Breast Cancer Bone Mets and Facial Numbness

Hi Everyone,
Is there anyone out there who has had breast cancer reoccur to the bone with bone mets to the skull and brain who is also experiencing facial numbness?

My numbness started on my left side of face and has now moved to my chin and lower lip. Doc says I could have cancer cells in my spinal fluid which would NOT be good. Only way to find out is a series of spinal taps which at this time I am not gonna do! She also said I would be nauseous and dizzy a lot.

Please let me know and take each day with all you got!

Jane Barkley

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21 replies. Join the discussion

I have 'numb chin syndrome'. I've had it for 2 years in June. That's what lead me to my diagnosis. I wasn't feeling good for a while (lots of back pain) and all test showed nothing wrong. Then one day my chin went numb. I looked on computer to see if I should go to dentist or doctor and it said it could be possible cancer with mets. What?????
None of my doctors believed me. Mammos were all negative. The dentist did and jaw xray and saw nothing. He said if the numbness doesn't go away in 4 weeks to go to neurologist. After going to my gyn & md and various testing I went to neurologist. He ordered bone scan and that's when he saw extensive bone mets even to skull and jaw. Tumor on sternum and spine and mets to lung and now liver.
My oncologist thought that once I started chemo the numbness would go away. He even gave me his cell number to call him as soon as numbness went away. It has never gone away. My lower right chin and lower lip are numb 24/7 for 2 years. When I'm tired and stressed it gets worse. There's no pain and I just live with it. It's the only symptom that I have cancer. The neurologist said if my chin did not go numb I would have been walking around with mets for another year until it was too late to treat.
The mets to jaw bone killed the nerve in the jaw and they think that's why I have numb chin.
Most MD's never heard of numb chin syndrome.

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Hi Jane,

I have bone mets in the skull. Last November the left side of my face went numb. At first my regular Doc and my Onc thought it was Bells Palsey, but it turned out to be the mets. I looked like I had a stroke. The cancer found it way to the base of my skull which caused some swelling that damanged the facial nerves behind my left ear. If you are having facial numbness, I would insist on an MRI. That's how they determined my numbness and paralysis was in fact cancer. We hit the area with radiation and my facial muscles are slowing returning to normal. The skull area is much more complicated than you can imagine. I'm not trying to scare you, but if you have bone mets and are experiencing any facial numbess, please insist on on MRI.

I'll keep you in my thoughts. Please keep us posted.

Stacey

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Hi ...wow.....thanks for replying. I did not expect to hear from anyone, but so so happy to have others to talk about the great numbness we feel together. Not happy that you guys and I are in this boat, but since we are, we have to keep it afloat, keep it sailing......we shall not sink!!!!
Stacey, I have had MRI's,but yes, great advice. Seems like with me I had all of the bone mets and brain lesions before the numb chin, whereas you all had the numb chin first??
I have decided NOT to have the spinal tap on June 20 to see if I have cancer in my spinal fluid. I am not nauseous and do not feel dizzy, so I am just going to go with my usual bone scan/cat scan of body which I have every 3 months. I may request a MRI on my spinal column to see if anything shows up....
My oncologist told me that I would have months to live if cancer cells were found in my spinal fluid. I am just not going for this......I think all of the cyberknife and radiation I have had to my skull has caused some nerve activity/damage.......I just had cyberknife in early February so it could still be affecting the nerves while it kills the tumors.
Oh well........I do appreciate you guys posting a reply, and I will keep you both in my thoughts and prayers.
My original breast cancer was in Nov. 1998...than again in 2006....still here and have not completed my journey on the Earth!
Love and Peace to You....Barkley

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Hello again,
When you have time you can read my profile and learn all about my journey from 1998. I was diagnosed with bone mets to spine and pelvis in 2006. Just felt I needed to mention that cause I didn't say anything about it in the above replies, and I didn't know if you had read my profile which explains it all.
:)

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Hi there,

I have bone & liver mets - with mets to the top of my skull. I developed a numb jaw and lip on the left hand side of my jaw a few months ago, Felt really strange when putting on lipstick or just touching that area. Anyway I did a little research online & found that this can be caused be low levels of circulating calcium in the blood... I can't remember the name of it right now and the name for too MUCH calcium is close to the name for too LITTLE (hyper/hypo calcemia?) - so I don't want to steer you wrong. The other indicator was a strange little blister I had developed inside my lip - looked like a blood blister - they even had a picture of it on Wikkipedia! Well, this all rang bells with me as I'm on Zometa, which as you know, sucks the calcium from your blood in order to fix/repair bones... I mentioned it to my chemo nurse and she said it sounded a reasonable idea. Anyway, I upped my calcium/D3 supplement for a while - in fact, I had been lax in taking it! And it's now completely back to normal! No numbness at all!

Well, this may not be the answer for you, but it could be worth a try before having spinal taps or other radical things... I wish you all the best with it HippieMom - let us know how you get on...

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Hi Jane,

I actually had the bone mets years before the facial paralysis happened. The paralysis just alerted us that the cancer was active again in my skull. It happened very fast...almost overnight.

It's interesting to hear about cancer cells in spinal fluid. I have had dizziness and nausea for almost a year now and no one can figure out why. I'm not sure I want to know if the cancer cells are in my spinal fluid.

I've been on this cancer journey since 2002. Bone mets since 2005. I hope we both continue this journey on earth for a long long time.

Take Care,

Stacey

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Yes, I have mets to the scalp and bone from BC and the left side of my face was semi-numb until the Femera kicked in and the feelings went away for several years, even when I had to change to different meds. When the Xeloda stopped working the numb feelings returned but they are now going away again thanks to Megace. Active cancer on the scalp caused mine.
God Bless, CurrentRiverGal

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Wow....so good to know we all have one another. I did appreciate the posting about calcium/Zometa, DeVega! My radiation-oncologist mentioned that it could be the Zometa. I went and bought 750mg. Calcium yesterday!! I will try it. Anything that could help!!!!
RiverGal- Have not heard of Megace???? Is it chemo in port or vein, or pill? Wow. I have been on Abraxane since last March 2010.
Everyone take care this weekend. Please, let's stay in touch on our numbness! We are still here, and we are gonna continue to live our lives! Do not ever give up!! Smile, paint, laugh, watch old movies, etc.....and don't forget-THRIFT SHOPS-FLEA MARKETS!!!
I love doing old stores!!
Peace, Jane
P.S. Stacey- Cancer cells in spinal fluid from breast cancer are 2%-5% chances is what my doc said.....so, don't worry. Perhaps, mention it to your doc.

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I was reading through all the replies and now feel more enlightened on my numb chin syndrome.
Mine started to improve between tell my onc and my next treatment. He worried me when hesaid "that could be ominous". Well, that scared me but he said that since it's improved to just watch it. Mine started in March and is almost gone now. It's also on the left side of my face but one of the area of my mets is my parotid gland but on the right side of my face. I too was told I had bells palsy and when finally sent to an ear, nose and throat dr and tested they saw the tumor in my glad and biopsied it. Hardly anyone has ever heard of BC settling there but I'm unique I guess. I also had it on my skull and a growth on the back of my head and it turnes out mets to my spine.
I'm going to also try upping my calcium intake and seeing if that makes it disappear for good.
It does have me wondering though how our bodies can do something like the numbness to tell us something is wrong.
Marianne

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Hi Friends,
Good to hear from you, Marianne. So you had your numb chin almost 2 months? I am so happy it is gone for you!! I am still hoping mine will disappear as quickly as it came.
I just had a great 2 days at our county flea market...made over 200.00!! Forget the money, I was just happy I had the strength and endurance to do it as it was very hard work setting up/taking down. I even managed the tree roots on the ground in our little booth area. haha.
Please, everyone keep me posted on your numb chins and such. I think we feel better knowing we are not alone!
Peace,
Jane Barkley (hippiemom54)-really not a hippie, folks....born too late!!

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Hi Mazie1121. The cancer settled in my left parotid gland. It was also in the base of my skull which apparently is a very vital area. There was all kinds of "hurry up, this is critical" activity by my Med Onc and Radiation Onc when they found it there. One day I was having an MRI and the very next day I was getting radiation. The radiation destroyed my parotid gland. I now have chronic dry mouth. They said my remaining parotid gland would eventually compensate, but so far it has not.

There's no end to the things this stupid disease does to the body. But I'm not complaining. I'm 6 years with bone mets and still going strong. I can't do all the things I used to do, but I still work full time and still enjoy my life.

Take care everyone

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Wow, didn't realize there were so many people out there in a similar situation. Last July, I was experiencing horrible headaches. Come to find out, I had two tumors. One was on the 5th trigeminal nerve, causing a lot of pain on the left side of my face. Had gamma knife, which helped temporarily. 3 months ago, I got facial paralysis. It really stinks. Had plastic surgery to help.

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Hi All,
SRenea, it was good to hear that you had radiation on your Parotid. I've been pushing my onc. to refer me to have radiation but can't get him to budge yet. I have one lymph node that is right on the jaw and effects my opening my mouth. I met with another doc yesterday to see if I'm eligible for any clinical trials and brought up the radiation to her and she said that when they discussed it on tumor board that they felt it would be too toxic to do.
Can I ask where you had it done and dr name? Maybe I can have my onc call yours.

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Hi Mazie.

I had my radiation at MDAnderson in Houston. My oncologist is Dr. Daniel Booser. I highly recommend him. I had severe facial paralysis and cancer in the base of my skull. The base of my skull is why they did the radiation. Apparently there's all kinds of stuff happening in the skull base that controls many things. When they found the cancer there they got very concerned. My onc called the head of radiation oncology that day so they could get the radiation started the very next day. They said they usually try to avoid radiating the parotid gland but in my case they could not because the cancer ran right through it.

Usually when you think of radiation, it's a six week or longer ordeal. I only had 10 days of treatment and they were very low dose. My skin didin't even burn. But it was enough to destroy the cancer.

I hope this helps. Keep me posted.

Stacey

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I reciently had severe pain on my right side of my face....I am on fentanyl patch l25 mg. and was taking 2 oxicodone l0 mg and it never helped the pain. I went to the dentist and he said I had no cavities and mouth looked good. Pain continued I went to my Primary dr. who recomended going to the oral surgeon...I went the next day to the oral surgeon she did a panarama view xray and said that I didn't need any dental work, however she didn't like the look of the jaw. she called my primary dr. who called the ongologist and together they recommended ct test ,bone scan, mri, etc.....they discovered that the bone mets went to the jaw, However they are not sure if it also could be onj caused by zometa or xgeva besides the mets to the jaw bone.....oncologest took me off of xgevia...... ONJ is a very painful rotting of the jaw bone caused by zometa or xgeva a very ugly painful sight...no more xgeva for me....I am stage 4 with met to all of the bones, liver and lympnodes by the pancreas...I will be on chemo for as long as I live......at present time I am on doxil and hope that it will do a good job.... if not I will go to another Chemo drug.....I have been on taxol, avastin and now doxil....... 21 yrs ago upon original diagnoses of breast cancer I had a double mastectomy and was on chemo drugs of 5fu, etc. I hope my info. might help you.......Wishing you good health....LIVE, LOVE, and LAUGH....teddybear123.......Annette

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hello brave women thanks for your stories after being all over to find out why I hav a numb chin I feel like I should have asked you guys first! Three different docs with three diffeent opinions!! More later to bed xxx

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Wow!! You women are awesome and so brave ! Inspiring!! I had parotid gland removed on the left side of my face one of the side effects is facial numbness, which I didn't get, but worth looking into aswell as all the other things mentioned. Live strong beautiful ladies....

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Hi Hippiemom54
I have mets to my skull, and developed numbness in my chin and around my mouth. CT scan revealed that bone osteoblasts were impinging on the mental nerve. I had radiation to the area, and the numbness is almosts all gone (it took a few months)
Hope that helps
Lynn

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Hi. Thank you so much for your reply! Did you have cyberknife? What is the mental nerve? They call mine the 5th cranial nerve. I am sure hoping the numbness will disappear, but even more, that I will be able to chew again!! Stay in touch,please.
Hippiemom54 :)

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Hi Hippiemom54
I had sterotactic radiation - which is another form of high dose targetted radiation, but not cyberknife.
And the "mental" nerve, as I understand it, it the one that snakes through the jawbone.
Lynn

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