Meet others living with Head & Neck Cancer: Introduce yourself

Hello, I'm Terri, 67 years. My tumor biopsy shows I have metastasized Squamous Cell Carcenoma. Tumor was in my head and skull bone. I meet with an Oncologist on 5/11/23 for the first time. Site of origin unknown at this time. My tongue is sore on side. I'm scared and cry all the time. I live alone which doesn't help. I'm afraid that it's spread to other areas. If there's someone who has or is going thru this I would appreciate any thoughts you may have.

I've been diagnosed with metastasized Squamous Cell Carcenoma . I had a mass/tumor removed from top left side of head. I meet with an Oncologist on 5/11. As of now site of origin is unknown . I've read that once the cancer has metastasized that prognosis is poor . Anyone with this type of cancer? I've read the Squamous Cell Carcenoma rarely spreads/metastasized.

Hello trte300. It’s very normal to be afraid of the unknown. Squamous cell carcinoma is treatable and depending upon your oncologist recommendations, your chances are usually pretty good at winning this fight. You first have to take it one step at a time and don’t jump to conclusions.
I won’t tell you it will be easy, it’s not. But the alternative is worse. So with your good doctors and the people on this site to talk with, it can go easier. There are many here who have been through what is happening to you.
Let’s start with the questions, what is your next step? What does your medical team say?

Thank you! I have my first appt with an Oncologist this week on Thursday. You're right, I do need take one step at a time . I have my first appt with oncologist this Thursday.

Sorry about repeating myself.

Hey, Tom here - just joined this morning. Happy to find what seems to be an appropriate group to discuss with. Background is as a scientist, these days I'm effectively project sponsor on a couple dozen research projects. Nothing to do with medicine.

In 2007 I was diagnosed with an ameloblastoma - a rare, "benign but locally aggressive tumor" in my left mandible (jawbone). It's probably back, I'm waiting on a biopsy to confirm.

Having an ameloblastoma feels like being orphaned. It's not just that the tumor is rare, it's being told "It's not cancer" and not getting the option of trying an oncology based approach. From a layman's perspective that just seems too limited. It's a tumor. Growing in and progressively destroying my bone. Small studies have shown excellent response to a drug/inhibitor approach.

Hi Tom and welcome. You raise a valid point in that- how can a tumor not be considered cancer. After all, it is an abnormal growth. Because it does not metastasize? There are other cancers which seldom metastasize as well.
I digress. You will find others right here to converse with including a young lady of I believe eighteen in your situation but for the first and hopefully only time. She will have surgery next month and is rather understandably apprehensive. I myself had squamous cell carcinoma which resulted years later in a rebuild of my left mandible. So I have experience in that aspect. But give this a few days to simmer and we shall see who dives into the conversation.
Do you have any questions for this group or is there something specific you need? Feel free to ask.

Thanks, William!

Mostly I feel like I need feedback, and I certainly appreciate yours.

I've requested that my oral surgeon get preapproval for a genetic screening of the biopsy - from what I see in the literature, the vast majority of mandibular ameloblastomas have a particular BRAF mutation, V600E. There is already a drug regimen for various cancers with that mutation (Dabrafenib-Trametinib) - and a small trial of 12 people showed 100% success at significantly shrinking ameloblastomas with BRAF V600E. More details in the ameloblastoma discussion thread adjacent to this thread. https://connect.mayoclinic.org/discussion/ameloblastoma/?pg=4#comment-858354

I'm working on getting an oncology referral for a second opinion, requesting somewhere with a research program, cancer expertise and a wide variety of specialists. Since I'm in Texas, first stop is likely MD Anderson.

That said, if I need to go to Minnesota to get the right treatment, that's what will need to happen.

I am new to all of this! Please forgive me for my ignorance. What I thought was a simple melanoma tumor on my temple ( I used to tell my friends I have "baby cancer" but I guess I was wrong) turned out also has moved to lymph node in my neck. Had tumor removed and lymph node as well. Lymph node tested bad. So now it looks like immunotherapy for a year. My Mayo portal looks like my work calendar now for appointments. It is the "unknown" that has my head in a whirlwind. Looking for anyone to chat about similar situations. This is my first post here, so as I said earlier, forgive my ignorance or lack of knowledge. I hate reading articles on Google because that just makes my mind spin more. Anyway, my first post is now complete. Mayo has been amazing and I am trying to do anything and everything that they suggest. Any other input would be greatly appreciated. Thanks in advance....Charles

Hello @crboggs3 Charles, welcome to the Head and Neck Cancer group. Although this is probably the last place anyone would hope to be, nevertheless here we are.
Half the battle is getting good care so at least this part is under control. We often tend to put things off either not wanting to deal with a health issue or hopes that it will just go away. Since that approach doesn’t work well the next step is Dr. Google. Your own research into specific issues relayed from your doctors is wise from reputable sources. We should all learn as much as we can about our situation. Just try to ignore the fluff out there.
I wish you good healing. If you have questions about tests, treatments, side effects or whatever just ask.
Is everything going on schedule? Are you managing life okay with treatments?