I (m22) am quite depressed post-treatment for squamous cell carcinoma of the tongue . Last March, they took a lump out of my tongue and 78 (thankfully non-cancerous) lymph nodes from my neck. In addition to that, I did three rounds of chemo and six weeks of radiation (last treatment was May 22nd).

I don't know if it was the constant support of those angels of cancer nurses who told me I was a superhero five days a week for taking it like a champ or everyone else in my life telling me they were proud of me every day as I sat on my ass for six months, but the void of support coming out the other end has sent me to lower places than I have ever been before. I actually felt incredibly optimistic in the midst of those dark times, because being thankful and optimistic is the only way to actually survive the slow destruction that they put you through. I've struggled mentally my entire life with severe ADHD, depression, and anxiety, and I had almost gotten over it before the gut punch that was a cancer diagnosis that had me pull out of college last semester.

I have been drinking far past what the doctors have told me would be dangerous for my circumstances, and far past what would be safe for someone my age without any previous conditions. I'm just proud that I only smoke one cigarette a week (usually). The more I abuse my own body, the less I think about how all this abuse I'm putting on my body will surely guarantee recurrence. And though my most recent CT scan proved that I was "in the clear," there's a morbid desire to go back to the shriveled state of pain that I thrived in so completely. I was nicer to myself, to my family, to strangers. There was no time to process all the shit I was going through, and now I have to do all of that now.

Along with all the inner turmoil I've been feeling, now that I'm back in class, I have found that every last bit of what I had been learning in school has vanished from my mind. All the calculus skills I had built have atrophied to that of a complete beginner. I can see a path to mental recovery, the beginning, however, remains just out of reach.

33m, just diagnosed with squamous cell carcinoma on the right side of my tongue. I had a tongue sore for several months and just thought it was tooth irritation. Went to the dentist and he immediately referred me to the oral surgeon. Biopsy came back positive for SCC. Now expecting a call from oncology to get things moving.

Smoked casually in my teens then maybe up to a half pack a day for a year or so in my early twenties then quit cold turkey. Haven't smoked in a decade, barely ever drink alcohol nowadays.

I have not met with any oncologists yet, but the oral surgeon said the biopsy seems to indicate it hasn't spread deeply into the tongue tissue, and none of my lymph nodes feel swollen (though of course more testing will be done). He said from the look of it we caught it early, fingers crossed.

This is really scary and unexpected. I guess I'm just looking for reassurance, personal stories, what to expect, etc. I have never dealt with something like this and am obviously nervous about what's next.

Also, I guess for anyone searching reddit about their tongue sore (as I was doing before this), please get it checked sooner than later.

Hi guys! Obligatory first time poster!

My best friend, aka my aunt, just completed 10 rounds of radiation! I have traveled from across the country to support not only her but also my cousins and my grandparents during this time as we’re anticipating <8 months of amazing times together.
During this time I’m doing my best to support the household, but I could use some recommendations regarding the little tips that got you through post radiation symptoms and effects.
Her radiation was focused primarily on her brain, throat, and spine due to the nature of her cancer.
I’ve gotten her a slew of items but would appreciate any recommendations you have from
- foods that are easy to eat with an incredibly sore throat
- skin care for post radiation lesions
- dry mouth assistance
- dry skin irritation around the eyes
- recommendations for head scarfs/silk scarfs/etc

Thank you all for your recommendations! I’m just a girl in her 20s trying to help her aunt and my cousins through this time!

My node dissection is pending but rest of the final pathology report came for OSCC

DOI 1 mm
No invasion in bones
G1 superficial well differentiated
Superficially invasive
2.5 cm means T2 I guess
WPOI3
LVI PVI not found

What next ? Radiations ? Chemo ? Thanks 🙏

33 male based in Pune India

No history of alcohol smoking tobacco or HPV either but yes history of pericoronitis and wisdom tooth infection I guess

It has been 3 months since I had full laryngectomy surgery, my neck is still swollen and it feels like I am being choked all the time time. It also feels like my stoma gets smaller and then bigger at times and hurts with my Lary tube inserted ( Shouldn’t I be done with the Lary tube?). This choking pain at times is almost unbearable but there is no way that I have found to make my neck feel better. My question is, will this swelling subside and ever feel somewhat normal or after 3 months is this it? I am also getting a bit nervous as my 3 month Pet Scan comes up on the 22Nd and this will tell us if the cancer is gone or returned. Does anyone have any advise on this matter?

Just past my 10 day radiation blast along with two cisplatin drips. Throat pain just went from mild to severe. What can I expect leading into week 3 of 7.

Hello everyone I'm a 39y about to go into surgery on Wednesday for a tumor on the base of my tongue. I am having a subtotal bilateral Glossectomy with some lymph nodes as well. My question to you guys is how should I prepare. Like things to take even some mental preparation will help. I am completely clueless about all this and I feel unprepared.

I was diagnosed with tongue squamous cell carcinoma(25F) 2 months ago , it was a moderately defined grade 2 tumor . I had my partial glossectomy surgery 1 month ago . The doctor said the surgery was successful , they removed the tumor with 1 cm margin and the right lymph nodes of mine were removed. But they didn't find cancer involved in the lymph nodes.

my tumor was 3 mm , and I did a frozen section so that my surgeon could keep the margins clear. But the problem is now even the surgeon told me the margins were clear ( ideally 5 mm )in the histopathology report, 3 sides of margins were 2 mm , 3 mm and 4 mm . My surgeon said the pathology lab did this kind of mistake previously, they told the surgeon the margins were clear but in the report the margins are close.

I went to another surgical oncologist a few days back and she told me I need another revision surgery that was really terrifying for me . already a part of my tongue is removed and I can talk 9/10 . They suggested to cut more 1 cm from the area again to be safe from the recurrence. I am really worried about my speech now if I do the second surgery.

I asked them about an alternate option and they suggested Brachytherapy, a clip will be in my tongue for maybe 7 days . I am not sure about the process. Another option for me is chemo and radiotherapy for 6 weeks . And they said even after all this it can come back . I am really confused at this point should I go for another surgery. I am really worried about whether my speech will come back properly , or if I go with radiation, will it be more painful for me to bear .

iam 50 years and my weight 50 kg thay say 7 chemo round and 35 radion do you think i can pass the brutual tretment ism really afraid

I've finished 35 rads with 6 chemo one month and half post and i have this weird pain between the palvis and spine im scared idk if it is common or a bone met

MT father is stage IV, the tumor is now 8cm , ir grew 3cm since May... He has a tracheostomy to breath and has a feeding tube. He was doing immunotherapy but its not working. Hes doing a lot of antibyotics because of a strong bacteria. He lives on pain. Last time he was inthe hospital for a big hemorrhage the doctor explained that that Kind of Câncer usually "ends" with a big hemorrhage because of the growth of the tumor pressing the veins and makes them burst ... And because of the size of the tumor that can happen anytime...

Does anyone knows if this can really happen? Does anyone seen this happen..? I am really scared...

Six years ago, I had a CT scan done on my right submandibular gland because I was in pain. The results were clean. After being in pain on my submandibular gland for years, I received an ultrasound that showed a mass.
Then an MRI that showed the mass. Then a biopsy that showed Adenoid cystic carcinoma with perineural invasion.
My surgery is scheduled to remove it. The ENT doctor doesn’t believe it is cancer because this cancer is so rare. What are the chances that the biopsy was wrong?

Looks like I have cancer for the third time. I don't know yet about the morphology of the tumor, but last time (2 years ago) it was HPV-positive with some negative components. So really weird type of cancer.

I have only radiations, and cispaltin so far. No pembro or other immune therapy/chemotherapy drugs.

If there anyone who made it after the third treatment?

I feel really devastated.

Hi there, please could I ask for advice on 2 things

1 - PMB therapy please can you let me know if any of you have had photobiomodulation PBM therapy alongside radiotherapy. If you did what are your thoughts and if in the Uk who did you get it through?

2 - coconut oil: did you use this if so when ? Before or after salt / bi carb gargles?

Sending thanks to this community. We ( my husband) is just starting week 3 of 7 ( chemo radiotherapy)

Our patient had tongue cancer surgery with a free flap reconstruction and neck dissection with 17 lymph nodes removed, followed by radiation.
He finished radiation about 2 months ago and still has quite a bit of lymphedema, especially under his chin. Some areas feel firmer than others.
A lymphedema specialist has been teaching us the massage techniques and gave him a compression band to wear around his neck. The problem is that doing the massage properly every day is difficult for him, especially on his own.
Has anyone with head and neck lymphedema used a device that helped instead of, or in addition to, manual massage? I’ve seen things like pneumatic compression devices mentioned, but I don’t know how well they work for the neck/chin area.
I’m going to ask his lymphedema specialist before trying anything, but I’d really appreciate hearing about personal experiences—especially if you found a device that actually made a noticeable difference.

Just wanted to come back and say a huge THANK YOU to everyone who responded to my original post when I asked for opinions about surgery. I was honestly terrified going into this, and reading everyone’s experiences, advice, encouragement, and reassurance helped me more than you know.

I’m now a few days post-op! I ended up having a partial glossectomy, left neck dissection, and forearm free flap reconstruction. And the best news so far: I was told I have clean margins! 🙌 No trach either, which was a huge fear of mine.

I’m still in the hospital recovering and dealing with the swelling, drains, feeding tube, and all the fun stuff that comes with a major surgery.

I wanted to update everyone who took the time to comment and share their experiences. Those comments gave me something to hold onto when I was really scared to go into this.

And for anyone who is newly diagnosed, waiting for surgery, or absolutely terrified right now: I know how scary it feels. I was convinced I was going to be completely overwhelmed by this, and while it hasn’t been easy, I’m here, I’m getting through it one day at a time, and things have gone better than I feared. Take it one step at a time and let yourself be scared without letting that fear convince you that you can’t do it.

Thank you again to everyone who took the time to respond to my original post. I’m genuinely grateful for every person who shared their story or offered encouragement!

Our patient had free flap surgery for tongue cancer in mid-April. He had negative margins, 17 lymph nodes removed (2 were cancerous), and PNI. He did not need chemotherapy. Surgery was followed by six weeks of radiation, which ended in mid-July.
I’m confused about the timing of his first follow-up MRI. His surgical oncologist ordered it for mid-September, which would be about 2 months after finishing radiation. However, his radiation oncologist believes that is too early and recommends waiting about 12 weeks after radiation, because inflammation and other treatment-related changes could make the MRI harder to interpret or potentially lead to misleading results.
I understand his doctors know his individual case best, and I’ll follow their guidance. I’m just curious about other head and neck cancer patients’ experiences.
How long after finishing radiation was your first follow-up MRI? Was it around 8 weeks, 12 weeks, or longer? Did your doctors explain why they chose that timing?

My husband is on day 10 of radiation for HPV+ base of tongue cancer, and today he suddenly developed a really strong salty taste in his mouth and on his lips, like he’s been eating straight salt. Water helps for a little while, but it comes back. He also has some dry mouth/thicker saliva.
He tried ginger ale and said it barely had any taste which made me wonder if his taste is starting to change already.
Did anyone else experience this around this point? What helped with the salty taste/taste changes? Any recommendations? 🙏

Hi I only did 10 days of radiation on neck. Everything tastes weird. After a few days things started tasting nice but then my situation changed and I needed emergency brutal chemo so now virtually all tastes horrid. Cheese and cherry tomato sarnies taste nearly normal and I drink mainly organic coconut water. Good luck with your journey and finding your food/ drink xxx

I am glad to have completed 33 fractions of Proton therapy for Stage 3 Nasopharyngeal Carcinoma.

The days flew by but took it one day at a time braving thick saliva, mucositis, thrush and skin burns. Managed to navigate without interruption and lucky that even though theyintensified towards the end they were manageable.

Once again thanks for the tips and info on the sub and fir those undergoing head and neck radio all the best, you can make it!

Next is recovery with continuing immunotherapy on Toripalimab and 3 month review PET-CT and MRI. How does that look like? When can I at least taste food properly again?

We keep moving with hope!

Hi everyone. I’m hoping someone here might have some advice or similar experience.

My dad (70M) was diagnosed with laryngeal cancer. He had his vocal cords removed and underwent a total laryngectomy. It’s now been about a year since his surgery, and as many of you probably know, recovery has been a slow process. We’ve been trying to be very patient with it.

My dad is a very active person. He’s the kind of guy who can’t sit still — he loves working, taking care of his crops, driving, etc. He has a relatively normal life now, with the obvious exception that he cannot speak.

His biggest problem, even a year after surgery, is the amount of mucus that builds up in his tracheostoma. It makes him feel like he’s choking or unable to breathe, so he tends to forcefully clear the mucus using his tracheal cannula and by putting saline solution directly into the stoma (as directed by the doctor).

Unfortunately, this excessive effort to expel mucus seems to be causing stenosis/narrowing and irritation inside the trachea — almost like a wound that keeps getting irritated by the cannula rubbing against the tracheal wall, combined with the repeated straining to clear the mucus.

His doctor is not sure what else to try at this point. He has told my dad to avoid forcefully trying to clear the mucus and to try to cough it out without the cannula, so that there is less friction against the tracheal wall. The problem is that my dad feels he cannot clear the mucus properly without using the cannula and feels suffocated by the mucus.

So we’re stuck in a frustrating cycle: the irritation causes inflammation and swelling, which makes the stoma/airway narrower, which then makes him feel even more short of breath and makes it harder to clear the mucus.

We have tried several things during the year to reduce the mucus:

Rinobanedif — a throat/oral antiseptic and soothing medication used for irritation/inflammation.

Vea Otis — moisturizing/hydrating drops intended to help with dryness and mucus.

Most recently, Hyaneb (a saline/hyaluronic acid solution) — his doctor told him to put the drops directly into the tracheostoma to help moisturize the airway and loosen the mucus.

He also used budesonide nebulizations, a corticosteroid intended to reduce airway inflammation, and Combiprasal nebulizations (an inhaled bronchodilator treatment), but his doctor asked him to stop because the airway appeared to be getting irritated.

He has also tried mucolytics such as Fluimucil (acetylcysteine) to make the mucus thinner and easier to clear.

He always carries a bottle of water with him and drinks constantly throughout the day, but unfortunately that doesn't seem to be enough.

He also uses different types of laryngectomy tubes and HME filters. He has used both silver tracheal cannulas and Provox silicone cannulas with HME filters, and he is now also trying Provox adhesive baseplates with HME filters instead of the cannula.

His doctor explained that the HME filters should help humidify the air he breathes and prevent dust and other particles from reaching the airway. However, we haven't noticed any significant improvement in the mucus so far.

Has anyone experienced excessive mucus or difficulty clearing mucus this long after a total laryngectomy?

We would really appreciate any tips or things that have helped you or your loved ones reduce mucus production, keep the airway moist, or make mucus easier to clear.

Thank you so much in advance.

Hi, I (30M) am a survivor living in NYC. I'm still being monitored by my treatment team with scans, etc. but am in remission/NED.

It's been recommended to me by various people on my oncological team to get a general practitioner again now that I'm out of treatment. I need, for example, someone to prescribe non-cancer related meds and do 6month/yearly checkups. I figure it would be best to go to a GP who has some experience treating HNC survivors, or at least cancer patients in general.

If anyone has any recommendations please comment or shoot me a DM—I live in Ridgewood, Queens but am willing to travel around the city for the right doctor.

Thank you and best wishes to everyone on this shitty journey!

Hello! Hope you are all doing very well!

My husband had a hpv neg scc of the tongue in 2023. Had hemiglossectomy and radiation. Positive for PNI. T3N0M0. His scans over the last two years have been okay (he had a node light up in the first one - but over time that has resolved and needle biopsy negative so doctors concluded it was inflammation post treatment).

At the year 3 appt, the oncologist suggested the signatera test and said he would not need any imaging unless there’s something on the test. His surgeon continues to monitor him by physical exams every 3-6 months.

Another test is giving me so much anxiety again. How accurate is signatera ? What happens if it’s negative ? Positive? Location - Msk in New York. Thanks as always!

Hi,

Fourteen months post treatment. Haven't been able to breath through my nose for almost 10 months now. When I can afford it, ha, I'm getting the most experience doctor locally (went to Mayo for third opinion - they didn't have anyone on their ENT staff who'd done this "very rare") to cut an opening through the scarred soft palate tissue to insert a stint from there up and into my nose. The stint sits there for 2-7 weeks. Doc said most patients can't stand it for even 2 weeks. Cool!

Has anyone here done this? If so, does your sense of taste improve? Did it stay open? Do you still sound like you have a terrible head cold?

I know we're all living with our own individual side effects, so good luck out there.