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!

Nice to meet everyone...receiving support from a therapist right after my diagnosis was the best thing I did to help with the stress and anxiety before my two surgeries and treatments. Also seeing an integrative doctor at the hospital to help with my diet was a life saver. my academic medical center had all these added support services at the hospital. the only missing piece was not getting connected to a peer mentor after asking my doctors to connect me to someone from the community who was a survivor.

Hi Kathy, I'd like to add my welcome. Here is a list of discussions where members are talking about sinus cancer:
https://connect.mayoclinic.org/group/head-neck-cancer/?search=sinus&index=discussions
Click the link and post a comment in any relevant discussion to connect with others like you. 🙂

I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9 centimeter size on the back of the tongue that was inoperable due to being too close to my breathing tube. I had 33 radiation treatments and 6 chemo treatments. I am 6 months in recovery and definitely getting stronger. My recent pet scan showed no suspicious activity anywhere which was a relief. I just received my first PT treatment for lymphedema. I have lymphatic drainage towards the front of neck. My physical therapist is suggesting I order a machine that will help with drainage along with exercises. Does anyone use one of these? I’m not sure if it’s necessary and whether it is covered by insurance. Thank you for this open forum. It really is so beneficial to so many of us.

Mine started out as lichen planus as well. I’ve had 6 surgeries and will soon be having my 7th. It was on my tongue, now it’s in the floor of my mouth. I wish I knew what to expect.

@becsubur, I'm sorry to hear that you have to undergo yet another surgery. I'm tagging @alpaca to ensure she saw your message. When are you scheduled for surgery?

I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9 centimeter size on the back of the tongue that was inoperable due to being too close to my breathing tube. I had 33 radiation treatments and 6 chemo treatments. I am 6 months in recovery and definitely getting stronger. My recent pet scan showed no suspicious activity anywhere which was a relief. I just received my first PT treatment for lymphedema. I have lymphatic drainage towards the front of neck. My physical therapist is suggesting I order a machine that will help with drainage along with exercises. Does anyone use one of these? I’m not sure if it’s necessary and whether it is covered by insurance. Thank you for this open forum. It really is so beneficial to so many of us.

I had more tests ie pet, ct, mri.. cancer not spread in lymph or orbits but in bone and cheek tissues and inferior antrum. After reading so many comments and hearing cancer came back within two years, was flap maxillectomy worth it? Or better to do just radiation and chemo. All cases unique but low stage 4a