Meet others living with Head & Neck Cancer: Introduce yourself

Hi everyone,
I just finished all my imaging ie pet/ct/mri. I need to get flap surgery for maxillary sinus/cheek tissues/ upper hard palate. Msk is recommending chemo and immunotherapy trial first then surgery. Has anyone done induction chemo first. Did it help? Thanks I am trying to make decision so greatly appreciated.
Kathy

I have maxillary squamous cell carcinoma, not hpv related. It is 4a. They are recommending clinical trial of chemo and immuno drug then surgery. Scared

Hi @kathyheidt Maxillary SSC is not as common yet there are others here who have gone through your journey. Perhaps they will pop in soon. This is not going to be an easy battle, not impossible either. Pretty much your next six months will remove you from the plans you may have made. The good news is SSC is treatable. I'm here twenty-two years later.
Are you going to a major hospital or clinic with experience in head cancer? Make sure your oncologist has head experience otherwise don't feel obligated. It is your wellbeing, not the doctor's we need to think about.

Thank you so much for replying. I am grateful. Sloane Kettering mskcc in nyc has recommended chemo for three months then surgery since it is stage 4a (luckily not in lymph). I hope it is curable. I am so happy to hear on your success and appreciate your advice

I recently had a SCC tumor removed from the top of my head. It was originally diagnosed as seborrheic keratosis and treated with topical cortisone. Two years later it became quite painful, raised, and about the size of a quarter. I had Mohs surgery with clean margins and genetic testing resulting in a 2 or intermediate threat of a return. My surgeon is recommending adjunctive radiation and I'm reluctant. I'd like to hear from others like you about your experience.

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?

Thanks so much for the info. The surgery was in November, however the radiation was not recommended until January, after the genetic lab tests came back. Rick factor 2 or intermediate. Since then I've had a scan done to look at my lymph nodes (negative). I'm told I will need another in 3 months since I opted out of the radiation. Seem strange to me that all the lab tests come back clean yet I'm still advised for adjunctive radiation. I 'm finally getting a second opinion next week.

Hello @goldfinch. I have skin origin SCC but from my ear canal. I just had my 96 year old aunt to the dermatologist for a longstanding lesion on her scalp. It was a superficial SCC and Mohs is scheduled. The success rate for Mohs given to us was 97% for curative so that seems pretty good. I am surprised at your recommendation for radiation with only an intermediate risk factor for recurrence. I certainly agree with @hrhwilliam on this as far as radiation and brain damage. I had photon (traditional) radiation 12 years ago and was warned that I would have short term memory loss as a result, but my surgical margins were not clean so I had no choice. Now it is hard to know if my memory loss is age or radiation! In your case you have made an educated decision, which is the best method of advocating for your own health care. A second opinion is a perfect idea. I highly recommend Dr. Katharine Price at the Mayo Clinic Rochester, my head and neck oncologist, if you end up looking for a third opinion. The monitoring is stressful but it is the best way to catch things early. Please share with us your thoughts after the visit next week.

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.

@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/