r/HeadandNeckCancer

Background: my mum (60F) was diagnosed with T2N2 HPV16+ tonsil SCC with lymph node involvement in December 2025. Also diagnosed with hepatitis B at that time, was put on antivirals to control that during treatment. She went through treatment, 36 Radiation & 2 high dose Cisplatin (was too sick for the third) it was fairly rough on her. She suffered aspiration pneumonia atleast twice and nearly died the last time (found unresponsive & not breathing in hospital bed). We finally made it out the other side, on a feeding tube but still at home and back to nearly normal. Had her three month PETCT done last week. Visit with the radonc today, tonsil cancer is completely gone, but scan revealed three areas of uptake in the liver, indeterminate, ultrasound & biopsy (if masses are found) to follow. If cancerous (radonc said they’re pretty confident it is a spread) she’ll probably be put on immunotherapy, but we know nothing for sure yet, was told the medical oncologist will tell us more.
Has anyone else went through this and made it? Does anyone know the prognosis if it is a metastasis to the liver? I’ll be giving the nurses a call tomorrow, this honestly took us all by huge surprise and we were shocked, didn’t ask the important questions we should’ve asked, even walked out the hospital without scheduling the next appointment 🫠
Any advice is welcome. Thank you for reading

I’m compiling a list of items that will help aid, comfort and tolerate the radiation and the recovery.

I’ve got non-HPV SCC. Left tonsil. No spread anywhere else detected.

Any hints, tips, tricks and items you used to make this more tolerable is very much appreciated.

Our patient’s last radiation session was one month ago. He has been in Gabapentin throughout all the radiation , so he didn’t have much problem with the pain except when eating . Now, one month after radiation ended and despite he is still taking Gabapentin ( on taper) , he still has pain when eating , even putting lidocaine on his tongue doesn’t help . He tried to eat soft food but he is obviously in pain . Had anyone else had the same experience? I feel one month is a long time to still be in such pain.

46M here. I’m done with chemo of 6 weeks and have 6 more radiation treatments left. My mouth is DESTROYED! Everything tastes like crap and I’m ready to eat! I can handle the pain to swallow but my mouth is sooooo dry. Just looking for any advice or “hacks” that could help. Even thin soup turns into sand instantly.

I don’t even know where to start.
My mom was diagnosed with tongue cancer in June. Luckily, the tumor was small and not very advanced. About a month ago, she was admitted to the hospital for four days for various tests. She had an MRI, PET-CT, endoscopy, etc., and the good news was that the cancer hadn’t spread anywhere else in her body. The doctor said it didn’t even seem to have reached stage 1 yet although we won’t know for until later.

They decided to remove about 30% of her tongue and did a skin graft using tissue from her left thigh. They also removed the lymph nodes near her tongue as a precaution against metastasis. The first surgery happened last week.

The biopsy from the surgery comes out tomorrow, and that will give us more information about whether she needs chemotherapy, radiation, both, or neither.

Unfortunately, the blood vessels in her thigh were very weak and thin, so the skin graft didn’t go as well as they had hoped. About half of the graft has signs of blood circulation, while the other half doesn’t. She already had revision surgery two days after the initial surgery, and now they’re saying they need to remove the half of the skin graft that doesn’t have blood flow this Friday.
Despite everything, she’s doing pretty well. Today, they changed her tracheostomy tube to a smaller one that allows her to talk. I was so happy to hear her voice again after more than a week. It’s still very difficult to understand what she’s saying because of the swelling in her tongue, and her voice is extremely raspy, but just hearing her speak again made me so happy.

It was absolutely terrible hearing her have these horrible coughing fits multiple times a night, sometimes for hours, while she had the tracheostomy. And the sputum suctioning she needed almost every hour… Seeing her thrash around in pain and discomfort in the hospital bed when she had been perfectly healthy just a week before surgery… going on vacation, shopping with me, doing all the normal things she loved… has been incredibly difficult.

My dad and I have been taking turns caring for her at the hospital. What I never would have expected was how emotionally difficult it would be to take care of a family member in the hospital.

Honestly, the actual caregiving isn’t physically difficult for me. I’m in my fourth year of nursing school, so I’m used to taking care of patients, and luckily it’s summer break, so I can be there for her without having to worry about schoolwork.

But 99% of the hardship comes from the absolute soul-crushing heartbreak of seeing someone you love become almost unrecognizable in a hospital bed.
My mom is the most amazing and caring woman I have ever met, and I know she will always be the most amazing woman I ever meet. She is incredibly selfless, and she shows her love through acts of service and words of affirmation.
So not being able to hear her warm, familiar voice telling me she loves me has been gut-wrenching.

Until yesterday, we communicated by having her write on a whiteboard. Today, after they changed her tracheostomy tube, she was able to speak again. Her voice was very raspy and I could barely understand her, but after about five minutes of getting her voice back, the first thing she told me was:
“I’m very sorry that you have to go through this. I feel bad that you met me as a mom, because the last thing I want to do is put my daughter through something like this. I’m so sorry. While I’m in the hospital, don’t think about me and go out and live your life. Meet your friends, go get something tasty to eat, and just go back to your everyday routine. Don’t worry about me.”

She said it so sincerely and genuinely, with a surprisingly upbeat and happy tone, presumably because she was trying to cheer me up.
But it had the exact opposite effect.
I almost burst into tears right there, but I didn’t want her to see me crying. I secretly blinked the tears away while I was pushing her wheelchair. I know that seeing me cry would absolutely devastate her.

I’m home now because it’s my dad’s turn to take care of her.
And the house feels so quiet. My mom is the most talkative person I know. She never stops talking, and I’ve always loved that about her. But now, coming home without her, it feels like all the warmth has been sucked out of the house.
Even when I try to change my mood by going to a café, meeting friends, or going shopping, I can’t stop thinking about her. She’s literally all I think about all day.
Even when I’m with friends trying to feel better, I keep checking my phone in case the hospital or my dad calls me with some kind of emergency. The anxiety is killing me.

So, how do you fellow daughters (or sons) who were best friends with your moms deal with this kind of pain? I’m really lost right now.
And for those of you who have had a loved one diagnosed with tongue cancer and treated with surgery, how are they doing now? I would really appreciate hearing your experiences and stories.
I just want to know that there’s a light at the end of this tunnel.

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Hi all,

I posted a few days ago about nausea induced by cisplatin. After more time, this nausea is mainly in the morning. Every morning I just wake up with a sharp acidy/burning sensation in my stomach that makes mornings really tough to deal with. I think the obvious answer is to eat food but after waking up I can't rush it. I also take omeprazole which I know is supposed to help with the acid. I just have the feeling of needing to gag but I don't vomit.

I slowly regain strength throughout the day, but I've also been needing to get hydration the last few days due to dehydration (causing low blood pressure). I just feel really lightheaded/unsteady sometimes and my heart rate is extremely fast.

Side note, I have to urinate a lot and it's all clear. I'm wondering if part of this is due to dehydration or something else? Did anyone else experience this? I went to an ER and they said the only abnormal thing was they found sugar in my urine. Does anyone have experience with this?

Beyond my stomach hurting and occasional dehydration, I really feel okay. I just feel like my entire life is now ruled by my stomach since it's so often upset/queasy. I don't know if this is nausea or the stomach lining being irritated or both.

Is there any routine or foods y'all recommend for dealing with this? Thank you

I've got this oddly sweet taste behind my teeth when I drink liquids, and the doctor said my mouth looked normal. I'm 3 weeks post last radiation and chemo (yay) and this popped up about 10 days ago. Anyone else experienced this or something similar?

I'm really really struggling. My aggressive scalp SCC has spread to my neck lymph nodes and I'm absolutely petrified. I'm so scared that I won't see my children again. I'm scared going to every scan to the point that I feel like I could be physically sick. I can't concentrate, I'm in brain fog and I want to cry during every happy moment with my children. Please help someone by telling me any positive stage 4 skin cancer stories, or anyone in remission? I can't stand the thought of not seeing my babies grow up. This is so cruel x

Hi, I'm following this group quite a lot recently, and it's so lovely to have others to chat to, as sometimes having cancer can feel lonely.

I have had an SCC, aggressive type, a CT scan showed enlarged lymph nodes in my neck (the same side as SCC). I now have severe ear pain and pain on my neck, I'm 100%positive it has spread to my lymph nodes. I'm having an ultrasound and biopsy on Wednesday.

Anyone treated and been cured of either stage 3 or 4 SCC cancer that has metasized? I'm looking for hope. I have a young family and I'm heartbroken.

One month post treatment. I have been trying a bunch of food this week, mostly smoothies. Today I ate cream of potato soup and it was one of the best things I have ever eaten. The closest thing I have had to solid food in about 6 weeks; I went about 5 weeks without anything by mouth at all besides the occasional sip of water.

Friends, I just had to tell someone who understands how huge this is.

Hi! In 2024 I was diagnosed with adenoid cystitis carcinoma in the trachea just below the vocal cords.i underwent the surgery followed by 33 sessions of radiation.During and after radiation I developed dysphagia for which I’ve been routinely undergoing esophageal dilation. I need to get it done roughly every 4-6 weeks since the last two and we are oscillating from 9mm to 14mm. Has anyone here had a similar serial dilation requirement? How long did it take to resolve? Surgery isn’t an option for me since the location of stricture is just below the vocal cords in the post cricoid area. The scar is around 6cm long. I am otherwise NED but the procedure and struggle around eating impacts my quality of life.

I recently was diagnosed at the end of July and I have met with the oncologist, been denied a PET scan, had two CAT scans been to the ENT. I have a surgery next week and I’m having my chemo port placed next week.

I’m experiencing a lot of frustration with my “cancer team “because they are not very helpful. The fact that the matter is, they are adding so much stress to my life because they are probably the worst set of professional communicator I have ever encountered. I was contacted 10 times by three different offices and 10 different people to tell me that my pet scan was denied by the insurance. This started on a Thursday and ended on a Wednesday. They do not tell me things I a decision was made about my chemo that would make me have to drive three hours a day and no one bothered to tell me that there was another option. I’m just so unbelievably frustrated about that.

Another thing that throws a big wrench in the years is that I started a new job next week and I haven’t been employed for almost a year. I wanna do this job because I think I’ll be good at it, I think it’ll be pretty easy, and I get new insurance however I live in a state where this insurance isn’t common and when I have to switch it I don’t no if it will even be taken here. I don’t know how to find out until I get the card and then on top of all that I’m trying to move closer to where I’m gonna get treatment and I’m trying to do a short-term lease and I can’t afford it. I’ve asked my caseworker to send the referrals, but she will not confirm that she’s done it. I ask her about it and she will not answer me directly, so I’m looking for it on my own and that’s also frustrating.

My family is willing to help in the way that they’re willing to help, it’s just not what I need help with right now. I feel some kind of way about this, but I don’t know how to express it appropriately or with any coherence.

I just don’t know if trying to find a different team is worth it, or whether I should just accept what I have because it might not be better.

I am just so tired already,

Hi everyone. I’m 22 and I’m looking for people who have had a similar experience.
I was initially diagnosed with papillary thyroid microcarcinoma (7 mm) and had my **first surgery, during which my thyroid was removed**. I was told that because the primary tumor was very small, the risk of significant spread was low.
I recently had a **second surgery**, this time to remove the central neck lymph nodes. The pathology was much more concerning than I expected: **7/7 lymph nodes removed were positive for metastasis**, with the largest metastatic focus measuring **12 mm**. However, there was **no extranodal extension (ENE)**.
My lateral neck lymph nodes have not been confirmed as metastatic. There were some suspicious nodes on ultrasound, but these were removed, and a Tg washout from one of the suspicious lateral nodes was **negative**.
I’m now going to have radioactive iodine (RAI) treatment.
I’m particularly worried about whether there could still be microscopic disease in the lateral lymph nodes, and whether RAI could eliminate microscopic iodine-avid disease without needing a lateral neck dissection.
**Has anyone had a similar situation, especially having 7/7 central lymph nodes positive after a second surgery, but no confirmed lateral metastases?**
Did you have RAI? Did you eventually need a lateral neck dissection? What happened to your Tg and ultrasound results afterward?
I’d really appreciate hearing from anyone who has gone through something similar.

I don't really know how to make a long story short, so please bear with me. Some of you might remember my history from previous posts. I have 2 separate cancers. DCIS RT breast that is pretty much irrelevant due to my 2nd cancer which is very aggressive and the only one I've been in any active treatment for.

The aggressive cancer is CUP (carcinoma unknown primary). I've had surgery and radiation. I'm stage 4 terminal. I was never a candidate for chemo due to unknown primary (it's not common). I've already signed my POLST DNR. My oncologist discussed palliative immunotherapy (keytruda) and we decided to try it.

I had my 1st (and last) infusion on July 21st. I went in for the 2nd infusion this past Wednesday, but my labs came back with a critically low potassium level (2.7). I had also become much weaker in the intervening weeks. So my onco DC'd the immunotherapy and instead I got a bag of potassium. We also made the decision (because he's aware that quality is more important to me than quantity) to turn my care over to my primary care provider. There are no further treatments. My onco also strongly suggested hospice care and discussed this with my PCP.

I should add that I also suffer from pretty severe malnutrition and a severely compromised immune system, so one or both of those will probably cause my death before the cancer (even though both are a direct result of the cancer).

Anyway. Thursday morning my PCP ran another potassium level. Still 2.7, so they sent me straight to ER where they did an EKG and hooked me up to another bag of potassium. By this time my level was down to 2.5, so they also gave me a bolus dose through my g-tube and admitted me to hospital on telemetry. They got my level back up to the 2.7.

Even though I'm a DNR they (and I) deemed it worth trying to prevent a cardiac event. Finally after another 24 hours with pretty massive amounts of IV and bolus potassium my level went up to 3.9 (within normal range) and discharged me Friday night.

I've been on increasing doses of gabapentin for pain management. It's not really effective anymore. In hospital they put me on IV Dilaudid. SO much more effective!

*Now, the gist of this is my question for anyone on hospice and/or pain management. What meds have you found the most effective? Especially effective with fewer side effects. And especially interested in how to control the amount I would have to ingest per g-tube due to swallowing issues. Any suggestions for IM meds or patches?

• April 2026: MRI found the tumor + biopsy confirmed squamous cell carcinoma (moderately differentiated)
• May 4 – June 16, 2026: Completed curative-intent chemoradiation:
• Radiation: 66 Gy to the tumor + nodes (IGRT technique), 30 sessions over ~6 weeks
• Chemo: 6 cycles of Cisplatin, given concurrently with radiation
• Side effects during treatment: skin irritation, mucositis (mouth/throat inflammation), and pain — all rated moderate (Grade 2)
• June 16, 2026: Treatment completed; discharged with advice to continue swallowing/mouth exercises, skin care, salt-water gargles, and follow up with speech/swallowing clinic
• No surgery has been performed at any point so far
• Aug 8, 2026: Follow-up MRI showed strong response to tumor and lymph node both shrank significantly, though a residual area remains

The tumor went from ~5.7 cm before treatment to ~4.3 cm The lymph node dropped from ~3.1 cm to ~1.3 cm — over a 50% reduction.

What’s confusing me:
1. Despite the “no restricted diffusion” finding, our treating radiation oncologist examined the patient directly and says this looks like residual disease, not just healing — largely based on direct exam (visible ulcer) plus two new symptoms: a significant bleeding episode during treatment (10 June) and a new small blood-tinged clot in mid-August, plus return of peak-intensity referred ear pain (present at diagnosis, resolved during treatment, now back).
2. He’s recommended a PET-CT, but it’s being scheduled at ~61 days post-radiation — from what I’ve read, the standard guidance is to wait at least 12 weeks (84 days) to avoid false positives from radiation inflammation. Curious if others have had PET-CT done this early and how reliable it turned out to be.

What I’m hoping to understand from this community:
• Has anyone had a similar “large ill-defined residual area + negative DWI + but doctor still says residual disease” situation? What did your PET-CT / biopsy end up showing?
• Any experience with PET-CT done earlier than the typical 12-week mark — how did your doctors interpret it?
• If your case ended up needing salvage treatment after chemoradiation, was surgery considered, and what determined whether it was an option?
• Any general perspective on new bleeding + returning referred ear pain at ~2 months post-chemoradiation — was this mucositis/healing in your experience, or did it turn out to be something more?

I am 8 days post tonsillectomy and neck dissection for HPV+ throat cancer. I am wondering if anyone else has had issues with their provider and pain meds? What is your provider's approach to opioids?

I had a check-in with the Nurse Practitioner from my ENT's office yesterday who said I'm healing well. I asked him to send another oxycodone prescription to the pharmacy since I would run out over the weekend. He would not do it and his reasons were all over the place:

"The pharmacy won't fill it if we submit too many" and "There are studies that opioids can make you more sensitive to pain" and "You have enough to get through the weekend" and "You've been taking too many". My prescription said I can take 5mg or 10mg every 4 hours and I followed that instruction.

Literally everyone on my care team told me "make sure you get ahead of the pain". The NP even acknowledged that what he was saying contradicted "get ahead of the pain".

If they wanted me to make 30 pills last for X number of days, they should have noted that with the Rx. I'm rationing my oxycodone to get through the weekend. Acetaminophen and ibuprofen just isn't enough.

I have been so upset since that appointment. I've been in good spirits throughout most of this journey but in addition to my PAIN, I'm now feeling anxious and sad. Maybe because it was the first time someone on the care team wasn't hearing me? And now I am worried about how I will get through radiation.

I get the sensitivity around opioids but I have a legit reason to take these meds. I only wish I didn't let the subject go in the moment.

Hi all, I have been recently diganosed and have surgery scheduled on aug 31. I am non smoker and occasional drinker.

I went to mexico in april and bit my tongue in sleep. My GP tested for herpes (-ve) and gave me steroid paste for canker sore.

June went for regular dentist visit and she asked for biposy which came back with cancer. Its not HPV related.

I am in complete shock and looking for positive stories and support. I hear really painful stories about radiation and reccurrence and makes me stressed and nervous

Have looked for answers on why I got it and what can I do that after treatment it never comes back - but I feel so helpless and not in control

My CT scans are clear but we will never know if it has spread till they do neck dissection.

Also my surgery is scheduled after a month I visited Ent surgeon. Is it normal?