Metastatic Squamous Neck Cancer with Occult Primary

@theaceman, welcome. Can you tell me a bit more about your diagnosis? Do you have head and neck cancer that has metastasized to a lymph node? Or squamous cell carcinoma of the skin that has spread to a lymph node?

Where was the original cancer located?

For a few years, I’ve always noticed a small lump in my side of my neck so after few years, we decided maybe just to take it out to have a biopsy. The biopsy came back showing metastasis squamous cell sarcoma inside of it. Right now we don’t know the origin, but we just know that inside that lymph node was that type.

This is what they called the swollen lymph node

metastatic keratinizing squamous cell carcinoma
It was 2.5 cm
We don’t know the origin yet from what I’m aware

Thanks for clarifying, @theaceman
Metastatic squamous cell carcinoma is often referred to as a neck cancer because it tends to travel to the lymph nodes in the neck and around the collarbone.

Metastatic squamous neck cancer with occult primary is a disease in which squamous cell cancer spreads to lymph nodes in the neck and it is not known where the cancer first formed in the body.

Here's more information:
- Metastatic Squamous Neck Cancer with Occult Primary Treatment (PDQ®)–Patient Version https://www.cancer.gov/types/head-and-neck/patient/adult/metastatic-squamous-neck-treatment-pdq

Because you have neck cancer, I moved your discussion to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I did this so you can meet others with a similar diagnosis like @jamirenee72 @sepdvm @jimthomasintl @ltecato @rtibbets @davehutsell and more.

What are next steps for you, @theaceman?

Hello @theaceman and welcome to Connect. Head and neck Cancer is frequently a squamous cell carcinoma and can originate either from skin cells or from mucous membrane like the lining of your mouth, tongue, etc. My SCC is skin origin from my external ear canal deep by the eardrum. After initial surgery to remove it and the bone of the skull that it had invaded ,I was clear for about 18 months. Then a mass appeared in my lung that turned out to be a metastasis, hence now metastatic SCC. I suppose you will have more diagnostics like a PET scan and perhaps MRI or CT looking for the original. It sounds like this was sitting pretty quietly in your lymph node for quite a while. Perhaps it is a slow growing and less aggressive tumor? I have had 3 mets surgically removed, 2 in lung and 1 on a muscle. The last one was in my kidney and the draining lymph nodes were also involved. I was on an immunotherapy drug for just over 2 years and the kidney and lymph nodes are free of tumor currently. I hope you are able to learn more and develop a plan of treatment soon. It is so important to advocate for your own cancer care. Educate yourself and take part in the decision making. Keep in mind that an oncologist who specializes in head and neck cancer might be your best bet. Always consider a second opinion, preferably at a large referral center/teaching hospital to find such a specialist. We drive 10 hours to Mayo Clinic in Rochester, MN for my cancer treatment and have been since 2012 when first diagnosed. The care there is second to none and the head and neck oncologist is wonderful. I will try to answer any questions you may have. Good luck to you. Think positive!

Thank you so much for the response. It certainly gives me a feeling of relief that to know that i can talk to others about their similar experiences. I am getting it set up to have tests done at University of Utah ( Huntsman Cancer Center) . They are know for being really good. This swollen lymph node definitely has been sitting quietly and hiding. Now that I think back, it may have been there for up to 4 years. In hindsight, I also wonder because sometimes I felt sore throats, or my tonsil on that side seems to always be swollen a little, and I wonder about this repetitive clearing of my throat. I've done that for a while and was told it is more likely related to reflux and mental habit of trying to clear. My ENT doctor has check down my throat and nose a few times and always said it looks ok. Anyway, that would, make sense if its all related. During this whole time, i was always feeling ok, but with knowing that the lymph node seemed to get a little bigger, my ENT doctor agreed and decided to remove it and send it to the lab. The lab states that it was 2.5cm in size. Right now, I am not aware of any other skin cancer on me or where it could of came from. If I was to guess, I'm thinking maybe something with my tonsil. I used to smoke for a very long time and drink. But I quit smoking I think maybe 8 years ago at least and drinking about 13 years. Maybe it could be related to smoking or my tonsil. Now that it is removed, I hope they can do a thorough PET and check the rest of me out. Maybe I can be given some less evasive treatments or maybe they wont find a primary source ? I hope and pray that this can be treatable in some way. Thank you again for your response.

It sounds like you have a good plan. My coworker had breast cancer many years ago where enlarged lymph nodes were removed to diagnose but never could find the primary. She had chemo and never looked back. It does sound like your history could predispose you to an oral SCC. My father had that for the same reasons. Keep us updated about your treatment.