r/HeadandNeckCancer

It's been awhile since I posted. I've been on this journey for a little over a year. If you're interested in more specifics, my previous posts explain in more detail.

I have 2 cancers.

The first, which was very difficult to find, is DCIS, so has been non-aggressive. I'm currently undergoing testing to see if it's changed it's mind about that. If so, I can start chemo, etc. but no surgery because I'm too weak and malnourished for that.

The second, which was/is very aggressive, is neck & throat cancer with unknown primary. The unknown primary thing is bad. Very bad. And pretty rare (only 5-10% of all cancer patients). And I've been seen by multiple oncology specialists. No chemo because no primary. I had a pretty massive RT neck dissection 10 months ago, followed by pretty intense radiation treatments.

Also had PEG tube inserted and still have to use it. Even with that I've lost 100 lbs in the last 6 months. Needless to say, I'm malnourished and very weak. Labs are all over the place. It's been less than a week since I've finally been able to take sips of water instead of sucking on ice (that's been a game changer)

The ENT oncologist surgeon told me it had already spread to surrounding tissue and MAY have gone vascular. Found out that they expected it to show back up somewhere on my 3-month scan (it didn't) and that I would be gone by now.

6-month scan... Acute hypermetabolic axillary lymph node.

I've been getting the tests to rule out the breast CA, but my onco is pretty sure it's not. So am I. The lymph node biopsy came back metastatic non-small-cell carcinoma. My onco wants me to stay hopeful, but we both think it's the aggressive cancer. There's no treatment.

They are still trying to find the primary, but are not hopeful about that.

Mentally, I'm doing pretty okay. I'm making plans (funeral and bucket list stuff). I'm not afraid of dying. I'm sad to leave my family, especially my son. He's a grown man and my best caregiver. I was a single mom and he's my only child so we've always been very close. I'm also very close to my brothers, sis-in-law, and nieces & nephews. Pretty close to my extended family too. And I have a few close friends that have been uber- supportive.

The people on here... you have all helped me on this journey more than you can know. I can share shit here that I only share with my cancer counselor.

I'm not just giving up. I still have some things I want to do.

Thank you all for letting me share my journey through this wasteland with you. ✌🏻 & 🤟

Hey everyone,

Dad (62) diagnosed with oral cancer T2N0 I need some support and kind words.

We are seeing the radiation doctor next week. There won’t be surgery since it’s on the roof of the mouth. So radiation and chemotherapy it is.

I been looking up a lot of things and knows that it’s going to be tough for the next 2-5 month for my dad and will support him at my best of abilities.
I know that feeding tube is necessary and it may take up to a year for him to be back to normal.
It’s just crazy to think because my dad is a fighter and such an energetic person.

How can we support him as caretakers? Outside the usually stuff.

Advice would be appreciated.

Im almost starting the treatment i always wonder how long to recover and how well 🙃

Hi everyone,

Recently my mother (47F) was diagnosed with SSC. Her doctors say that it is aggressive and that there is a 30% chance that it will come back after all the treatment is done. She has had surgery done, and is currently going through radiation and chemo. I am her daughter, 20 years old, and I am feeling very frustrated. I know doctors can not give a 100% chance, but what if the treatment doesn't work and it does come back. What is all this pain and suffering for? She wants to live, she wants to see the world, and I want her to be in my life. I just feel frustrated with cancer and going to these appointments and talking to the doctors. Her doctors are great, and I know they are doing the best they can with the tools they have. I just don't understand what to do when reoccurrence happens.

My significant other has stage 4 floor of mouth cancer which has spread to his lymph nodes and jawbone. He’s scheduled for a mandibulectomy with fibula free flap in a few weeks. Can anyone tell me what the recovery is like and what is the quality of life after this surgery? This all progressed rapidly and the doctors gave us very little information. I want to know what he can expect and what I should plan for as his caregiver. Thank you in advance for any info you can share. I’m a nervous wreck.

I had surgery about 10 months ago. I had my right parotid gland removed and 24 lymph nodes. I have certain things I am dealing with I hoped would get better. Most of my numbness is gone or just a loss of some sensation. I am dealing okay with that. Still get random pain if eat or talk too much. It’s not too bad. But I get fluid in my jaw, neck and shoulder and it’s pretty uncomfortable at times. If it’s bad enough I lose most of my hearing in right ear. Doctor says to massage it. But sometimes it makes things worse. Is there anything I can do or avoid doing that might help? The ear especially makes me off balance and nauseous.

Hello,

A family member is sufferring from dry mouth following radiation therapy for nasopharyngeal cancer 10+ years ago. They have only about 30% of saliva producing.

The longer term effects of dry mouth are starting to become quite apparent with dental issues occurring.

I've heard that Biotene products are effective at helping to reduce dry mouth. There seems to be a mouthwash, gel, spray, and toothpaste.

Should all 4 be used or of these products, what would be considered most effective?

Any other tips and advice, especially from those who are also experiencing the effects of dry mouth, would be greatly appreciated!

Thanks to everyone that posts to this sub. I've been getting an amazing amount of real life information that you don't get from doctors or any other support groups. It's an amazing community and I felt it was time I contributed in case someone else is going through what I'm going through.

I'm only at the start of my journey but the amount of ups and downs and information is already overwhelming. This might be in too much detail below but feel the more info the better, for people possibly going through something similar.

I am a fit and healthy male in my early 50s, married with a daughter who is 11 nearly 12. I go to the gym three or four times a week, I do yoga/pilates multiple times a week and cycle regularly. I smoked many years ago but gave that up a long while back and don't really drink, maybe once or twice a year.

The first symptom I had was in late Feb/early March this year when I noticed one eye was tearing up more than the other when I was on long cycle rides. That went on for a couple of weeks but as I had been diagnosed with dry eyes last time I had reading glasses fitted I just put it down to that. Then some time early April I noticed a small lump appear right on the tear duct of that eye. I immediately went to my GP that week and he sent me to the eye and ear hospital to get it checked out, but he suspected it was a blocked tear duct (explaining the tearing up in one eye).

At the eye and ear hospital the doctor flushed my tear duct but it didn't affect the lump at all....not good. He called in a snr consultant who didn't like the look of the lump (it was very small) but it was now above and below the median line of the eye, 1st real sign of something possibly very bad. So they sent me for an urgent CT, next day I think, which showed a suspicious/cancerous mass in the orbital/sinonasal region. I went for a MRI the following day and got those results a few days later saying likely cancerous mass in the ethmoid sinus, with orbital extension through thin bone dividing sinus/orbit of the eye. Luckily there as no obvious brain/skull base breach and the eye/optic nerve still largely preserved at that stage.

But as you all know everything comes with an asterix *. You start to quickly learn doctor speak, so they aren't going to give you 100%s on anything. For example, no obvious brain/skull involvement doesn't mean that there isn't any and getting them to indicate 'management' vs 'curative intent' seems like a minor difference but it's everything. My doctors have been amazing but they have their own language that you have to learn and navigate.

I went for a biopsy that week, well it was called endoscopic sinus surgery as they wanted to get as much samples as they could, from my sinus, my eye orbit and cheek by going up through the nose.

Biopsy histology report confirmed sinonasal squamous cell carcinoma (SNSCC) p16+ and was sent for a localized CT on the orbit of the eye and a PET-CT to see how far it had spread and if it was secondary/primary etc.

The initial plan before the PET-CT was that I'd be going for chemoradation to reduce the tumor and then follow up surgery to try and remove what's left but this was prior to MDT first meeting. I could tell that they were hoping to control or manage the progress but didn't seem too confident of the long term efficacy. But at that point I was hoping I'd make it to Christmas to be able to put my affairs in order and have a little time with my family/friends to say goodbye. This type of cancer is super aggressive and the numbers aren't good.

Lots of people say that the unknown part of this can be the worst part mentally (I'm sure that's not true after reading some of the brave stories of chemo/radiation) but it sure has been scary. So far the scariest wait and meeting was the PET-CT results. Felt like that would indicate if I had a fight ahead of me or if I had a very short time before dying. I'm pretty level headed and confident person but I was spiraling the night before that meeting.

That brings me up to the present, like 6 weeks after discovering a tiny lump after having a teary eye. My PET-CT just came back and that the tumor is primary, confined to the sinonasal/orbital mass appears to be surgically resectable, there is no distant metastasis and no lymph node spread as well as no secondary detected. I feel incredibly lucky to say that, but obviously still facing a locally advanced stage IVA, highly dangerous form of cancer with a significant recurrence risk but hey you have to take the wins when you get them. So I think as of today it's classed as 'cT4aN0M0 sinonasal squamous cell carcinoma with orbital invasion'

Good news followed by the inevitable *. So the fact that it looks resectable and that it hasn't spread anywhere the MDT has changed my treatment plan 180 degrees. I'm now due for a orbital exenteration (removal of the eye/orbital contents) followed by chemoradiation. So I was preparing mentally for hard chemo & radiation for the summer, now I'm going to be losing an eye and dealing with the impact of that before starting chemo/radiation as soon as my surgery heals. Your perspective changes so much, this is what I would consider at this point, amazingly good news. If you told me that 8 weeks ago I'd have been devastated.

It's a weird journey this cancer business and this sub has been a very real and meaningful support for me which I'll sure to be leaning on while I go through this sh*tshow.

Any advice or anyone having a similar journey feel free to comment, if not, thanks for reading xx.

Hi everyone, (I posted in the MBC group as well but wanted to ask here as well in case someone here may know) I had surgery 4/29 to remove a mass that was found in my right cerebellum.

I’ve now met with the radiation oncologist and the plan will be to do 5 rounds of radiation (SRS) in that spot.

If anyone experienced SRS radiation can you tell me how it was for you and side effects?

Another question for anyone with brain mets, how are you doing? How has treatment been for you?

My close relative , 77, male, tongue SCC, had reconstructive free flap surgery a month ago, now getting ready for 6 weeks of radiation at Stanford soon. No chemo. We are very scared for short term and long term side effects. Surgery was good almost going back to normal eating and speech ( his normal since he had oral lichen plants for a long time) . I’d appreciate any tip to manage radiation side effects , acupuncture, natural remedies, medication, …

I had Stage 2 (T1N1M0) Nasopharyngeal Carcinoma. I went through chemotherapy and radiation therapy, I was in remission for about 18 months and now they suspect that it has returned. They have spotted a 6mm tumour on my nasopharynx that they believe is a recurrent tumour.

What are my odds of survival? What likelihood is treatment and what would it look like?

Hello fellow badasses!
Stage 2 tonsil and lymph nodes. Had surgery in March and now on week 4 of radiation.
I live in Florida and the sun is pretty harsh. I also love to be outside. I went for a hike this morning wearing a floppy hat to protect from the sun.
It helped pretty much, but I’m wondering if anyone else has a better idea.
I am trying to walk in the mornings when the sun isn’t up too high.

Hi guys!

My dad underwent a matxillectomy with free flap fibula surgery where his whole upper jaw was removed and reconstructed in January.

He completed his 30 RT on 27/03/2026.

I wanted some insights on what can i do for him in these cases-

1. Swollen face on the right side. Lymphatic fluid probably. What can i do, his under-eye is swollen bad.

2. His mouth smells quite weird. What can we do about it? He is doing the soda rinses but anything else?

Hi all, it’s me again with all of my late stage side effects. I have a new one and wondering if something experienced something similar. Not reaching out to my docs (yet) because I’m on holiday so can’t go to the hospital anyways, so I need my cancer buddies.

Since a week or so I experience a weird sensation of fullness around the neck. It’s diffuse and covers the sides of my neck, the front, from jaw to collarbone. as it’s diffuse I’m not directly worried for recurrence. it basically feels like when you have a full nose due to a cold, only then weirdly in the neck area. it also feels suffocating. I have no visible or palpable swelling, but my muscles are hard due to the fibrosis. 13 months out of chemo radiation for tonsil + 2 lymph nodes mets. any ideas?

Hi, I’ve read a lot about tongue cancer treatment experiences and people saying they wished they had gotten tube feeding sooner during treatment. I have tongue cancer and already had a partial glossectomy that I had done due to precancerous cells which obviously did not solve the problem. However I also have anorexia Nervosa with severe trauma from forced tube feeding and literally unconsciously pull out an ng tube if it is inserted. Is it possible to do chemo and radiation without the insertion of a tube?

My Dad has SCC in upper Maxilla. After losing appetite and refusing totally to eat doctor said we can’t complete treatment before receiving enough nutrition and decided to put a feeding tube directly. But things are going worse, the tube is leaking food and his sugar rates keep on going high or low extremely which is causing very bas side effects. Doctor says tube isn’t the reason. Any ideas please?

Looks like I have joined the club that nobody wanted to join. I start Chemo/Radiation in 2 weeks. I understand that swallowing becomes an issue. Do you have any recommendations for blenders or pre made shakes?

Posting this as it may help someone going through this. My husband is going through 30 rounds of radiation for tongue cancer over a 6 week period. At around the 16th session the mouth, lips and throat pain/sores really started ramping up. Admittedly he wasn’t managing the pain well by upping or in some cases using the prescribed medications, but what he has found to be most helpful is a tablespoon of honey in warm water 3 times a day. He feels it’s actually “healing” the sores. He has 11 sessions left so hopefully this continues. Since he started doing this he hasn’t needed the oxy and is eating better. He even ate Mac n Cheese.

Hey everyone 🤗 my Dad 68 was diagnosed with stage 3 Oral Squamous Cell Carcinoma (SCC) with perineural invasion (PNI). We are waiting on PET Scan and then hoping to start treatment. At the moment, the doctors are saying radiation and chemo as his treatment plan (if they did surgically he would lose entire tongue)

His main issues is the severe pain from PNI and he has been in hospital past 3 weeks trying to get pain under control. Due to the pain and scc he is not eating a lot.

Just wondering if you have any tips,advice or suggestions which may be beneficial to him right now and for the future when treatment starts?

Thanks in advance

Hi, I'm 48F and am 13 months post chemo radiation for stage 3 SCC of the epiglottis - I had 4 of 6 rounds of Cisplatin and completed 36 rounds of radiation... freaking out because of a sore throat!! It's amazing the tricks the head can play on you. Can anyone else relate, I'm scared.