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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

ruehoudon | @ruehoudon | 3 days ago
In reply to @mojo244 "Hello and sorry about your situation. In the words of my senior oncologist, I had way..." + (show)
@mojo244

Hello and sorry about your situation.
In the words of my senior oncologist, I had way too much cancer for any surgery and I needed to be hit as hard as I could with old school chemo and radiation because he had one chance to kill it or my prognosis would not be good.
With all that said I can only attest for radiation along with chemo.
One thing for certain is that you need a complete oral examination from an oral surgeon. Any teeth that are within the radiation impact area that may be at risk(crowns, filled, decay etc) must be extracted and 21 days of healing prior to any radiation. After radiation treatment you will need Hyperbaric Oxygen treatments for 30 days prior to a tooth extraction or filling and 30 days after…. I had my wisdom teeth and 3 molars extracted prior to radiation!
As far as radiation, everyone can respond differently so it’s hard to say how it will affect you. All we can say is what it did to us.
As for me, chronic migraine 24/7, tight neck, tight jaw, dry mouth, difficulty swallowing food and sometimes liquid, cough, hearing loss and tinnitus (most likely from Cisplatin), speech impairment, fluoride treatments/prescription toothpaste and more.

Wishing you the best,
MOJO

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Thank you for your kind and thorough reply. Sounds as if you've gone through very difficult treatment; I'm sorry for that and hope you are on the other side of most of it. I am not having chemo and my radiation oncologist tells me that my mouth isn't implicated in the upcoming treaatment. But I've asked for triple confirmation of this as I've no wish to suffer any further gum or mouth side effects (mine are mild, but as a result of two rounds of radioacive iodine treatment) at this stage of my life. Wishing you a smooth journey. P

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Mentor
Sue, Volunteer Mentor | @sepdvm | 2 days ago

Hello @ruehoudon. I had radiation plus a targeted therapy but aimed at my ear not throat so I missed a lot of the swallowing issues that others have. Getting to your dentist immediately is important and you may have to request a fluoride toothpaste and treatment if he/she is not on the ball with radiation issues long term. I had to switch dentists midstream to find proper care. Oral ulcers and food not tasting right made for tough eating. Drinking calories was easier. I made it without a feeding tube but lost weight and wonder if that was the best choice. Skin irritation left me with some light scarring and of course hearing was affected by radiation as well as surgery. Others benefit from speech therapists for swallowing issues. Oral lidocaine gel was a life saver for temporary pain control for eating. There is a nice mixture your radiation team can prescribe called Magic Mouthwash which also helps with discomfort.
Never hesitate to request a second opinion, as you are your best advocate for medical care. It sounds like you are at a highly ranked facility already. They may already have multiple doctors making case decisions. Radiation is not a fun experience, but you will get through it and the slow healing afterward. I suspect we all have residual changes thanks to our radiation, but life with changes is still the better option. Good luck to you.

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ruehoudon | @ruehoudon | 2 days ago

Hello, @sepdvm, and thank you for your kind reply. The treatment I had after surgery back in 2021 was radioactive iodine, and that has brought with it (I had two separate RAI treatments, 18 months apart) the dry mouth, gum inflammation and salivary issues that come with that treatment. So I well know the drill about that, and I see my dentist every four months for special cleanings and I'll see him again prior to radiation. Unfortunately, his wife has thyroid cancer, so he knows how to treat his patients with thyroid or mouth cancers. I am meticulous about my dental/oral health, so I suppose that helps a great deal. My radiation oncologist tells me that my jaw and mouth won't be implicted through the radiation treatment-- but I am double and triple checking, etc. Yes, at UCLA, there is an entire team of different specialist weighing in and since mine is a rare form of the disease, my case is trotted out at every tumor board and conference going. 🙂 The radiation team is clear about potential long-term side effects, which seem a bit daunting, but as you say-- living with side effects is usually preferable to the alternative. I send you peace and well wishes.

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