Cancer of the Ear Canal

michela_j_

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.

eDivebuddy

’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.

michela_j_

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.

eDivebuddy

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.