Inner ear

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TwinkleCat
TwinkleCat Member Posts: 85
edited August 2018 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello everyone -- sorry for the long explanation! I'm generally not a worrier... this is the first time through this whole thing that I've really started to feel anxious!

I am 41, and I was recently diagnosed (7/23/18) with invasive mammary carcinoma in the right breast with ductal and lobular features. I had noticed in late June that my right breast was very firm and appeared larger than the left. I had a diagnostic mammogram and ultrasound on 7/5, which identified a suspicious 2cm mass, BIRADS 4. I had an ultrasound-guided core needle biopsy on 7/16. Following the pathology results on 7/23, I had an MRI on 7/30, which showed diffuse disease in the right breast -- level I axillary nodes suggestive of extracapsular extension, and level II and III axillary nodes looked suspicious. I am scheduled for a PET scan on 8/8 to assess for metastases, and another ultrasound on 8/9 to assess an additional mass in my left breast that was identified on the MRI.

Co-incident to this, I started experiencing dizziness on 7/1, and felt like my left ear was blocked. On 7/4 it was so bad I had my husband take me to urgent care -- they did a CT and didn't see anything of concern, gave me an urgent neuro referral. I saw a neurologist on 7/6 -- she did a workup and concluded the dizziness was likely due to an inner ear issue. She gave me a referral for ENT with an audiology workup, and a medrol dose-pak. The earliest I was able to schedule the ENT/audiology appointment was 8/6. The dizziness and ear fullness went away about a week after I finished the steroids -- so it wasn't even on my mind when I received my cancer diagnosis on 7/23. I didn't cancel the appointment, though, because I still wanted to make sure everything was OK with my ear.

Then about a week ago, the ear fullness and dizziness returned -- and I have now noticed that I am having trouble hearing out of my left ear. I mentioned it to my breast surgeon when I met with the medical team on 8/1 to discuss the next steps -- he thought it was probably not related, but said there is still a possibility -- and that if it is related, it would show up on the PET scan.

I ended up seeing the audiologist yesterday, due to some scheduling issues (I'll see the ENT on 8/6, as originally scheduled). She confirmed that there is no fluid in my ear, and that the hearing loss in my left ear is nerve-related. We didn't discuss possible causes -- that will be with the ENT on Monday. When the clinic notes became available on the patient portal, I read that she recommends additional imaging with particular attention the the cerebellopontine angle. I mad the mistake of googling "cerebellopontine angle," and I see that CPA tumors are not uncommon... and that a small proportion of them are caused by metastasis -- including from breast cancer.

So now I'm just terrified that this is the cause of my seemingly unrelated inner ear issues!

I am trying to talk myself down... I had a clean mammogram last November, and an unremarkable clinical breast exam in January. I know it's possible to go from nothing to metastatic disease in that time frame -- and for the first noticeable symptoms to appear after it has already metastasized... but I have to think the chances of that are pretty low? I am holding out hope that I just have a viral infection or that this is related to my Crohns or some other thing that is not related to my cancer... but it is so hard not to worry!!!!

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited August 2018

    I had dizziness and fullness. I think it's stress. I practice Jin Shin Jytsu to relieve the pressure.

    For your left ear, lightly touch your cheekbone with your left fingertips.

    Your right fingertips touch your left collarbone.

    I use the middle fingertips. Hold for 20 min. Hopefully you'll notice a difference pretty quickly, if not the next day.

    I know it's very worrisome. Google Jin Shin Jytsu. My cancer hospital offers it to all cancer patients and the oncology staff.

    Good luck!

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Thank you for the tip, Zills! I will google it. Regardless of what is causing this, relief from these symptoms will be welcome!!! Because I don't feel "sick," this ear/dizziness is causing me more distress right now than the cancer diagnosis!


    UPDATE: I can't find any demonstrations of this technique -- I just want to make sure I'm doing it right. Do you have any good links?

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited August 2018

    Well, that sounds pretty miserable. Hopefully, its unrelated to the BC. I have a history of chronic vertigo, unknown cause. It got markedly worse after my diagnosis, for some reason. Probably coincidence. My ENT did a series of Epley maneuvers with my head at three separate appointments, but it finally took care of the worst of it. I still get dizziness from time to time. But its much more manageable. We don't know why it happens or what triggers it for me but we were able to rule out brain tumor.

    Best of luck to you.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    For pressure relief, try folding a washcloth into 3rds, run it under hot water (as hot as you can get from the tap), roll it up and place it in a coffee mug pushing it down so there’s at least an I ch between top of washcloth and top of mug. Place mug with hot washcloth inside over the affected ear and hold in place for 10-15 minutes (or as long as you can). I found that sitting at the table resting my elbow on it while my hand holds the mug and tilting my head so the affected ear is pointed downward is the best position so you don’t get tired of holding it. Prior to BC, i had some hearing loss, went to audiologist was told permanent, no definitive cause. Lived with it for months. Then had a cold with ear pressure, friend told me about this trick with the mug, did it 3 times a day for 2 days and when it was all over not only did the pressure go away but the hearing was restored. There is hope.Hoping it works for you and you feel better soon!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2018

    I experienced some dizziness last fall that I applied the 3 week test to - it didn’t last beyond almost exactly the three week point and was fairly mild, more like being unbalanced, not vertigo kind of dizzy. About 60 days later I had sudden hearing loss. Like, overnight. Turns out I had Sudden Sensorineural Hearing Loss which is caused by a latent virus in the chicken pox and shingles family. This can happen to anyone who has had chicken pox, and the dizziness incident was the start of the problem. This is something that can sometimes be successfully reversed with big doses of both anti-virals and steroids, but this has to be started ASAP. It was not successful for me and I now have permanent one-sided loss to all human voice, and have one hearing aid. I would get this checked as quickly as you can. I was able to get a pretty rapid head scan due to breast cancer history to rule out brain mets, which was a relief.

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Thanks, everyone! I will try the hot washcloth -- it sounds like it will feel nice, either way!

    SpecialK -- I have an ENT appointment tomorrow. I was actually wondering about oral herpes and chickenpox, so I will definitely ask about those as well. Maybe a nice round of acyclovir will help! :)

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited August 2018

    I don't know of a video for that position. Sorry!See if watching these will help.

    https://m.youtube.com/playlist?list=PL3R1sIQwcvVdQ...


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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Just wanted to give an update -- I saw the ENT today. He ordered a ton of bloodwork, gave me a prescription for 3 weeks of prednisone, and ordered an MRI of the internal auditory canal, which is scheduled for Thursday this week. I expressed my fear that I have breast cancer in my ear, and he reassured me that what caused this is most likely viral. In the meantime, I've modified Lula's washcloth trick with just a sock full of dry rice heated in the microwave (makes like a beanbag that stays warm for a long time) -- it is certainly helping relieve some of the pressure! Feels quite nice... :) I have a repeat audiology exam in 3 weeks.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2018

    twinklecat - did the ENT also prescribe an anti-viral, like Valacyclovir? Unlikely to be a breast cancer related situation - but I totally get that fear, but there is also the possibility of an acoustic neuroma so I am glad they are taking a close look at the canal with MRI.

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Hi SpecialK -- he didn't. But I do have an existing prescription for acyclovir (valacyclovir is not on the formulary for Kaiser, unfortunately!) -- I'll e-mail him and ask what he thinks. Thanks!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    Twinkle, good luck. Let us know what they find. I may need to get another sinus MRI. I just had a root canal done. I apparently have an infection don't know how extensive it is, always have that one ear ringing.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    Twinkle-so glad it’s helping! I’ll have to try the rice in a sock. Part of the washcloth trick though is the moisture that goes with the heat. Wonder if you could wet the sock or the rice?

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited August 2018

    I have vertigo due to an inner ear issue (Meniere's disease). Usually, I'm just fine, but when I'm stressed it acts up.  I find that keeping from turning my head this way and that gets rid of it quickly.  In a meeting, I try to sit at one end of the group so I'm not looking both left and right.  If I have to turn to someone, I try to turn my entire body (shoulders if sitting) rather than just my head.  In conversation, I limit nodding my head in agreement.  Have you any idea how much we nod?  Very difficult to avoid!  

    Your issue may be due to an entirely different function (most likely that durned virus), but perhaps you might find head movement is a factor for you as well.

    Oh, and you probably already know this,  but limiting salt is helpful too.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Hi TwinkleCat. Sounds like you're doing all the right things. You might search for the "tinnitus...and other weird symptoms" thread, where those of us with tinnitus and other ear issues are posting. The MRI is a good idea and after seeing two ENTs and other specialists, I can tell you that the odds of it being cancer are pretty remote.

    Wishing you the best.

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Thanks everyone! Y'all are making me feel so much more relieved! I will definitely keep you posted.

    Lula -- I'll try wetting the sock! That's a great idea!

    Brookside -- they have already ruled out Meniere's for me, based on the pattern and type of hearing loss, which is consistent with sensorineural. They're looking at possible inflammatory/autoimmune causes (I also have Crohns, so this is certainly a possibility), and of course, the MRI to rule out a tumor -- but he thought my symptoms were inconsistent with a tumor. Holding out hope for a virus!

    (Isn't this a crazy reality we're all in? Whoever thought I'd be hoping to hear I had a viral infection in my inner ear???)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2018

    twinklecat- yes, I too was “happy" I was just deaf and didn't have brain mets, alternate reality describes this well! I do want to caution you though - speed with the steroid and anti-viral combo is key if this is a virus related SSHL situation. The meds did not work for me and I am permanently deaf to human voice sound levels on my left side. Medical insurance doesn't cover hearing aids even if the deafness is caused by illness - which is a bummer, and they are wicked expensive. I am still getting used to wearing mine, but it has helped, I was really struggling in situations with lots of ambient noise - restaurants, shopping malls, etc.

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited August 2018

    I'm glad they ruled out Meniere's for you, which, by the way, does not necessarily generate hearing loss.   I am lucky in that I have none, and my father, who also had Meniere's, at 93 could hear a pin drip.  

    To the generic anti-vertigo suggestions I mentioned above, I'd add that making sure to stay well-hydrated can be helpful in reducing that feeling of pressure in the ear.

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    UPDATE: My ENT OKed taking acyclovir. He said the evidence is mixed, but that it certainly won't hurt, and that given my medical history with HSV, VZV, and EBV, it may help.

    And I'm feeling MUCH BETTER since starting the steroids! No more tinnitus, no more dizziness -- there is still some pressure in my ear, but it's less. I've also noticed that my affected breast is less swollen, which is definitely a bonus!

    Anyway -- my MRI is this morning. Wish me luck! (I also have my ultrasound for my other breast this afternoon...)

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  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    TwinkleCat- 🍀🍀

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    OMG. I am about to lose it! I just got the call from the medical oncologist with the results from my PET scan yesterday and the MRI this morning. I have bone mets (right upper arm, left clavicle, left lower back and hip) and a very small brain met that is responsible for the dizziness and hearing loss in my left ear. For real. If it weren't so awful, it would be funny. I am going to need radiation for the brain met, and chemo for the rest.

    I am so overwhelmed right now!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    Twinkle, no I am so sorry. Chemo for the bone mets, do you know what kind yet? My coworker only had radiation for the bone met in her hip. Maybe because the mets are in all these different areas. Praying for you.

    Meanwhile my ear ringing in right ear and sinus problems on right side show infection. Antibiotics not helping, my root canal was a success but I have more going on.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    Twinkle, I was just reading about treatments of bone mets with radiation it is used if the is one or two spots. I wonder if ibrance with AI drug would help.

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Thanks, Meow -- and sorry about your ongoing sinus probs! I am supposed to get a call tomorrow to schedule appointments with the medical and radiation oncologists for sometime next week. I'll know more then!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    ok take care, hope these get taken care of ASAP.

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited August 2018

    So sorry, Twinkle.  I sure hope rads clobbers that tiny brain bugger and its symptoms in just about no time, and that your bone mets absolutely cower before the oncoming chemo.  

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Oh I am so sorry. Keep us posted and we'll certainly be thinking good thoughts for you.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    Oh goodness, Twinkle! I’m sorry the results were not what we hoped for. I am glad they figured it out though and they have a plan. Let us know what you need supportwise. We’re here for you. (((Hugs)))

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited August 2018

    Thank you! This forum has been such a tremendous help! It has been such a relief to be able to vent to people who are going through the same stuff!

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  • jrow7
    jrow7 Member Posts: 48
    edited August 2018

    TwinkleCat,

    You are in my prayers....

    I've stumbled onto your post because I have been having a weird pain near my left ear for a few weeks now and some increased difficulty with vision/headaches/dizziness/nausea for a couple months. I have my first Follow up with my Onc on the 15th (finished Herceptin in May). And I've been trying to talk myself down from being fearful. I keep wanting to send them a message through the patient portal but then I feel like I'm just being over-reactive and I will see her in less than a weeks time.

    So I jumped on here to see if anyone else has experienced the same mysterious sxs....ergo, I read your post.

    I truly wish you all the best and if you feel up to it, let us know how you are doing <3

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    I finally decided to call my oncologist, it pretty freightening. Like Twinkle said they reassured her it was probably a viral thing. It is such a horrible thing to get the call. But Twinkle in the long run it is better you found it now rather than a year from now. Sounds like the brain met is small, hopefully they can knock it out and you will be done with that part. I am getting a little braver. You guys are facing it so can I.

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