Meet others living with Head & Neck Cancer: Introduce yourself

Hello everyone. I am Maureen, a New Zealander. I've had head and neck cancer since 2007. A small tongue lesion the first time and then recurrences in 2009 and 2014. The last two have necessitated reconstruction so i have a free flap for half my tongue and a small part of my inner cheek. Both these were on the same side so I had radiotherapy in 2014 to try to stop it recurring. The last surgery left me with a scarred chin and severed facial nerve which means I can dribble saliva (and food) out of my left lip if I'm not careful.
My cancer was a result of long term oral lichen planus, a usually harmless condition that can turn to cancer in rare cases.
My life with cancer has been eased my active participation on online forums. I help run a Facebook group in NZ and used to be actively involved in the Oral Cancer Foundation in the US. Helping others has helped me more than anything else has!

Hello, I just had a sore throat that didn’t get better after two courses of antibiotics. Then went to ENT doctor and was told had tonsil cancer. This was in Georgia came down to Mayo Clinic for biopsy , ct scan and pet scan. I noticed swollen lymph node and had sore throat. I have no other pain. No bone pain. I am 69 and otherwise healthy and active. It is HPV +16. The clinical trial is immunotherapy. I guess my question was is anyone else with stage 4 tonsil cancer and how are there treatments going.
Thank you for your reply.

Hi @handyman69 and welcome. Stage 4 tonsil cancer? Fine one day and the next not so much or were the symptoms being ignored until they could no longer be ignored? I don't mean to sound harsh but there has to be more to this story. Do you have a question or something to share about this clinical trial? I would imagine it is going to be strong Chemo for quite some time as by stage four, it has metastasized to the point where surgery and radiation would be everywhere and not feasible. Hopefully there has been an analysis of the type such as HPV16+ which can significantly change the type of Chemo required. Good luck and good healing.

My husband has been diagnosed with stage 4 tonsil cancer. He has metastasis to lymph nodes and bones. Surgery is out and radiation is out. He is going to start a clinical trial in a couple of weeks.

Please get a second opinion. I had cancer SCC of maxillary sinus. Surgery was the only option. ( maxillectomy) ) Followed then by radiation. No chemo. Tumor size 2 with no metastasize ( initially) This was almost 4 years ago. Radiation was a fail because the cancer recurred in a couple of lymph nodes in the neck. Long term side effects from radiation continue to be challenging.

I have been diagnosed with squamous cell carcinoma in my maxillary sinus. Can you please connect me with others or advice
Thank you

William, thank you for the welcome. I began part of my story in 2002, when my dentist noticed “something” . Well after a biopsy they discovered cancer. Never smoked a day in my life, but there it was, second hand smoke cancer. After removing most of my left jawbone, I was considered “cancer free.” Yea, right! Went to my dentist, oncologist, and oral surgeon every two months or so, regularly. Thru the years they removed many suspicious spots. Twenty years later, my oral surgeon, on word from oncologist, did another biopsy on my right side. Did not show any signs of cancer. However my surgeon notice the left side of my cheek to be suspicious and did a biopsy. Stage IVa soft tissue cancer, fast moving new type of cancer. My surgeon, referred me to a younger surgeon, new oncologist, new plan. My doctors said I need newer, younger, specialist. Well, I got them. Lucky enough to live close enough to the Sammons Cancer in Dallas. Am going there now. Have had surgery, 32 rounds of radiation (horrible), and over 50 chemos. While under going radiation and chemo, the cancer come back in my head. They had warned us it could. My Oncologist began chemo, chemo and Key Truda. Key Truda was every third week. Now present day, I told my doctor I wanted to stop my chemo. He said after two clear scans I could and continue with Key Truda every 3 weeks. He said they didn’t know if it was the chemo or Key Truda that said bye to cancer. So right now, I’ve had my first scan since being off. Chemo and it still “cancer free”. I will continue as is until…. Just glad to finally find people like me. Fighting to live.