Meet others living with Head & Neck Cancer: Introduce yourself

Hi Everyone,
My name is Bobbielynn from Sunny California. A wonderful 59 year old I 've had Head and neck cancer since 2008. Thought it was a canker sore on my tongue but turned out to be cancer. Recurrence on the day of my five year anniversay I had surgery, radiotherapy, and chemotherapy both times. i have a flap sewn to the bottom of my mouth and a huge scar from the graft on my right arm. I say its a cancer awareness tattoo. I had to learn to speak and eat again however the side effects are the ones hitting me now. My speech and eating was affected but i have adjusted and actually doing well. I had to rethink how I was going to see this as a problem or an adventure (mindfulness) Its been an adventure learning to puree foods to chew hits and misses there. I found out I will be losing my teeth from the radiontherapy bummed sounds swallow but it bothers me.
Hoping healing no pain would be nice, and thinking okay going to have to practice a different smile hmm maybe an Olsen twin smirk. LOL

Anyone have any helpful tips for puree foods or experice tooth loss after treatments?

Hello, Bobbielynn. My case is similar to yours with a recurrence after 4 years and dental problems. I have a few teeth left, enough to hang a partial metal denture on. I smile for the camera every time because I don't know how long those teeth are going to last. I have a severed facial nerve which oddly allows me to smile but gives me a very twisted resting face.
I had an ulcer on my tongue for a long time that turned out to be cancer.
Pureed foods. Hmm. I had oatmeal and yoghurt for breakfast. I eat soups with toast soaked in them. I can eat very soft food with lots of gravy.
I don't have any pain but a very uncomfortable mouth at times. I try to keep fit.
Welcome!

Hi..Jan here from Jacksonville, FL. You are a tough one. Congrats,on your great attitude. My best to you and hope each day you feel a littlle better. Chat anytime.

To the great people in this group. Stay strong!!!!!!!

@nanab1219 Dealing with tooth loss after cancer treatments would be a great topic for a new discussion. Here's how:

1. Go to the H&N Cancer group homepage here: https://connect.mayoclinic.org/group/head-neck-cancer/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Coping with tooth loss after cancer treatments”
4. Write your message.
5. Click CREATE DISCUSSION

Hi Bobbielynn,
I also belong to the tattoo club! Today was my almost five year checkup. Dr Strome was very happy to see me doing so well. I feel well, and I am so glad to see how positive you are about this adventure we have been presented with. I have lost four of my molars, due to radiation. All on the same side, two from the top and two from the bottom. My gums receded in such a way, that the roots were very exposed and infections were festering deep inside. Otherwise, the rest of my denture is healthy. I go for cleaning every three months. I use water pick, brushing and little brushes to clean between the teeth. I am fastidious about cleaning my mouth, and if you are suffering from lack of saliva, as many of us are, you know how everything sticks to your teeth; so cleaning is essential.
I love avocados. If you mash them, you have guacamole. I lived on avocados and cuddled eggs when at my worst. I have been juicing for five years now. Lately, I have been adding collagen to my juices. It helps in the healing process.What about refried beens? You can make them as dry or as runny as you wish.

Good Morning,

My name is Stephanie and I live in Sacramento, California. I was diagnosed with Adenoid Cystic Carcinoma after a sinus surgery in February 2018. I have no symptoms and no idea that I had anything other than allergies and a blocked sinus cavity. During surgery the surgeon noticed the tumor. I have had one consultation with UCSF and am looking for another option.

Hello, Stephanie. This is a rare cancer. In my New Zealand head and neck group there are only four with ACC - only 6 in the whole of NZ. It's often an "indolent", slow growing cancer but still troublesome.
You are in the right country for cutting edge treatments.
There's an international support group based in the US for this cancer. If you need another patient to talk to, the chairperson of our NZ group is 4 years down the track after having an ACC tumour removed from her adenoid.
I wish you well, Stephanie, and hope you get a good treatment plan locked in soon.

Hi Stephanie, along with Maureen, I'd like to add my welcome and introduce you to fellow Connect members talking about Adenoid Cystic Carcinoma. Please meet @dakotapat and @douger. You'll find them in this discussion in the Head & Neck Cancer group:
-- Adenoid cystic carcinoma - left tongue base https://connect.mayoclinic.org/discussion/adenoid-cystic-carcinoma-left-tongue-base/

If you would like to seek a second consultation at Mayo Clinic, here is the contact information for all 3 campuses in AZ, FL and MN mayocl.in/1mtmR63

Hello Stephanie. I know the shock state you are in and sympathize. I want to recommend Mayo as a great choice for another opinion. I had Squamous Cell Carcinoma but in a very rare location near my middle ear and that drew me to look around for opinions. U. Michigan was close, but it turned out a 10 hour drive to Rochester, MN allowed me to experience the Mayo system and meet with an amazing team of doctors. I had surgery and have done all followup at Mayo and so glad that was my choice. I had chemo and radiation at UM because it is only 1 hour from home and the Mayo doctors highly recommended the head and neck radiation oncologist there. That saved me from living in Rochester for 7 weeks during treatment. Good luck to you and don't let distance distract you from where you seek another opinion.