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Numb Chin Syndrome - feeling terrified

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mariabrosa75
mariabrosa75 Member Posts: 5

Hi everyone,

I hope this is OK, I am posting this on behalf of a dear friend with MBC, Maria. Shes sitting next to me as I type this but is feeling too overwhelmed to do this herself and asked me to post.

Maria is 53 years old and was diagnosed stage IV in 2015. She currently has mets to her liver and bones (mainly bones in the legs and hip). She has been on ibrance, Verzenio and Piqray.

About a month ago she started experiencing a bit of numbness in her chin. It came on randomly and has spread to her entire lip area (top and bottom). MRI of the brain was clear, she is waiting for a jaw MRI but no date yet.

We made the mistake of googling and came across numb chin syndrome, which apparently has a dire prognosis of months. Maria is now convinced this is what’s happening and she is terrified and overwhelmed.

There is such little information online so she wanted to post here in the hopes that someone else has come across this or knows something. We’re both confused and had a few questions:

1) why is numb chin so dire? The few websites I found cited NCS as the first sign of a metastatic disease and that people would often die within months of diagnosis, but what does it mean for someone who already knows they have MBC?

2) If numb chin is caused by new mets in the jaw, is this bone or brain mets?

3) Can bone/skull mets turn into brain mets?

Thank you all in advance, we are both so worried

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,942
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    Dr. Google is a very bad diagnostician! I recall a few members having posted about this syndrome so please try the search function to see if you can find their posts. Most importantly, we are not medical professionals so your friend’s first step should be to make a doctors appointment.

    Mets to the jaw are bone mets (and not terribly common) as the jaw is bone, not brain tissue. Bone mets do not “turn” into other mets. Metastasis is not like the spread of bacterial or viral infection. It is clear that this is very concerning to your friend and anecdotes on a message board can only offer personal stories which may have nothing to do with her situation. Please have her see her oncologist as soon as she can as that will be the only way to truly ascertain what is going on. Take care

  • mariabrosa75
    mariabrosa75 Member Posts: 5
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    thank you for your response! I agree she needs to see her oncologist - unfortunately they’re very busy and not able to see her/book her for a scan for another couple of weeks. In the meantime she doing a lot of googling and worrying.


    I think I just don’t understand why NCS is so fatal - like, is this just for people who don’t know they have cancer because it’s a sign that it’s spread? If you already know, is it just like getting another bone met in the leg (except in the jaw or skull obviously). It’s so confusing.

  • mariabrosa75
    mariabrosa75 Member Posts: 5
    edited March 2023
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    thank you for your response! I agree she needs to see her oncologist - unfortunately they’re very busy and not able to see her/book her for a scan for another couple of weeks. In the meantime she doing a lot of googling and worrying.


    I think I just don’t understand why NCS is so fatal - like, is this just for people who don’t know they have cancer because it’s a sign that it’s spread? If you already know, is it just like getting another bone met in the leg (except in the jaw or skull obviously). It’s so confusing.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,942
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    I think it is counterproductive to assume your friend has numb chin syndrome and to leap to it being fatal. As I mentioned, a few members have commented on it in the past but it's not prevalent and I don't recall concern over fatality. Again, NONE of us are medical professionals. Waiting is no fun but leaping to the worst possible conclusion doesn't change anything and simply saddles you and your friend with stress. Worry is natural in this situation but try to maintain some perspective. Take care

    *Here is a link to an old thread. Please note that it has not been active in several years. https://community.breastcancer.org/forum/8/topics/734506?page=5#post_5492471

  • sunnidays
    sunnidays Member Posts: 160
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    That is a bit of a strange post, could it be something to do with the long-term use of Bisphosphonates such as Zometa as they can affect the jaw?

    https://www.medsafe.govt.nz/profs/puarticles/ONJNZMJ.htm#:~:text=Osteonecrosis of the jaw is,high doses of intravenous bisphosphonates.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi Maria,

    As xbrnxgrl notes, Dr. Google is something to be avoided. Frequently information is very out of date. As an example, when I was first diagnosed with MBC I had a significant right pleural effusion. The information on the web painted a dire picture and I was convince I had less than two years. Surprisingly, my MO was very upbeat when I saw him saying he expected me to do well for a good long time. That was seven years ago.

    With regards to the numb chin, I can provide my personal experience. I have extensive bone mets including mets in my c-spine and base of my skull. I was having issues with numbness in my jaw and face when these were found. However, we decided on a wait and see approach as the symptoms were not that bad and there were risks with treatment. (I should say the mets were found with MRI - I am surprised they would not have done the entire head when they were checking for brain mets.) A year later I started getting killer headaches and so, while there was no obvious progression, we decided to radiate the spots. That eliminated the headaches. That was a couple of years ago now.

    Bone metto the c-spine and skull are uncommon but it does happen and they can cause a number of neurological symptoms. I’ve since had to have radiation to my c-spine as a met was causing numbness and tingling down my right arm, impacting the function of my hand. While many bone mets cause no symptoms, those in areas where there are a lot of nerves can create some havoc but radiation therapy does wonders to resolve these issues when they arise. I know it’s hard to be patient but your friend’s oncologist will be able to ensure they are doing the most appropriate scan and then refer her to the RO if appropriate. Hopefully they will have answers for her soon.

  • pirate_girl
    pirate_girl Member Posts: 31
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    I will jump in with my experience. I was diagnosed w/ MBC in Aug. 2019; about a year later, 9/2020, I developed left-side numb chin. It is often a precursor to finding metastatic cancer according to studies, but not in my case (you need to read those studies carefully and look at the dates -- the ones I remember were old and for people who had not been on any of the latest treatments for MBC yet). I am on Xgeva, but my MO said the numbness is from bone mets - mets pressing on the mental nerve. I had brain/neck MRIs and scans w/ an endodontist (regular dentist referred me) and also saw an RO - there was some sort of activity/ lesion on left side of mandible, but nothing actionable. So I have learned to live with it.

    Meanwhile, this past fall, 10/2022, I developed right-side cheek/sinus/upper lip numbness. Went through brain/neck MRI (also another scan w/ my endodontist just to rule out any dental issues) -- I have mets in my skull / dura (not in my brain, tho). I started Enhertu in mid-Nov. and have had 5 infusions -- the numbness has not gone away, but it does seem a little better. I will have a follow-up MRI soon and meet w/ my RO to see if there's anything to zap on the right side. It's worth getting checked out in case there's something significant that might benefit from radiation.