Meet others living with Head & Neck Cancer: Introduce yourself

@cpaulestep Dear Paul, You don't say anything about the background of this definitely unexpected cancer. Did they ever give you any ideas about why this happened? With prayers, J

I really had no explanation. For the past four or five years prior to diagnosis I occasionally enjoyed a hand rolled Cuban cigar, but I can’t imagine that was enough to cause cancer. I saw a dentist early on who thought it was lichen planas, and I’ve often wondered if maybe he was right and that turned to cancer. He also suggested maybe I was chewing on my cheek at night because of stress. Again, maybe he was right and that wound turned to cancer. I guess I’ll never know, but one oncologist told me it wasn’t uncommon for folks to contract a cancer that there was no reason for them to have, and I was just one of those who drew the short straw. I just want rid of it!

@cpaulestep Cancer can be very much random. I had lichen planus, however, that over many years turned to cancer or maybe was cancer much earlier than was recognised. They do say that long term irritation (over decades) can cause it but as you say, you just want it gone. I wish you well in your search for further treatment.

@maryz, welcome to Connect. It must be so frustrating to not find providers knowledgeable about erosive lichen planus. In addition to the advice offered by @skoshi, I wanted to let you know about these active discussions on the topic in the Autoimmune Diseases group. Hopefully you find additional information and recommendations there. I also hope @loli will add her thoughts and experiences with lichen planus.

> Groups > Autoimmune Diseases
> Erosive oral lichen planus https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
> Vaginal pain Lichen Planus https://connect.mayoclinic.org/discussion/vaginal-pain-lichen-planus/
> Lichen planus https://connect.mayoclinic.org/discussion/lichen-planus-2da636/

Hello, my name is Lisa, and I have salivary gland cancer-- adenoid cystic carcinoma. January 2016 I had a partial maxillectomy with a free flap and temporary trach. Radiation followed after I had healed a few weeks. Thankfully my dentist was able to make me up an amazing partial denture to fill up the hole left by taking half of my hard and soft palate along with my right jaw bone and teeth. I have my 3 year recheck this week, and the stress is real. But the world keeps on turning!! I am thankful for my 2 little boys that keep me running and keep my mind (usually) occupied on normal life stuff. So far no recurrences or metastasis. I am both optimistic and realistic. One thing my docs said I can do is to get into the best shape of my life to help fight when it comes back. Which it will. Is what I am told. Luckily I have always loved sports and working out!

I am new to Connect here, but looking forward to possibly meeting someone with similar stuff to mine. I am still figuring out how to deal with crazy dry mouth after losing a lot of minor salivary glands and then the radiation. Also sinus stuff, ear issues on and off, and dry eye. Mostly on the surgery/radiation side. I actually think mouths and all inner connected stuff is kind of gross. Kind of ironic that I have docs looking at all of that so much now??

Hi @thelisamarie, you are certainly not alone in having to figure out how to deal with the dry mouth stuff after surgery and radiation for adenoid cystic carcinoma. You might be interested in some of these discussions on Connect:

Saliva and dry mouth https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth/
Teeth and Head & Neck Cancer https://connect.mayoclinic.org/discussion/teeth-1/

I'm also tagging @sylviapf @catlyn @loli @sepdvm @dakotapat @hoppy and @alpaca to bring them into the discussion.
LisaMarie, I like that you describe yourself as both an optimist and realist - good combination. What sports and physical activity do you like doing the most?

Hi, I'm Karen. Diagnosed with SCC of the mouth in January '19, surgery in February '19, finished 6 weeks of proton therapy on 5/17/19. I'm wondering what to expect as far as pain and discomfort post proton. I was told to expect 2 weeks before healing would begin, but will I be in pain for that entire period? I'm really hurting now and trying not to overdo the pain meds, Proton therapy was the hardest thing I've ever had to endure and I hoped there would be some relief when it was over, but so far.......none. What have others experienced?
And, though I complain, I am eternally grateful to Mayo Clinic and everyone there.

@karenjf I haven't had proton therapy but "ordinary" radiotherapy for SCC of the mouth. I think the side effects would be similar. The effects are ghastly with internal and external "burning" and difficulty eating. I just think you need to take the appropriate pain meds. They are not addictive if you need them. They're not harmful for a short period and it's bad for you to be in pain. You need to take the meds regularly so you don't get break through pain.
I was told two weeks too but I started to feel better before that - maybe because my radiotherapy was more limited than some. It was maybe 10 days before I noticed an improvement and after a short while I could stop the meds. Everyone is different though!
Please talk to you team about your pain and how to manage it. Wishing you well!

Hey @karenjf, it's been almost 10 days since your last proton therapy treatment. How are you feeling? Has the pain subsided?

I'm still burning and itching and changing out dressing 4 times a day, but the intensity has subsided. Still doing the pain meds on a regular basis. Sleeping better, though.......................So we're getting there! Thanks for asking.................