Meet others living with Head & Neck Cancer: Introduce yourself
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.
Connect

I had bilateral neck lymphadenopathy for thyroid cancer in October 2025 After, my neck was swollen from ear to ear, numb, tingling, filled with edema. This began to dissipate about 2-3 months after surgery and was manageable I had radiation therapy a week ago and now my face is again swollen and numb from ear to ear. My neck, especially under my chin is terribly swollen. Has anyone had this same experience and what did you do to alleviate it? Please help. I am so sad, angry and distraught
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1 Reaction@hrhwilliam
@kathleenmkastrup
I hear you with bells and whistles over the miles....
I know each day comes with dread and delight...
I know by showing up is more than enough....
Live with what we have....
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3 Reactions@kathleenmkastrup Some days we wake up and wonder why we are still here. Life isn’t fair. But within us somewhere is a part that keeps us going in hopes of better days.
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1 Reaction@hrhwilliam
Having a really bad day Just so sad I miss my husband and don't want to upset my kids by wallowing in my pity party I wake up each morning, and wish I didn't
Supposed to start radiation therapy, and dr is having trouble getting medicare to approve the shots I need before treatment I just want to get it over with Look in the mirror and see an old, sad woman looking back at me This is really taking a toll on me
Going to see a new dr today to see if there is a good fit for her to be my pcp My last dr left me undiagnosed for a year even though I told him I was having trouble breathing and swallowing When finally diagnosed by a different dr, cancer had spread into my lymph nodes and necessitated an 8 hour surgery
This is another reason I am sad and mad I have 8 siblings and none of them have lost a spouse and been diagnosed with cancer Why am I being picked on?
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2 Reactions@bayside Hello and welcome.
I read your story. It confirms my reasoning why I refuse my VA health care. In your case your cancer was on fire but they just couldn’t get around to it right away.
For me, when it comes to my healthcare and my life, I look for the best and deal with costs later on. After all, what good is anything in life if you are not here to enjoy it.
I’m sorry our great VA healthcare system came up short for you. This should qualify as a “friendly fire” incident. In the meantime, if there is anything any of us current or former patients can help you with, don’t hesitate to ask. Our response is likely much faster than Dr. Uncle Sam.
Thank you for responding , Jeff. It sounds like you and I are in the same boat or roller coaster with a cut nerve. My surgeon said the same thing , as good as it gets. I guess they are just practicing on us.
I hope you get some relief with your tongue. I am only one year out from surgery. Eating , speaking and sight are a problem. Frustrating but not insurmountable I am hoping it gets better for you and I.
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1 Reaction@bayside Thank you for sharing this. I’m sorry you are going through all of this. I’m likely going in for another surgery soon. I’m almost 2 years out from radiation for squamous cell carcinoma they removed from my tongue. I’m hoping that the surgery will replace the part of my tongue that they removed originally and that it will help me be able to speak better and to open my mouth properly again. I had a radical disectomy at the time of the original surgery and they cut a nerve leaving the left side of my face and neck down past my collarbone numb. The surgeon told me that it’s probably as good as it’s going to get. The entire experience has been an emotional roller coaster and life changing. I’m praying for your healing and speedy full recovery. Stay Strong
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1 Reaction@bayside Very sorry for your struggle. I had early intervention but only because I was persistent.
We all put trust in doctors and sadly sometimes they and the system fail. Your message is a reminder to all of us to be persistent as far as delays.
Prayers for you.
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1 ReactionI have completed surgery and treatment for tonsil and throat cancer. Post surgery I had 33 radiation treatment but no chemo. The cancer did not travel to lymph nodes.
It was a difficult process that resulted in weight loss, swallowing issues and dry mouth. Now two years cancer free and living normal life other than more selectivity in my diet. Fatigue was high year 1 and has improved. Had excellent ENT surgeon, oncologist and radiation team.
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2 ReactionsSorry for all you are going through. Gold weights can be placed in your eyelid to enable closing. Paralysis is permanent. Too late now, but for others, go to a large teaching hospital that specializes in head and neck cancer, first, not as a last resort. You get the best surgeons and testing facilities. Radiation is brutal with tons of side-effects, some temporary and some your forever friends. Unfortunately as the years go on you may see new radiation damage issues arise. I am living proof after 15 years that, at least for me, it only continues to worsen. Please consider finding more competent doctors and if necessary, go to their offices and say you won't leave until the doctor sees you. It has worked gor me. Desparate times need desparate actions. Sometimes you must shout to heard and you are your best advocate. Take care.
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3 Reactions