with my pp. Well after two weeks of constant pain, it just left. Then about 3 days later all the muscles in my upper back began to spasm and the pain ran down both sides of my rib cage from top to bottom. I have been trying for a year to find out what is causing this. It comes in episodes that last for about 3 weeks then some relief for awhile then it all starts again. The last answer I got was, possible Fibromialgia. Since the numb chin and then the lumps in my neck, I feel it will all connect in the end. Just have to wait and see.
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Forgot to say, my sister feels her chin and lip are now even more numb, and she is very very itchy there but scratching it gives no relief. She is given B12 injection every other day (by neurologist's order). As I said, brain and scull MR showed nothing apart from a benign cyst on top of her scull that they are certain has nothing to do with this. Jaw orthopan scan showed no problems. Glands in her neck are OK, she had that checked too. Now waiting for a full bone scan. Also waiting for the hospital to get tumor marker tests (they run out!). She'll check LDH level after couple of weeks again, as it was increased. Think it's now a waiting game.
FJH, thanks for sharing. My sister had that pain for several months constantly. Then it just disappeared and never came back. She was given Aredia then and it was on her request really as some doctors told her she had mets, some disagreed and she couldn't just leave it there. We only read about biphosphonates online and after mentioning it to the doctor she said: well ok that might help a bit (?!). MY sis bought it in the pharmacy (national health system wouldn't pay for it unless the team of doctors all decide that the patient is terminally ill), took to the hospital and they injected it. It must be a year now and she's got no pain at all and it used to be horrible. Hope that never comes back.As you say, it surely must make sense eventually. And I do believe it will be good news for you both. I look at my sister and she just looks so strong and determined. Surely, it must be fine! Fingers crossed.
Thanks again!
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I think this might be useful.
Numb chin syndrome as the presenting symptom of carcinomatous meningitis:
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There is not a single thing that is not a presenting symptom for cancer. Nothing.
That's why a lot of us tell the newer women not to google. Google is only useful when you already know what you are dealing with, not for diagnosing yourself. All those women on the "not diagnosed" or "afraid of mets" boards spend hours and days googling when they don't know they have cancer, and always, always can find a symptom that relates to them that confirms their fears. Almost all of the time, they were wrong.
That's why we typically don't do it here and don't recommend it for others. We google when we know what we have, when our doctors have told us what is wrong. Then we can look up treatments, medications, side effects, etc. We don't google to diagnose because we have learned the hard way that it simply cannot be done accurately.
We could play a little game - name something, anything. Numb chin. Numb butt. Curling toes. Anything, and we can find an article that will tell us that's a sign of cancer.
But, many of things are so rare that doctors haven't heard of them and we who live with it daily haven't heard of it, and it doesn't mean that people are cruel or mean or stupid or uncaring. It means that it almost never happens.I hope whatever this syndrome is, it is not cancer. My very best to the two of you worried about it.
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Dear CoolBreeze, thank you for your wishes.
May I just clarify, in case you ladies got me wrong -- I am not googling to diagnose my sister. I am old enough to know that doctors and hospitals are there for a reason
I am doing it so that we have as many information as possible. I personally want to understand what's happening to her and I want to make sure I haven't been passive in what appears to be a fight for her life. She wants to know what the presenting symptoms are (all of them) and if she's got any, she wants them checked. For example, she had the MR done of her head and the doctor said, ''see, told u it was all ok''. Then my sister asked, well can it be that I got the problem with other bones or anything else that present this as a symptom (only asked cuz we read that it could be the case), after which the doctor said, ''ok, we can check that too''. We can check that too?! What kind of reaction is that?And they failed her before. When she first reported a lump, we both knew so little about BC and we were so naive that we thought ''surely, it can't happen to me or my sis'', so she left it there when docs said it was fine even though she wasn't convinced. Several months later she got unsettled again and decided to urge them to check it out as it just looked like a cancer, from what she read thanks to Google. It was almost a year since she first asked for help that they finally decided to take the lump out of her body. By that time it grew to 2,5 x 2cm and it was cancerous indeed. So I will not assume, ever again, that doctors will do everything they should do at the time. I know noone does anything intentionally to hurt other person but I also know doctors are only people, they get tired, they have too many patients and they don't always give each of them their undivided attention. At least not where she is at the moment. When I once reported a lump myself to my GP in the UK, she examined me and thought it was nothing bad but she said and I quote: Those things you just don't leave unchecked. After couple of weeks I had an ultrasound and biopsy and it was confirmed it wasn't cancerous. My sister waited for a year. And it was bad news.
I do have a strong faith she will be fine, I am an eternal optimist, but I would be mad to just assume it and not bother understanding what's going on. The steaks are too high. I do believe that the docs will read the scans properly once they order them and get them in their hands. And I do believe that once they know what the problem is, they will give her the right treatment. I don't assume I could ever do their job. I just don't want them to wait till it's too late (if that's the case) so I prefer asking questions. I believe cancer is smth you never get rid of completely and you have to be cautious.
So me posting a link was just sharing information with you, ladies. And what it is really is just an account of some other (real, not imagined) patients who had the same syndrom, issued by a respected organization. This forum itself is found through Google and hosts your own true, real stories about symptoms, diagnosis, treatment. So where do we set the mark which info are useful and which are not I wonder. I think one has the right to know it all.
If you only read the first paragraph from that article, it gives you enough reason to think ''right, I should check it out'' and no reason to think ''nah, that's rubbish''. It says: The numb chin syndrome (NCS) is a rare neurological condition which origins in the absence of a dental cause and is most often associated with malignancy [1–5]. Patients develop orofacial paraesthesia typically localized to the chin and lower lip.
Every single respected website I read regarding this symptom says that with BC patients the first thing that should be suspected when this syndrom occurs is malignancy (that can have different roots so it needs to be looked into). Doesn't have to be, of course, but is suspected.
I am sorry if the link made you feel alert. I see it as 'being informed' and nothing more than that.
All the best!
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Coolbreeze
First off, I am not new to all this. I certainly went through my share of thinking every new ache or pain had to be the dreaded return of my cancer but when I am hit with something I have never experienced before, I certainly do investigate any way available and that includes google! When I came upon the articles on NCS I wasn't even thinking cancer. It appeared in many articles and has been well documented as something that should be investigated in those who have had cancer. It was the reason I made an appt. with my onc, who then also found lumps in my neck. I am not stupid. I don't take everything I read as gospel but neither do I assign my future entirely to doctors. It is my responsibility to be my own advocate where my health is concerned. So when you say we don't google until we are dx by a dr., I will never be included in your "we". Knowledge is power even if it doesn't always apply to you!
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FJH & Maki, First off let me start by saying that yes, the numb chin can be a presenting symptom for LM mets, and if I were in your shoes I also would be discussing this with my onc for further testing. However, LM can be very, very hard to diagnose due to the false negatives that are often given on testing. I certainly would rather be prepared with a plan in place if this dx was ever made than to be caught unawares. There was a lady on these boards who did have the numb chin and was later dx with LM. You can use your search to follow her experience. Good luck to both of you.
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Karen4u,
thanks for joining in. Can you please tell me what LM stands for.
My sis just told me she now has a strong pain in her jaw, she cannot talk or chew easily. Still numb and feels a pain similar to the one you get if you are heavily burnt.
I feel a bit scared and conused at the same time. But I just told her, under no circumstances should we panick. She is going to docs tomz to alert them again to speed up that bone scan and everything else.
Best of luck to all of you ladies! Many regards from my sis as well!
cheers
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Thanks so much Karen! I will look into the case you mentioned.
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Maki, LM is leptomeningeal metastasis, which is mets to spinal fluid/meninges. I am certainly not saying your sister has that. It is not a common site for mets but with ladies living longer with breast cancer it has become more common. Several years ago my onc was concerned I may have it and ordered testing for me which turned out to be negative. I cannot even remember now what my symptoms were at the time to prompt her concerns. So yes, you can have possible symptoms of LM and not have a metastasis, as Anne referred to. We try to educate ourselves and do the best we can in the advocacy of our health without crossing that line of paranoia.....and if you are like me, sometimes you toe that line more often than you would like.
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Karen,
thnks so much for the info. Do you happen to remember which tests you did for that. Sorry if Im asking too many.
This is all so hard indeed. And paranoia is sometimes inevitable and so human. But if we support each other and get to know more it will be easier to deal with.
FJH, what is your next step now and how do u feel?
cheers
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Oh and I too found those other threads. Brain and bone mets seem to be most frequent cause. And then spinal fluid, as you said, Karen.
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Lumbar puncture.
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well, of course, silly of me to ask. thank you! Hope you are feeling OK?
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Thank you again Karen!! I don't remember the search option back when I used to come here all the time. I did put in a search for numb chin and was surprised to see so many posts here. It was very helpful for me to read what others have experienced.
Maki, I am still waiting for my node dissection results. My onc said if it was positive then a pet scan will be next. Fingers crossed!
Fran
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Fran, fingers crossed, we can't wait to hear how you are doing.
As for my sis, her chin and lip is still numb but she also has a very strong pain and burning sensation in the skin of her chin and cheek, but not inside her mouth, which led her neurologist to suspect she might have what is called trigeminal neuralgia. She has lost some weight already, as the pain gets far worse after eating, so she is avoiding solid food and eating very little, she is practically living on fluids. Still waiting for the bone scan and tumor marker test. Whatever the cause, this symptom is a monster I must say, she is soo exhausted. She is now having a therapy to possibly ease that pain (Movalis injections).
The worry here is how to diagnose it without a surgery/biopsy. :S
Here's the link I found about TN, if anyone is interested:
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
And I found some other links, for when TN occurs due to breast cancer.
Isolated trigeminal nerve metastases from breast cancer: an unusual cause of trigeminal mononeuropathy:
http://www.ncbi.nlm.nih.gov/pubmed/9586936
Solitary metastatic breast carcinoma in a trigeminal nerve mimicking a trigeminal neurinoma. Case report:
http://www.ncbi.nlm.nih.gov/pubmed/8814174
A case from the breastcancercare.org.uk of a woman with trigeminal neuralgia due to BC:
Metastatic Carcinoma Presenting as Neuralgia Involving the Trigeminal Nerve:
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Hi everyone! Hope many of you have been feeling much better lately...
Fran, did you get your dissection results? Are you feeling better?
My sister has had many tests in the meantime. Tumor markers slightly up, scintigraphy showed new changes on her 7th and 8th bone and the previous markings she had have stayed the same. Athough that terrible pain in her jaw stopped, her chin is still numb and she now has aches in her ribs, just about where they saw those new developments. She also had a pain in her back for couple of days and it kind of reminds me of the muscle pain you described that you had last year, Fran... She is now waiting for a PET scan. It will be 5 years in February since the beginning of this frightening and exhausting battle for my sister. The hope never leaves me, that she will be the winner!
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FWIW- when I was going through Chemo- actually the Taxol part of my ACT, my chin had numbness and I was told it was facial neuropathy from the taxol. I have not had it since about a week or two post last chemo- which was last february
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Well, bad news on our side.
My sis has liver mets and probably mets on her ribs. PET scan next week followed with FAC chemo straight after. She is in lot of pain now and feels very exhausted.
She saw liver surgeon to talk ab possible operation or any other procedure (RFA) but he seemed unwilling to do it cuz of the problem with her ribs that is unclear. Asked for a PET scan. Now waiting for that. In the meantime, the doc that prescribed FAC protocol is urging her to do it straight away.
Need advise from you ladies. We feel that they made decision about chemo based on screening that doctors themselves said was incomplete and not so precise. We want her to get the right treatment now and wanted to wait for PET scan. We managed to book it for next Thursday but her doctor insists that she receives chemo without waiting for PET scan results. How risky is it to wait?
I am so angry, it took them 2 months to do the scan and realise she's got liver mets. Now they are urging her to do smth ab it and she just wants the best treatment available. No more mistakes.
I hope Fran is OK, she's been quite.
All the best ladies, fingers crossed for all of you and my sis!
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Maki, why do we have to wait so long, as while we are waiting, the darn cancer is probably on it'sway travelling to other body parts, does not need any encouragment doing that and meanwhile they leave us waiting til we have no chance to get better as its hold gets a hold. I am so sorry to hear about that of yr sister, i really hope they pull there finger out and get on with things. Warm gentle hugs to yr sister and you and family. thinking of you. OOOXXX
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Midnight,
thank you so much for your kind words. It does mean a lot.
My sis got FAC protocol chemo, got her first doze yesterday. She's got severe bone pain and is quite exhausted. I am trying so hard to stay positive for her. I do believe one should never give up.
Good luck to you Midnight, and all other brave ladies on here!
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Just wanted to wake this thread up (even though it seems to be riddled with drama) as I am currently dealing with what seems to be NCS.
I used to be somewhat active on this site with my original diagnosis in 2012 but forgot all username and login info- so after lurking since my newest diagnosis, I decided to create a new profile to ask about my numb chin.
If it were just numb, I'd be fine but it feels like my skin on my lip is burnt and raw!! It can also feel kinda itchy but doesn't respond at all to touch- nor scratching! I find myself chomping on that side of my lip while eating, which is disgusting, and sometimes the surges of pain wake me up at night!
Anyway, my question is less about the cause and more about getting relief. Any advice on how to make it stop? Has anyone had luck with it just going away? Should I mention it to my radiation onc next week as a possible place to radiate? Would that help? Are there certain types of meds I could take. I already take gabapentin for nerve pain? Could upping my low dosage help? Ugh!!!
I've had bad test result after bad test result, inexplicable pain, incredible sadness and depression regarding my diagnosis and never felt the urge to post here but THIS I cannot handle, I am going to lose my mind!!!
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Franken -- welcome (back!) to Breastcancer.org. We're sorry for the reason you had to come back, but we're really glad you're here.
We're so sorry you're dealing with this terrible side effect. We thank you for boosting this thread again -- if for some reason it doesn't gain traction, please feel free to start your own thread in the hopes of getting some answers soon.
We wish you the best. Please let us know if there's anything we can do to help!
--The Mods
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Frankenboobz, I would call your MO; you may need a brain scan. KeepUs posted.
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