April is Head & Neck Cancer Awareness Month, and we asked our Facebook community a simple question: What symptoms led to your head and neck cancer diagnosis?
The response was overwhelming. Hundreds of survivors, caregivers, and loved ones shared their stories. What emerged wasn’t just a list of symptoms — it was a powerful reminder of how varied, subtle, and easily overlooked the warning signs of head and neck cancer can be.
We’ve organized their responses below. If any of these sound familiar, please don’t wait to get checked.
Lumps and Swelling in the Neck
The most commonly reported symptom was a lump in the neck — often painless, sometimes dismissed, and frequently the first visible sign that something was wrong.
- I woke up one morning with a 3.5cm node on right side of neck. Still took 3 months for a positive diagnosis of HPV+ P16 SCC — Chris C.
- Golf ball sized lump on the side of my neck. — Brian K.
- I felt a lump in the left side of my neck while shaving. — Brad C.
- A lump in my neck found when putting on sunscreen. — Kimberly M.
Sometimes the lump appeared suddenly and grew fast. Lee H. described waking up one morning with what he thought was a cyst the size of a golf ball on his neck: Went to urgent care, cause I thought it might be a cyst. They sent me to the ER. They sent me to UNC Chapel Hill ear, nose and throat. The doctor saw the lump and tried to move it around under the skin with his fingers. Looked at me and said, ‘You have cancer.’ A cyst will move around but cancer will not because it’s anchored. Praise the Lord — 5 years No Evidence of Disease. — Lee H.
For others, the lump had been present for years and was repeatedly dismissed. Linda C. shared that she had a pea-sized lump under her right ear for 25 years, repeatedly told it was just a swollen lymph node. It wasn’t until a hospital stay for a kidney infection that a doctor finally ordered an ultrasound.
- Fast forward a year — I had cancer of the parotid gland. Two operations and 30 sessions of radiotherapy. Please everyone, check all your bits and bobs. — Linda C.
- Lump under my left ear for 5+ years that kept getting blown off as a ‘swollen lymph node.’ Found a new PCP and she ordered an ultrasound. It turned out to be a malignant parotid gland tumor. — Amber L.
Sores and Patches in the Mouth That Wouldn’t Heal
Many people first noticed something unusual in their mouth — a sore, a white patch, or a spot that simply refused to heal. In several cases, they were told initially it was nothing.
- I had what I thought was a canker sore, then it became a lump. I went to my dentist thinking it was an infection. He referred me to an oral surgeon who took a biopsy and it came back SCC. It had eaten into my jaw bone but thankfully didn’t spread to my lymph nodes. I’m now 3 months post radiation. — Andrea H.
- White patch by my tonsil. I had 2 dentists and 3 doctors look and they said they didn’t see anything. I got referred to an ENT and he looked and said he wouldn’t even have to do a biopsy. That was on a Thursday and by the next Tuesday I was at the cancer doctor. — Tammy K.
- I had a painful lump under my chin/left side of my neck that got worse and I finally looked in my mouth and saw a mass on the back left side of my tongue. No ulcer, no warning that I saw or was ever caught by my dental team. I was also told I was too young and healthy despite this rapidly growing mass. Self advocacy is incredibly important. — Stef G.
- Jennifer E. caught hers at stage 1: White sore on the left underside of my tongue that I thought was an ulcer. I also had trouble swallowing, sore throat, hoarseness, jaw and ear pain. My dentist biopsied the spot and pathology came back as squamous cell carcinoma, stage 1. I had surgery to remove and am now 2 years cancer free. Early detection is key! — Jennifer E.
- Patrice G. had been monitored for Oral Lichen Planus for years with regular biopsies, all negative. In spite of being checked and having my teeth cleaned every 3 months, I had an OLP lesion that did not heal. My periodontist biopsied and it came back positive for squamous cell carcinoma.
Throat and Swallowing Symptoms
Persistent sore throats, difficulty swallowing, and a feeling of something stuck in the throat were among the most common symptoms — and among the most frequently attributed to other causes.
- I kept feeling like I had something stuck in my throat (popcorn). I ignored it for a few months then eventually went to A&E. They couldn’t see anything so referred me to ENT a few days later, put camera down my nose and saw tumour on back of tongue covering 75% of my throat. — Samantha E.
- I felt like I had a hair caught in my throat that I couldn’t dislodge. Ended up being tonsil cancer. Also had a lump on my neck, which was lymph node cancer, secondary to the tonsil cancer. — Sue H.
- Renee M. experienced swallowing issues for years before a diagnosis: For a couple of years I was having trouble swallowing. It started with medications that would get stuck. My gastroenterologist kept stretching my esophagus. My swallowing was better for a few days and then back to medication and now food getting stuck. My cancer was diagnosed after I had an ultrasound of my thyroid that showed multiple lymph nodes were enlarged. My advice: be proactive. If something doesn’t feel right, insist they do more tests.— Renee M.
Hoarseness and Voice Changes
Voice changes — hoarseness, a deepening voice, or a voice that simply disappeared — were a recurring theme, particularly for laryngeal cancers.
- My voice became huskier and huskier. I had laryngeal cancer, often late diagnosed in women as we are only 10% of patients. I’m young for it too, and kept being sent away until I insisted on an ENT referral. They instantly saw the tumour — too late to save my larynx. I’d been seeking treatment for over 6 years by then. — Melanie F.
- Lost voice, diagnosed with Stage 4 throat cancer in 2017, total laryngectomy. NED to this day. — Tim R.
- Hank D. had a particularly complex path to diagnosis 21 years ago: Difficulty swallowing then shortness of breath and loss of my voice. I was a Sales Manager and Trainer, my voice was my livelihood. My PCP ordered a round of antibiotics, did complete palpitations of my neck and nothing. She referred me to an ENT who could only diagnose a swollen tongue. He set up a whole set of scopes and during that procedure he found a lump in my tongue pressing back against my throat. It took him 4 slices, going deeper each time to finally get a positive biopsy of SCC. — Hank D.
Ear Pain
Earaches and “ear infections” that wouldn’t respond to antibiotics appeared again and again in our community’s responses, a symptom that often doesn’t register as a potential cancer warning sign.
- Recurring ear infection which were not infections. — Joanne R.
- I had an earache that wouldn’t go away. I was put on several different types of antibiotics. Nothing seemed to help. I started coughing up big blood clots. Finally got in to see my ENT. She did a scope up the nose and said I don’t see anything. I told her that something was wrong, I have an earache and I’m coughing up blood. She ordered a CAT scan and there it was — a big tumor. By now the cancer had paralyzed part of the right side of my voice box. It had literally eaten through the wall of my esophagus and affected the lymph nodes. — Heidi P.
- I had a rash on the right side of my tongue along the side. I also started to lose mobility in my tongue. The worst part was I had a THROBBING earache. I was misdiagnosed for months until an ENT finally took me seriously and put me in an MRI machine and did a biopsy. Keep advocating for yourself. If I would have given up I would already be dead. No one knows your body better than you do. — Brittany Z.
Unexpected and Easy-to-Miss Symptoms
Some of our community members had symptoms that seemed completely unrelated to cancer (or no symptoms at all).
- None. I had a small lump behind my ear. Then it started to get bigger. — Helen A.
- I had absolutely no symptoms. — Jennifer W.
- Not me but my husband — an annual dental check-up where the dentist identified swollen lymph nodes. — Norma Jean C.
- Kristan R. had a headache on the opposite side of her head from the tumor: My PCP decided to do an MRI, looking for a brain tumor. He called about 3 hours later to tell me I didn’t have a right side brain tumor, but I did have a large mass on the left side parotid gland. I had never heard of a parotid gland in my life.
- Absolutely nothing, so I thought. It’s painless. I was feeling so fit, lost a little weight, and had the tiniest round lump in my neck — it was so small. It was my instinct that said get that checked. So glad I listened. 35 radiation treatments, 5 chemo, now I’m in the all clear. — Colleen G.
The Problem of Being Dismissed
One of the most painful threads running through these stories isn’t a symptom — it’s what happened after people reported their symptoms. Being dismissed, misdiagnosed, or sent away with antibiotics was strikingly common.
- I mentioned it a total of 9 times over 2 years to my doctor. After the 3rd time she did refer me to an ENT and the ENT said he didn’t see or feel anything. He never scoped me, never ordered any scans, just looked in my throat and ears and felt my neck. She literally started making me feel like I was crazy and imagining the sore throat. I wasn’t going to go back to the doctor that made me feel crazy, so I went to the ER. Finally moved back to MA and went to my old primary who sent me to an ENT. Was scoped and the doctor knew it was cancer. I had a 5cm tumor on my epiglottis that had started to spread into adjacent tissue. Currently NED. — Meghan M.
- Pain in my ear, back of my head, and trouble swallowing. Doctor kept saying it was nothing sinister. Kept saying neuralgia. But after 10 months of waiting, finally seen ENT and confirmed throat cancer. So in the meantime it spread from the back of my throat to my larynx and I had a total laryngectomy. It should never have gotten to the stage where I lost my voice. You put your trust in your doctor and get let down. — James G.
- Brian M., a retired nurse practitioner, put it plainly: Reading through these responses, what is most striking is that the majority of us had no pain. The medical profession has, by and large, done a poor job of educating the public about cancer symptoms. Spread the word: if something seems off with your body, get it checked out, even if you are pain free. — Brian M.
What This Tells Us
Head and neck cancer doesn’t always look the way people expect. It can be a painless lump, a sore that won’t heal, a persistent earache, or a voice that keeps getting worse. It can hide behind a diagnosis of tonsillitis, sinus infection, TMJ, or acid reflux. And it can be missed — sometimes for months or years.
The people in our community who caught their cancer early often credit a dentist, a persistent gut feeling, or a doctor who took them seriously. Those who faced delays almost universally describe the same frustration: being told it was nothing, sent home with antibiotics, and having to fight for answers.
Many have learned an important lesson: if the first treatment doesn’t work, it is a clear signal to dive deeper. When a ‘minor’ problem doesn’t go away as expected, it’s time to ask more questions. Our survivors often say that their best tool was their own ‘gut feeling’ and the courage to keep looking for answers until they found the right one.
If something feels off, trust yourself. Advocate for a referral. Ask for a scope or a scan. See an ENT. Learn about the risk factors, HPV vaccination, and more on this website.
The experiences shared above were submitted by members of our online community and reflect individual accounts only. They are not intended as medical advice and do not represent clinical data or verified diagnoses. If you are experiencing symptoms, please consult a qualified healthcare provider.
