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Cancer of the Ear Canal

michela_j_
michela_j_ CSN Member Posts: 5 Member
in Rare and Other Cancers #1

I was recently diagnosed with invasive squamous cell carcinoma of the ear canal. I had an initial surgery to remove the visible tumor and to biopsy it (which led to my diagnosis). The first pathology report was inconclusive so they sent it on to experts for their interpretation, which resulted in a diagnoses of SCC. They are currently recommending a surgery to remove/close off my ear canal, remove part or all of my temporal bone, part or all of my lymph nodes on that side of the neck, plus a parotidectomy. Do any of you have experience with this? It's a rare presentation of cancer so I've been having trouble finding a lot of good resources online and would really love to connect with folks who have gone through this themselves. Gratefully, M.

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Comments

  • eDivebuddy
    eDivebuddy CSN Member Posts: 169 Member
    #2

    ’m really sorry you’re going through this—squamous cell carcinoma of the ear canal is incredibly rare and aggressive, and I can see why you’re having trouble finding others who’ve faced it. You're absolutely not alone in feeling a bit lost at this stage.

    Because it's diagnosed in less than 1 in a million people each year, there really aren’t many true “experts” in this cancer. But what does exist are hospitals with experience—especially large academic cancer centers and NCI-designated institutions that handle rare and complex head and neck or skull base tumors. Even if they don’t specialize in this exact subtype, they may have managed similar cases and have the surgical, radiologic, and reconstructive expertise needed.

    Given the complexity of what they’re proposing—removing or sealing off the ear canal, part of the temporal bone, lymph nodes, and parotid—it’s perfectly reasonable to seek a second opinion at a high-volume center. Places like MD Anderson, Memorial Sloan Kettering, UCSF, Mayo Clinic, Cleveland Clinic, and Stanford all have strong skull base programs.

    You might also want to ask about proton therapy. For certain cases where the tumor hasn't gone too deep, proton therapy can offer highly targeted treatment with less risk to the brain, facial nerve, and other nearby structures. It's not always appropriate, but in the right situation, it could potentially reduce the need for radical surgery—or be used post-op to sterilize margins while minimizing collateral damage.

    If you’re willing to share your region, I or others might be able to suggest a nearby center with experience. In the meantime, keep asking questions, and know that we're all rooting for you. You’re not alone in this. We may be in different lanes but the crappy road is the same.

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  • michela_j_
    michela_j_ CSN Member Posts: 5 Member
    #3

    Thanks eDivebuddy. I’m getting an opinion on something from Sloan Kettering and I have a care team at another major high volume hospital that seems to be really great and knowledgeable so far. As for proton therapy, I had an appointment with a radiology oncologist the other day and it looks like my surgery will likely be followed by proton-photon therapy, which I also don’t know much about but for which there seems to be more info available online. Thanks for the reply, I appreciate knowing that, while there may not be a lot of people with this specific cancer, I’m in a great community.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 169 Member
    #4

    Keep asked the questions and why is probably my most asked. Sloan has a lot of great doctors but don't let their PR machine get in the way.

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  • pmwaggo
    pmwaggo CSN Member Posts: 3 Member
    #5

    I got diagnosed with this cancer in 2024, had a twelve hour surgery, and six weeks radiation. I had a Petscan in December and showed no evidence of disease🙏 one year later I do have side effects from all I’ve been through, ear pain and tightness on left side of face and neck area, nerve pain, scar tissue pain, but all and all feel really well.

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  • smarr
    smarr CSN Member Posts: 3 *
    #6

    I had a LTBR for squamous cell cancer of the ear canal in 2020. I had adjuvant radiation for six weeks after. I am still cancer free just over five years after. I’m happy to discuss and support.

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  • smarr
    smarr CSN Member Posts: 3 *
    #7

    Where did you have your surgery? Mine was at Memorial Sloan Kettering.

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  • Raellen
    Raellen CSN Member Posts: 5 Member
    #8

    Hello, may I ask how you discovered you had this ear cancer? What were the symptoms? Thank you

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  • michela_j_
    michela_j_ CSN Member Posts: 5 Member
    #9

    Hi there. For me, I didn't pick up on some of the earlier signs (bleeding from the ear, for example) because I was so unaware of ear cancers or diseases, so when I saw blood on my q-tip from that ear, I wrote it off as being a scratch in my ear canal that I kept reopening or something. Ultimately, I eventually went to the doctor for what I thought was an ear infection (my ear was especially bothering me because it had started feeling full and kind of popping open and closed), and when they did the exam, they then let me know it was a tumor taking up about 1/2 of my ear canal.

    For everyone it's a little different, though.

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  • pmwaggo
    pmwaggo CSN Member Posts: 3 Member
    #10

    I had my surgery at Kaiser San Diego, and radiation at UC San Diego

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  • pmwaggo
    pmwaggo CSN Member Posts: 3 Member
    #11

    It took a long time for my cancer to get diagnosed, I had what seemed like an ear infection, saw numerous ENT’s, its so rare that most of the ENT’s I saw had never seen it before so they weren’t looking for it.

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  • smarr
    smarr CSN Member Posts: 3 *
    #12
    https://csn.cancer.org/discussion/comment/1726678#Comment_1726678

    Hi. I had swimmers ear infections several times in my life but before my diagnosis I had what felt like a swimmer ear infection that would get better but would never totally go away for 1O months. Treated a several times with antibiotics. I had typical symptoms of an external ear infection—itchiness, pressure, discharge. After antibiotic treatment for an ear infection on my follow up my primary he said there was still a small red spot in my canal I needed to continue to treat with alcohol. That was the cancer. Covid hit right when I decided to to see an ent bc my ear wouldn’t get better so I had to wait a couple months for an in person appt. I saw the ent five times while he tried to treat the “sore” until he biopsied it discovering squamous cell. I don’t have any bad feelings about how this occurred—it’s an extremely rare condition that most primary doctors have never even heard about. I hear it has an incidence of about 1 per million. I had one PA at Urgent Care tell me that my canal looked really strange with yellow flakiness. Later, I read that as a physical description of cancer. Who knew!

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  • Raellen
    Raellen CSN Member Posts: 5 Member
    #13

    Thank you Michael J and Smarr for sharing. I am currently receiving treatment for Anal Cancer, which led me to this forum. I saw your post and was curious because I have been having problems with my right ear for close to a year now. I have no blood or pus coming out of my ear, it just itches a lot and at times feels as if there is something in there, it’s a strange thing. I first brought it up to my PCP and they examined my ear and said they did not see anything going on in there, not even wax build up. I then on my own went to see a ENT, was told the same thing. The problem persisted, I next had my Dermatologist take a look, nothing. Frustrated I went back to my PCP and asked her to check again, the comment this time was I had dry skin in there and was told to put tea oil in my ear. I asked for a antibiotic drop because I was in disbelief, something is going on! That did nothing as well. I then got swallowed up and consumed with the Anal Cancer and continued to cope with it. I was thinking maybe it’s a nerve related thing. Now that my cancer treatments are ending in a few days, I thought I would pursue another ENT and push them to do a scan. It’s so frustrating.
    But yes, this thread caught my interest, so I wanted to ask about symptoms. When they did my PET scan for the Anal Cancer, the scan did not pick up anything. I am sure they did my entire head, as the scan showed enlarged glands in my jaw area, so seems it might would have picked up anything in my ears. Either way, I am going to try once again to find out why this sensation has been hanging around for almost a year. Thank you both again for your reply.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 169 Member
    #14

    Raellen,

    Is this pretreatment? Are you on Immunotherapy? Immunotherapy can cause you immune system to attack any part of your body. I had a similar issue in December. My oncologist prescribed Hydrocortisone and Acetic Acid Otic Solution(steroid ear drops). I took it for about 2 weeks and it went away.

    Good luck to you

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