Meet others living with Head & Neck Cancer: Introduce yourself

@goldfinch, you may also wish to join this discussion related to SCC on the scalp.
- Squamous cell carcinoma of the scalp (skin)
https://connect.mayoclinic.org/discussion/squamous-cell-carcinoma/

Hi. I am Joan @731. I had Adenoid Cystic Carcinoma ACC is the sublingual salivary gland with NOTHC1 mutation so it is very aggressive and rare form with “poor” prognosis and recurrence or metastasis usually within 3-13 months. My surgery was 19 months ago at MD Anderson. My doctors did not recommend chemo since research indicates it has little to no effect on ACC. I also declined radiation since as they explained radiation has < 10% chance of helping and 100% chance of damaging healthy tissue and life log side effects. I do have extensive nerve damage from nerves being cut during surgery leaving me with constant nerve pain especially in my tongue. Tongue and floor of mouth have been reconstructed with tissue taken from my leg. Free flap is very large pushing my tongue up and back to completely fill my mouth making eating difficult to impossible. Initially I had NG tube for feeding but when that was removed I was not able to eat and only drank about 8 oz. of thickened liquids a day. My weight dropped to 77 lbs. a PEG tube was placed but instead of healing it became so painful it had to be removed and I was left trying to find a way not to starve on my own until I was able to find a doctor and dietician who suggested Kate Farm Sole Source nutrition drinks and gained 22 lbs. I have just recently found a physical therapist and a speech therapist who specialize in head and neck cancer and are helping a lot. I have even begun trials of solid foods. This makes me very happy. Not being able to participate in meals with family and friends is a big social loss.
My currently dilemma is that with constant pain, evidence of “spots” on my lung basically ignored by my oncologist as probably nothing and the research that indicates recurrence and metastasis in < 13 months and an overall mean survival rate of 30 months with ACC NOTCH1 as compared to 122 months with regular ACC my oncologist does not order scans and only brief check up appointment once a year in spite of symptoms including a growing palpable lump in my throat/neck. I can’t find a doctor with experience with ACC in my area (within 380 miles) and I can’t afford to return to MDA or other distant location. I’m just reaching out to see if there is any hope for help if I can get to Mayo.

Hello @goldfinch and welcome to the Head and Neck group. You seem faced with a unique dilemma as most of us have had radiation everywhere but the top of our heads. I'm not a doctor, only a patient but if it were me, I would agree to radiation on the top of the noodle only and I mean only if it was Proton beam. If the doctor concludes that it would be photon beam then I would simply say "you first".
Thit Proton they can pinpoint a slice and keep it out of the gray matter. They can't do that with Photon. I think all of us who have had Photon radiation have had some cognitive issue of some sort. We of course don't know what we don't know but I for one lost memories, math formulas, ability to remember some foreign languages, etc. Don't mess with the noodle. But that's just my opinion.
There are now drug options such as Keytruda to keep SCC at bay if it is of a certain common subgroup. You could ask about that option.
Let's see who else chimes in here. When was this surgery?

Yep, I would definitely start asking the oncologist about chemotherapy options - from some quick reading, it appears that many SCC tumors have an excess of EGFR protein and there's a drug which targets this.

Below I'm linking a related research study to share with your oncologist. Note that the patients were in a much worse situation than you are. They couldn't have surgery to remove the SCC tumor and relied on the chemo alone - and a third of them were immunocompromised. You just need to keep any remaining cells from regrowing.

Thanks so much for your much needed info. I need to find best place for a qualified second opinion near me. I tried another dermatologist, but it turns out his group uses the same Mohs surgeon! waste of time. I live in Rhode Island, no Mayo Clinic near me. A large cancer center that does a lot of squamous cell cancer of the scalp is what I need to find. Hoping for a response from a kindred spirit.

Hello - my name is Robin.
My husband was diagnosed with nasopharyngeal cancer last November 2023. He has completed 3 cycles of chemotherapy at Emory in Atlanta. He just finished his 3rd week of proton radiation so he’s got 4 weeks to go. I know everything is about to be more challenging.
I am here for advice and any support moving forward.
I want to be as prepared and helpful as possible.. We have a lot of friends nearby but feel like I shouldn’t burden them with all the information. It’s a lot and we are trying to figure things out moving forward. Thanks for being here…we appreciate it.

Hello - my name is Robin.
My husband was diagnosed with nasopharyngeal cancer last November 2023. He has completed 3 cycles of chemotherapy at Emory in Atlanta. He just finished his 3rd week of proton radiation so he’s got 4 weeks to go. I know everything is about to be more challenging.
I am here for advice and any support moving forward.
I want to be as prepared and helpful as possible.. We have a lot of friends nearby but feel like I shouldn’t burden them with all the information. It’s a lot and we are trying to figure things out moving forward. Thanks for being here…we appreciate it.

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don't forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.