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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?
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@roblem Good Morning, I could relate to your symptoms. Thank you for posting the info and your journey. Have a great weekend 🙂
C.
@56tburd Thank you. I never knew these surgeries
In the throat/mouth exsisted.
Never dreamed I’d get throat cancer. Such a large group
Of people suffering so much.
I hear it is on the rise. Incredibly difficult recoveries!
Healing to us all!!!
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2 ReactionsThank you.
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@logi What a constant misery for you to endure. Know that nerve tissue is very slow to heal, but healing is possible. I have had healing in my damaged facial nerve for years after the surgery. Sometimes we forget the basic pain relief and numbing of an ice pack. Have you tried that? After my thoracic surgery and a chest tube that is the only thing that helped me sleep at night. Also Lidocaine patches either OTC or stronger thru your doctor's prescription. They might take the edge off. I like the Salonpas brand but there are many available.
Nerve pain is tough to control. I would be looking into acupuncture and asking your PT about a TENS unit. Also a serious discussion about a PEG tube for nutrition while you are trying to manage all of this. Have strength. This is torture but there is a light at the end of the tunnel. I am 14 years out now. Hugs to you.
@logi I'm sorry you've had to go through all of this. Losing a portion of your tongue complicates things substantially. It's a lot, but you are not alone. Most of us have had challenges beyond which most people are accustomed. I've been dealing with aftereffects for 20 years, so I can tell you it gets better, or maybe I've just gotten used to it. Allow yourself to grieve what you've lost and hold onto the hope that things will improve. Wishing you well.
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2 ReactionsI am so sorry you have been through so much. I have avoided radiation and chemo, but an mri in august will tell.
Problem is mine shoulder hurts like hell, everything I do there is active severe pain. I start therapy tomorrow, but it hurts too much.
When I can get it healed, a massager would be heaven. Thank you for your response.
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1 ReactionHi @logi
At age 39, I was officially Stage IVB T2N3M0 Tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am now 17ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds (211mg each) for a total of 633 mgs of the platinum-based chemo Cisplatin.
My accessory spinal nerve is damaged (called Brachial Plexus Legions/Neuropathy) which is why my left shoulder sags (droopy) and trapezius muscles wasting away with winging of the scapula which includes limited range of motion. What made it even worse was that I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. I have since read some posts here and found my own device online called Hugterra (Amazon has a few copycats that are cheaper, but I wanted the original one) which helped relieve some of those neuropathy symptoms and discomfort coming from neck and shoulders. It provides 15-minute daily sessions that blend massage, stretching, Electrical Muscle Stimulation (EMS), and heat therapy, enhancing circulation, relaxing tense muscles, and restoring the neck's natural curve.
Definitely helped my neck stiffness and pain which then helps swallowing etc. Some people on this site also use Tactile Medical Flexitouch Pump or Shiatsu Neck Massager.
Good luck on your journey.
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4 ReactionsHi. Had throat cancer surgery Feb.25, 2026. Removed 1/2 tongue
Back of mouth and portion floor of mouth. Supposedly they got all the cancer but have mri in august. It has been a horrific recovery. Lost 30 pounds and extreme difficulty eating, swallowing.
A big and constant pain is the spinal accessory nerve was damaged. My shoulder droops, the clavical sticks way out and the pain is significant all the time. Started gabapentin weeks ago, taking 900 mg. It’s not working and have been on norco since surgery which now I can’t take with the gabapentin. Use heating pad but seems to make it worse. Between the pain and swallowing I cry a lot. Swallow therapist says I have to stop clearing my throat which I do constantly. I do it all the time even after the exercises she gave me to stop. Eating is a nightmare. I am on a soft chew diet and choke most of the time. They put off a feeding tube to see if swallow therapy would work. Between the constant pain using my arm and choking, I am a mess(and trying not to clear my throat) I am freaked out. It was a brutal surgery with reconstruction from my forearm and thigh. Anyone relate to this?
The spinal accessory injury?
Thank you. Casey
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3 Reactions@cgoins1031 Hi Christian. My experience was in 2006. Little information was available back then on what we would have to deal with for aftereffects of radiation. With syncope, a possible culprit is baroreflex failure, something I've been dealing with for years. A large percentage of people who've had radiation of the neck are likely to experience this. I've posted issue elsewhere, but a quick run-down is this. Radiation hardens the blood vessels, making it difficult for your baroreceptors to detect blood pressure variations leading to wild swings of BP readings. There is no cure, so it's a matter of treating the symptoms of hypertension/hypotension to improve quality of life. I've posted the protocol I've been using under baroreflex failure. It isn't perfect, but at least I feel like I have some control. I wish you well.
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1 Reaction@cgoins1031 Hello Christian and welcome. Is your diagnosis a Baroreflex disorder? I have seen others with this issue and it seems to be difficult to find medical experts to deal with this. Travel to a large medical center may be necessary. Can your PCP or oncologist give you a referral? The Mayo system is a good place to look. I hope that others like @56tburd can chime in and share their information.