Thank you so much for your response. Thankfully there is no pain and no hairy type issue. I have been on a regular diet for quite a while now. I see the ENT Cancer specialist first part of February so hoping he can provide more into then. Again, I truly appreciate the response.

Hello Jay (gelibby2003),

Sorry to hear of your wife's diagnosis with advanced base of tongue OSCC.

I am hoping you both begin to notice gradual improvement.

I am so sorry to hear you have been so devastated to witness your wife's suffering and that she is experiencing this.

Nels and other forum staff and members who have been through similar treatment regimens will hopefully be on responding to give you some encouragement.

In the meantime I can only echo some of the things they have offered to encourage others with in a similar treatment recovery.

I am pretty sure Nels has said things like recovery from the radiation can be more patience testing than the surgery recovery, measured more in weeks than in days that he experienced with his surgical recovery.

So I hope and pray that these weeks have passed you guys are both able to notice some slight improvements at least, and here is hoping that they keep increasing and she heals well and increasingly quickly.

I hope you both are able to experience some moments of levity apart the trials, and can encourage her with your presence, and can try to be upbeat for her and of good cheer, if that is at all fitting to her present experience.

I hope and pray the pain medication is able to alleviate her suffering; that the pain is not non-responsive to medication, that she can learn to thrive apart from this.

I hope you can find a support network for yourself, that you have good family and friends nearby to help out, to keep you in good shape as you care for her, to try to keep your spirits up, as you try to care for her and keep her encouraged and that she begins to increasingly thrive and heal.

Sincerely,

Chris

Hello Sequoyah,

One thing that can happen, and did happen to me following more my partial glossectomy than either of my two diagnosing biopsies, was that as I was on a near liquid diet for long enough the taste buds do not get worn down. So as your tongue is healing and immobile the taste buds can take on an almost "hairy" appearance and feel. You MIGHT be experiencing something similar to that. For me once my tongue returned to normal size, and I could eat solid foods again the odd hairy tongue phenomenon went away. I think my surgeon prepped me for that possible side effect, or I asked about it at a follow up visit.

Once things start scraping the quickly growing taste buds, the outer layer of cells get scraped off and things go back to normal, that was my understanding.

By four months I would think if your diet is back to normal and you have no pain eating, if the above explanation were it, it would have been resolved.

I do have some odd textures and areas, some have mild pain in certain times and certain tongue positions.

My surgeon said in my cases, it is likely just after effects of the trauma of surgery.

New scar tissue forms and pulls the tongue into new shapes, new areas of rub with teeth develop, etc...

But its crucial to discuss that with your surgeon and let them examine that to ensure it is something benign along those lines.

Best wishes for a simple benign explanation.

R/
CQ

Hello TBO1986,

I just re-read your post in the introduce yourself forum and thought to myself, "Man I was sure I responded to that post already...did my post get deleted or something?!?".

Turns out you posted the same thing in the symptoms and diagnosis forum, and that was were I responded.

But because my senile self is likely to repeat the process I too am going to double post, below is was I responded to your identical post in the other forum...that way it doesn't look like you are being ignored in this forum at least...

____________________________________________Repeated copied text below______________________________________________________________________________________

Welcome to the forums.

Dysplasia is a potentially pre-cancerous condition.

It is similar to say a colon polyp detected on colonoscopy that gets removed and biopsied and comes back not entirely healthy but not strictly pre-cancerous either.


My oral cancer experience started in a similar fashion as you described.

Roughly 5 years before I developed cancer on my right lateral tongue a dentist noticed a white spot. She was super crucial in educating me to take this dead serious and that I had to get it biopsied if it did not go away in a few weeks.

My biopsy was moderate epethial dysplasia. The oral surgeon who did that biopsy then referred me to an oral surgeon who specialized in cancer for ANNUAL follow up, essentially for life.

It was explained to me with the moderate dysplasia I had ROUGHLY a 10% chance of it converting to cancer over my entire life.

Mild dysplasia I am guessing has a slightly less chance of converting to cancer.

Early detection is crucial not just in terms of survival or suffering in recovery from radical treatments but also quality of life issues for things like speaking, swallowing, saliva, keeling your teeth etc…

My 2nd oral surgeon (1st one who specialized in oral cancer) moved about 3 years into follow up and referred me to another who I saw for about 2 years before a pimple like lesion errupted next to the 1st biopsy scar.

So roughly 5 years after the initial possibly pre-cancerous moderate dysplasia this tiny zit like pustule was removed sent to pathology and came back cancer.

As soon as I had a cancer diagnosis I sought out treatment at our nearest Comprehensive Cancer Center and was triaged in to see a Cancer ENT Surgeon in like 2 days.

Very partial glossectomy like a month and a half later, with wider margins and a throat scope and no further cancer found just more dysplasia, this time mild grade.

A month later and I was 90% back to normal 3 months and I could chew on the roughest of foods and eat spices.

Catching it early allowed that.

No chemo or radiation thus far, no neck disection for lymph node removal thus far.

Bi monthly follow ups the first year, every 3 months this second year after surgery.

5 years of no evidence of disease you are considered in remission (semi “cured”).

So if your insurance situation does not allow regular follow up; at an absolute minimum stay on red alert for any changes or developments doing your own oral exams and seek competent medical care if you ever notice anything change and work it out until you have definitive answers.


Since my surgery I have had this year ultrasounds, male mammogram, abdominal MRI and a PET/CT of mid thigh through skull.
(some from other symptoms)

3 Armpit lymph nodes on the PET/CT lit up from the tracer. Pending biopsy decision on that, possible its just inflammation or infection.

All that to say “getting in the system” early and staying on top of things and doing your part can help to keep things from getting much worse.

There are no garuntees in this, but sometimes you can be proactive and help yourself be situated well.

So now at my next visit we will discuss the PET/CT and I hope to have the lymph nodes biopsied before then.

Waiting on interventional radiology to decide if they can get to the nodes with ultrasound guided fine needle biopsy.

Here is hoping your experience ends with just some mild dysplasia that never progresses to anything bothersome.

Best wishes and take care,

R/

Chris

Hello Sequoyah,

Welcome to the OCF Forums.

Sorry to hear about your recent unexpected cancer diagnosis.

Sorry to hear also you had an oral lesion that did not heal in 2-3 weeks and did not know to get it biopsied sooner.

This point going forward, any lesion you have in your mouth that does not heal in 2-3 weeks, the standard of care is to get a biopsy to rule out cancer. Not to beat a dead horse, and you can't do anything about it now, but 6 months is way to long to wait for an oral lesion to heal, unless there is a clear reason for it not to (say rubbing dentures, or dental appliances, and even then you need to be closely evaluated and likely biopsied, as chronic irritation from such things is thought to be a potential trigger for potential development of oral cancer).

I say that in case you ever get any OTHER lesions in your mouth, if they don't heal in a few weeks, be sure to insist on scheduling a biopsy, even if a dentist tells you like I was told by my current dentist "oh that's nothing to worry about....". I had a younger dentist who found the original pre-cancerous tongue lesion about 5 years ago who very seriously instilled in my a healthy respect for being diligent in following up on this white lesion. She was great, but left this dental practice. My current dentist, who my oral surgeon asked that I see before I made an unscheduled follow up (I was on an annual follow up screening schedule, until things progressed/changed, then it was understood I'd contact his office for an earlier appointment and/or biopsy), evaluating me for the sore spot on my tongue near the pre-cancerous lesion biopsy scar, said something to the effect of "oh, that's nothing to worry about").

It was a tad awkward at my next regular dental checkup when they asked about medical history, and I said yeah, now I have oral cancer on my tongue, you can update your records with that.... She meant well, but was under-educated in that regard. The first dentist, STELLAR, this other one, she's fine with cavities and what not, but should stop telling people non-healing oral lesions are nothing to be concerned about....

I had a pre-cancerous white spot on my tongue that was biopsied shortly after my dentist found it. It was pre-cancerous, leukoplakia with moderate epithelial dysplasia.

I was followed closely annually for almost 5 years by cancer specializing oral surgeons and a sore, very minor, very subtle appeared. That was biopsied and found to be cancer.

I'd imagine you will be seen by an cancer specializing ENT surgeon, hopefully at a Comprehensive Cancer Center (CCC) (see https://www.cancer.gov/research/infrastructure/cancer-centers/find ).

I was referred out to a Cancer ENT surgeon after my oral surgeon (cancer specializing one too) called me with the malignant biopsy results.

The ENT surgeon did a very partial glossectomy as my biopsy margins were too narrow.

I too had not a single risk factor, besides perhaps I used to use an alcohol based mouthwash, I guess there is some evidence that may lend itself to irritating the oral mucosa and possibly dysplasia, which is a "potentially pre-cancerous" condition, which in my case DID develop into cancer.

My lesion was also on the side of my tongue, right side in my case, about halfway back the length of the oral tongue.

My pre-cancerous lesion was about the size of a pencil eraser. It was just a white oval lesion, with no pain.

My cancerous pustule like eruption that came like almost 5 years later, was about the size of the last generation wired headphones plug jack, what is that like 2.5 mm I think. The surgeon took out a larger piece of tissue about a 1 cm, if I recall correctly, in both biopsies.

I met with a CCC Cancer ENT Surgeon I think the day after my oral surgeon called my with the biopsy results finding the cancer.

I was triaged in quickly, and they ordered the pathology slides from my other hopsital's pathology for review.

In my case surgery was not scheduled for like a month, but mine was very small, and lower risk.

Because it was so small, I did not even have a PET/CT prior to my partial glossectomy.

Mine was sub-centimeter and was just past being carcinoma-in situ, and had just barely penetrated the basement membrane of the epithelial tissue layer into the muscle and other tissue layers below the "skin" of the tongue.

So my surgeon did not think a neck disection or even a sentinel lymph node biopsy was indicated at the time of the (very) partial glossectomy, nor a PET/CT. He ended up taking a piece of tongue out about an inch long, a cm wide, and I have no idea how deep, not very. He said I would have no lasting defect in speech or eating, would fully recover in about a month, be out of work a week or two. I think I was home a week and some change. More visible stitches than the biopsies. Popscicle diet. Mine was a day surgery. Neck dissection or sentinel lymph node biopsy I'd imagine you'd be at the hospital a good bit. Or if they need to take more tongue.

I am about 1.5 years out of my cancer surgery, had a PET/CT this September, a few armpit lymph nodes showed up on the PET/CT and some minor jawbone lymph node activity, that the radiologist deemed "likely reactive".

Armpit lymph nodes were needle biopised, no cancer found there. Recurrence is always a concern, especially as my partial glossectomy found no additional cancer, but did find more dysplastic tissue ("potentially" precancerous)

If you are able to become a patient at a Comprehensive Cancer Center, I'd strongly encourage you to seek out treatment there. You'll experience the best level of care and integrated approach, and more apt to find experts with extensive experience treating your exact type of cancer.

If you end up having some exotic form, MD Anderson in TX is the top of the list of CCC.

Another member mentioned HPV testing I think.

I asked my surgeon about that, and he is of the school of thought that is more of a base of tongue cancer thing.

I keep forgetting to show him the photo in the oral pathology textbook written by the oral pathologist who did my initial biopsy that shows a lesion on the side of the tongue that was HPV associated Oral Squamous Cell Carcinoma (OSCC) upon detailed pathological testing.

So apparently lateral tongue OSCC can be HPV related but it is more commonly associated with base of tongue cancer. Seemingly this is an area of changing knowledge as well.

Oh, when they did the partial glossectomy they also did a direct laryngoscopy looking for any other tumors in the base of tongue area or anywhere in the pharnyx/larnyx, basically all the ENT cancer areas gets visually scoped and anything suspicious gets biopsied at the time of the partial glossectomy.

If your tumor was deep enough or advanced enough, the first place it is apt to spread is to the your lymph nodes in your neck.

If it is borderline deep they may just take a few lymph nodes, if the concern is greater a full neck dissection is apt to occur.

That will give your treatment team critical information to plan how to proceed with your treatment.

If superficial of a tumor, no chemo or radiation MIGHT be recommended. If they find cancer in a lymph node a more aggressive approach will be warranted.

Even if minor and superficial invasion is found (fingers crossed for you), careful close follow up to detect an recurrence EARLY is key.

Even if the news is NOT good, do not despair.

There are plenty of people on this forum who had their initial diagnosis at advanced stages with lymph node spread. Treatment has advanced quite a lot.

One day at a time.

I hope you have a good support network of friends/family to assist you as you cope with the news and treatment.

I hope and pray the pathology reports bring as good news as you can hope for, and if not, you find an excellent cancer team to put your mind at ease and move forward as best as you can in your particular situation.

Best wishes as you continue on, keeping living and doing the things you enjoy as you embark on this experience.

R/

CQ

Well I did see my Cancer ENT Surgeon 11/19/2025 for my regularly scheduled interval follow up exams.

We did look at my PET/CT images, as I had concern about the right side of my neck showing some increased FDG uptake, and noted the pain I had between the corner of my jaw running down the right side of my neck to my collar bone. One of the lymph nodes on the PET/CT did look like it was kind of on that line beneath the collarbone.

Hopefully I did not shoot myself in the foot by saying perhaps my sense of pain is psycho-somatic (as I sit here typing this with probably a 2 or 3 right sided neck muscle pain, like when you've strained your neck, but no recollection of any traumatic, or repettive motion kind of thing, besides perhaps swiveling my head to check my mirrors driving commercial sized trucks and snow plows, but why a right side bias is unclear to me), as I was looking at the scans.

PET/CT shows several FDG avid right axillary lymph nodes with one SUV max of 5 point something, radiologist deemed of indterminate nature. Did a CT guided core needle and fine needle aspiration (FNA) biopsy that was on the first attempt non-diagnostic. Repeat needle biopsy was non-diagnostic on the the FNA, as it was again, almost entirely blood. The Core needle had actually lymph tissue with no evidence of cancer found, but a disclaimer that close clinical and radialogic correlation was crucial, as it may not be representative of the entire node.

The repeat needle biopsy at the time of this 11/19 appointment had already been ordered by the breast surgeon, but had not yet been done.

We have discussed the new leukoplakia for probably over a year now, and while I could feel nothing bump wise until about 6 months ago, and then it would come and go. My ENT surgeon, thus far, has been unable to feel the tiny bump I can now consistently find and feel.

He had previously offered an in clinic biopsy of the white lesion, but this time when I was asking him to examine this spot I am feeling, he could not feel it, and was kind of missing it, so he watched as I stuffed my finger in my mouth, and was kind of surprised how deep I was going, (kind of a LOL thing I guess). I don't think I gagged, but he was concerned about making me gag. He said where I was going was too deep to near the base of tongue to do an in clinic biopsy.

He said that he would need to do another general anesthesia direct laryngoscopy to biopsy that area (if I recall correctly, I was a tad shocked he was offering up another general anesthesia/minor surgical procedure as previously we had discussed just do quick local anesthesia in clinic excisional biopsy, nice and simple for him to do.

So I was kind of caught mentally off guard, but had several concerns I couldn't think to verbalize quick enough.

I did kind of get some of my concerns off my chest, about my actual cancerous lesion being nigh impossible for the oral surgeon to even tell what to biopsy, as it was so very subtle. In the end that oral surgeon could detect the bump with the wooden end of a cotton swab by rubbing it across the surface of the tongue. It was not much bigger than the size of that wooden cotton swab end, and it was actually cancer.

One of my concerns is that if my current ENT cancer surgeon can't feel what I am feeling how would he even know what to remove. Maybe it is that once I am on the table unconscious he'd be more able to deeply palpate all areas of the tongue without worrying about making me toss my cookies with a gag reflex. The white patchy area, as far as I can see, doesn't quite match the bump that feels deeper and further back. Still very very small. I can just consistently find it. It is tender upon palpating it. It does not remain sore after I irritate it by feeling it agressively like my original tongue lesion that happened to be cancerous EVENTUALLY did. It was after the oral surgeon tweaked it for a bit, and it remained sore consistently for a couple weeks, that I was determined to ask for it to be biopsied.

I'd hate to go through all that only for him to scope me and not find anything to biopsy. I don't think it was because he had a high suspicion of finding anything base of tongue on the laryngoscopy, as it was his response to me asking about the spot about 1cm below, and maybe to 1 cm further back. So he wasn't strongly encouraging me to schedule that, just that if I felt this new bump was growing or progressing that's how he'd want to do it.

I said as soon as you can feel where it is, then, for sure, I'd want you to biopsy it.

So I see him again 2/18/2026 and if anything develops or changes, call to make an earlier visit and schedule the general anesthesia procedure is the plan.

I did notice that area behind lower molars, near the corner of the jawbone, retromolar trigone, I guess, an area where he had noted some general white patchy leukoplakia more consistent with Wickham Striae (sp?), had glowed with a auto-phosphersence (no dyes or anything) kind of effect when I shined a black light on it. That is a change. A nurse called me back asking me to clarify, I though I did, but the notes she sent to the NP was that I was concerned with my teeth showing up on the black light. SMH.

The area of oral mucosa behind the molars, kind of like the insides of your cheeks but further back. I don't think that nurse was specific to the oral cancer office. I included the pictures.

Apparently that's not a concern.

So now as I sit here and my right side of my neck is sore, I've mentioned that briefly, but it is getting increasingly annoying, I'm on the fence of sending out YET ANOTHER patient gateway message to his team.

Striking the balance between early intervention while not crying wolf at every little thing, it is becoming an increasingly difficult balance.

I'll bite my tongue, as it were, for now, and wait to see if the neck pain begins to resolve. I can't find any bumps or lumps in my neck. Turning my head all the way left of right does aggravate it. Maybe just general old age and inflammation. If it continues to worsen or just does not go way after a couple weeks I'll send another message and see if it is concerning to him.

It's kind of crazy with micro-metastasis and micro-invasive small stage 1 tumors, anything sub-centimeter is not likely to show up on PET/CT. My original cancer likely would not have show up on a PET/CT.

Hopefully soon they'll advance PET/CT technology to be 10 or 100 times more sensitive/accurate for tiny tumors.

Thankful for what technology and medicine we do have, hopeful for continued advances.

Well that experience was a bit confusing.

I thought a non-diagnostic needle biopsy attempt would automatically trigger another needle biopsy attempt appointment.

Once I contacted my surgeons office after waiting a week or so after the non-diagnostic pathology report was released, for them to call me and say "hey, they didn't get the required tissue we need to do it again", a nurse practitioner for my surgeon called me back after I reached out and inquired about a repeat needle biopsy. She seemingly balked, said something about not wanting to put me through that again, and I replied, to deaf ears, it was not worse than a minor bee sting, I'd be happy to do it again to get results. She then said it would be best to follow up with my GP. Her notes indicated that we had agreed, I was like not really, I was asking for a repeat order or whatever if that is the protocol. Nurse practitioner said that if it was a neck lymph node my oncology ENT surgeon would just do an excisional biopsy to get a certain pathology result, but the armpit was outside of his domain.

Contacted my GP and he was like no idea why they'd refer you back to me (perhaps they did not think the PET/CT FDG avid lymph node was concerning enough, or too small a target for an accurate lymph node repeat needle, but they said none of that, so I have no idea).

MY GP did encourage me to keep working it up.

So I called a number at the breast clinic offices of the same CCC and they set me up with a a breast cancer surgeon the next day to see about an axillary lymph node excisional dissection. I was a little surprised they triaged me right away like that, I told my GP I just wanted to loop him in as well, in case I'd need a referral from him. No referral needed. Saw the breast cancer surgeon the next day I think it was. (they do axillary (armpit) lymph node dissection all they time with breast cancer patients)

She was great, looked over the PET CT with me, and discussed the risks of excisional biopsy, and was seemingly leaning towards doing that, but looking at the PET/CT again the node they had initially targetted looked like such a perfect straight shot, she then kind of switched in her voiced preference to give the needle biopsy one more shot.

This time she asked interventional cross sectional radiology to emplace some "fiducials", little non-ferrous inert metal beads that should the repeat needle biopsy fail, or turn up cancer, she'd be able to surgically locate and excise the exact lymph node.

The second needle biopsy went as well, or better than the first even. I'd go back dozens of times not a bad experience at all, in my case. The local anesthesia lidocaine stung a bit at first, but the rest was fine. So I am not sure why the NP was all about "not wanting to put me through that again..."

For the fine needle aspiration on the second attempt, same results of the first, mostly blood, non-diagnostic sample, no lymphatic cells present.

The second core needle biopsy result actually harvested some lymph tissue this time, with no evidence of carcinoma. Some features of a reactive lymph node were noted.

They did include a pretty large disclaimer about it being of the utmost importance the ordering physician do a close clinical correlation of clinical symptoms and radiology results as the same size was very small and may not be indicative of the state of the entire lymph node.

The surgeon called me back this week, to close the loop, and said at this time no further work up is indicated.

So I'm not 100% satisified, but I do agree we are better situated now, having at least some lymph tissue from that node pathologically examined and no cancer was found.

One good thing is that now those fiducial beads are implanted, I'll try to remember to ask about a repeat PET/CT maybe 9 months or a year (well 9 months from now would be a year from the last PET/CT). Seems to me that if the same 3 lymph nodes were still FDG avid then, then an excisional surgical biopsy approach would absolutely be indicated then (barring a solid explanation from the experts on why they may do that apart from cancer, but would seem highly suspicious to my layperson self).

I did note with her on the phone call I still have some lumpy bumps and ridge and valley type features that are sore on the edge of both pectoral muscles where they border the armpit area, which did not seem to register as being significant with her.

I have a lot of minor pains and sore spots, that I kind of down play in severity, well not really down play, as they are just low level annoying sore spots. To me its signals from my body, but I guess that's the fun of medical diagnositcs, filtering out the signal from all the noise.

As we get older more aches and pains...just a little hyper-vigilant I am not missing some early symptom of recurrence or spread.

I never really thought it would be my oral squamous cell carcinoma from my tongue, a tiny micro-invasive grade 1 tumor, I would be a textbook oddity and subject of someones paper I'd imagine if it was OSCC in the armpit lymph node after such an early small tumor.

I was concerned (and still remain not 100% at ease about it) about another primary, be it lymphoma, melanoma, or some kind of soft tissue sarcoma with the odd cystic like feeling sore spots on the pectoral muscles.

But, so far, no news of further cancer.

I'll keep close tabs on all this with my various doctors. At least I am now an established patient with another CCC oncology surgeon and have some fiducial markers implanted if the nodes decide to not be benign.

That's all the news from Lake Woebegone, as it were, with regards to this experience.

I recommend that you request a test for the presence of HPV P16 or 18 laboratory results from your mouth lesion.
This viral infection is the most common cause of oral cancer and head and neck cancers.

I’m new to all of this. I’m a 52 year old healthy male. I spend 40 minutes a day 6 days a week on an elliptical machine, and eat a mostly vegetarian diet, trying to stay healthy. I don’t drink at all, don’t smoke or use any type of drugs. No health complications at all. Back in January of this year, 2025, I had what I thought was a canker sore under the side of my tongue. Approximately 6 months after it didn’t heal or go away, I saw a dentist and ultimately an oral surgeon who excised the lesion and was later diagnosed with Squamous Cell Carcinoma. I literally have not a single risk factor for this type of cancer so no idea how or why this happened to me which is extremely frustrating. I am waiting on more test results to find out if I need to get the lymph nodes in my neck removed.

Hope to meet some people in the same situation and gain some educational and motivational support here. Thanks.

Hello all. Brand new here. I had a tongue lesion removed back in August of this year and was diagnosed as Squamous Cell Carcinoma.Never thought I would ever be told I have cancer. In any case, 4 months later, I still have a very rough texture on the side of my tongue. Tumor was removed from the side and under my tongue. All of the taste buds on that one side feel very rough and feels so odd in my mouth. No pain or anything, just thought it would go back to feeling normal this long after surgery. Anyone else gone through this that can encourage me? Thanks so much.

I frimly believe once youve had cancer and had any type of chemo/ radiation, you expose yourself to new type of cancers down the road. Doctors will say its unrelated, but i think its bullshit. Its all related. Hang in there and good luck!

Do you know if its hpv +?

I’m so sorry to hear what you’re going through. I’m sorry no one else has replied to you as it is a lonely time.
My husband 54 was diagnosed with stage 4 N2b in February and underwent a mandibulectomy. No smoking, drinking and a very fit man.
Unfortunately he denied all other treatment after surgery and got himself removed from the hospital check up list so I understand how difficult this is, the not knowing, the waiting, the hurt and the grief.
I don’t have any magic answers I’m sorry, but hang on to the special moments.
It is difficult to be on the other side seeing the changes that occur to both our spouses and to our own lives, life just isn’t the same and it is an adjustment I’m still not used to.
I pray that your wife will make it. Just remember to take care of yourself too

New here. My wife (mid 50s) was diagnosed in May 2025 with Tongue/base of tongue SCC, which was staged at IVA with extension to nearby lymph nodes which after surgery was determined to include extra-nodal extension. She had a hemiglossectomy (about 60% removed) with free flap reconstruction in September 2025. Began radiation/chemo in mid-October and just finished the cycle. She’s also receiving immunotherapy

She had no known risk factors for this. Never smoked, careful about what she ate and drank, always exploring supplements she hoped would keep her healthy. So, we’ve both been stunned by her diagnosis.

Heart-broken to see the surgical devastation of her body and the suffering she’s enduring from the radiation. Scared that there’s a real chance I’m going to lose her before she’s even had time to grow old.

Hi Tobias,

Welcome to OCF and I am so sorry to hear about your recent diagnosis. I had similar stage 4 on my tongue out of nowhere five years ago. It is a long treatment and recovery process, many months or longer, and everybody responds differently and recovers differently. I can tell you there is hope. As you bounce around this site you will find many survivors that have been through this difficult path, and some of them 2 or 3 times. Yet, they find full lives out the other side. They inspire me.

As Chris and Mike advised, there is much to this process. And, it is often best to answer questions over time as it becomes overwhelming and hard to retain everything in one sitting. I will send you a private message with my cell number. Click on the envelop upper right of this screen to the left of your name and you should see private messages. Feel free to reach out to me via text or call.

A couple quick notes to reinforce what Chris and Mike said. Stay active, if just a one mile walk outside, so important to peace and recovery. Journal everything, whether written or video or audio notes. Journal your fears, your medical questions, your thoughts. I would wake up worried about whatever, jot it down, next thing, it would be 4 hours later and I found myself writing about my family, notes about growing up, things I wanted to make sure were shared with my loved ones no matter what. I would track my calories, weight, yoga, prayer sessions, you name it.

I am gonna cut myself off now and send the private note to you. Stay safe and keep the faith.

Nels

Hello Tobias,

There is no sugar coating it, what youre about to go through wont be easy. I really dont want to add anything thatll scare you, but hang in there. The other member who replied to your post gave you great advice. Eat as much as you can! If youre a thin guy or normal BMI, id strongly suggest you start packing on the calories now. You will lose a lot of weight which in turn will make youre recovery more difficult. So try eatting a lot of good calories and try packing on lean muscle as well. The surgery will be rough, but radiation will be worse. So do everything you can to pack on the weight! During Radiation, try and stay active no matter how poorly you feel. If you need more advice, send me DM and ill try to give you as honest and more accurate reply. Good Look!

Hello Tobbiasbiass,

Sorry to hear about your recent sudden unexpected cancer diagnosis, and a more advanced stage at that. Glad to hear they are moving aggressively with it.

My experience has been very minor thus far so I can't give much from personal experience, but there are many stalwart veterans on here who have been down the path you are embarking on.

Nels is frequently on here these days and will be able to give you some tips and perspective.

I can echo some of the stuff I've heard them say to others newly joining; He'll probably tell you to eat now, and eat all the fatty stuff you can to pack on the pounds, and enjoy your splurging on your meals, as getting enough calories post treatment is going to be a challenge, and key to recovery. Folks often lose weight, even if they are already fit going in, keeping muscle mass and all that can be tough.

How soon are your surgeries and treatment scheduled?

Do you have a significant other or close friend who lives with or near you and can help out? If not some kind of social service visiting nurse system may help.

Your English strikes me as a native English speaker and you mention Munich so I am imagining you are likely non-Native German, why I ask about whatever social support network you may have to assist once discharged from the Hospital (and to keep you company while in).

I'm waiting on the pathology report for an armpit lymph node needle biopsy that showed up hot on a PET/CT, but it is likely reactive, or at least an unrelated disease to my oral squamous cell carcinoma of my tongue. Watch, I'll be one of those one off cases.

Anyway, keep getting outdoors and doing whatever you do to relieve stress and anxiety the best you can.

Here is hoping and praying things move well for your treatment and recovery.

Best wishes,

R/
CQ

Also, sorry for the link I know mods on forums don’t usually like them. But it’s just easier than explaining everything in a huge post.

I would be grateful for any respond

Hi everyone,
I’m not really sure how to start this, so I’ll just be honest.
I found out about my cancer far too late. Stage 4. By the time the diagnosis came, it had already spread, and a lot of the treatment options I read about were no longer on the table for me. I’m trying to stay realistic know the statistics, I’ve heard the words “palliative,” “advanced,” and “non-curative” more times than I ever wanted to. Still, even with all of that, I’m hoping I can at least buy myself some more time. Time to be with the people I love. Time to say the things I still want to say. Time to just exist a little longer.
Since hearing the diagnosis, I’ve been reading everything I can about stage 4 cancer treatment, trying to understand what’s possible, even if the chances are small. I came across an article that gave me a bit of hope or at least curiosity about some newer approaches:
stage 4 cancer treatment
They mention things like targeted therapies, immunotherapy combinations, and methods like dendritic cell treatment or TACE. I don’t know how much of it applies to my situation, or if it’s just the kind of hope the internet sometimes gives you, but it made me wonder whether anyone here has actually tried any of these treatments.
Since I’m still new to all of this, I wanted to ask the people who have been fighting cancer for years the ones who know the reality of it better than any article ever could.
Have any of you looked into these newer methods? Did any of them actually help, even a little? Or were they just false hope? I’m not expecting miracles I’ve accepted that but if there’s something that could help me stay here a bit longer, I’d like to understand what’s real and what isn’t.
Thank you for letting me share this. I’m still trying to process everything, and hearing from people who’ve walked this road longer than I have would mean a lot.

Hi everyone,
I’m Tobias, and I’m new here definitely not under the circumstances I ever imagined, but I’m really grateful this community exists.
Earlier this month I was diagnosed with stage IV oral squamous cell carcinoma. The tumor is along the floor of my mouth and has reached the base of my tongue, and there are lymph nodes involved as well. Things moved fast after the biopsy. I’ve already met with the head & neck oncology team, and because of the advanced stage, the plan is pretty aggressive: a larger resection, an extensive neck dissection, and then radiation combined with chemo afterward. Hearing all of that laid out still doesn’t feel fully real like they’re talking about someone else.
I’m in my late 30s, otherwise healthy, so this hit me out of nowhere. Some moments I’m calm and focused, and the next minute the fear just sneaks up again. I’m especially worried about speech, swallowing, and how life will look after treatment. If anyone here has gone through stage IV oral cancer, or anything similar, I’d really appreciate any advice or just hearing your experience.
Outside of cancer life, I’m a graphic designer. I love photography, long coffee walks, and messing around with old guitars. I’m based in Munich, and honestly the only thing helping me stay grounded right now is getting outside for fresh air whenever my mind starts spinning.
I’m here to learn from people who’ve already walked this road. Thank you for having me, and I’m looking forward to getting to know some of you.

I just got my peg tube a week ago...I spoke with the nutritionist and she "does not suggest a blended diet because it clogs the tube and you cant taste it anyway" I (Im at Cleveland Clinic)...I figured that I would start with the formula and then find myself a nutritionist that a more open mind.

I am not happy with this formula...I feel like I can taste it in my mouth all day long...and I am having trouble getting the four meals in a day...3 is about all I can stomach and that is adding up to around 1155 cal/day. I'm a bigger woman, what a weight loss plan (and btw, I feel lousy)

So, my questions are if I start blending, I found Brian's recipe (one of them). How many cc's do you take at each "meal" Is there more than one recipe and am I ok doing bolus feedings with them. I am pretty miserable at the moment...Each "meal" just regurgitates, and I have never had that problem with food before...thanks in advance

Hello Bad_Kitty,

Glad to hear the oxycodone did the trick for you and at least made it so you could get some solid rest.

Sorry to hear that the biopsies all found more cancer spots; on the upside they “found” what was there and can now tailor your treatment plan accordingly.

Ditto with the bacterium they found and the new antibiotic.

Sorry the PET scan lit something in your lungs and they are now doing a biopsy there. Here is hoping it’s just a bacterial colony or something.

I go back to the hospital next Wednesday myself to get another CT guided needle biopsy of my armpit lymph node. Last one was non-diagnostic.

Anywho here is hoping the new antibiotics eradicate all the infection, the oxycodone keeps working well without making you nauseous, your radiation damage keeps healing, the cancer dies, and your treatment plan works great and you tolerate it all increasingly well.

Sincerely,

CQ

I can actually taste things, I just cannot physically move them very well because the cancer/infection has taken over one half of my tongue. I am on the 3rd day of my new antibiotics, and as they ravage my intestines, I think they’re finally helping the pain in my mouth! I still have the pain in my neck.
The next step for me is a biopsy of my lung (stupid PET scan), and chemo. My goal through all of this is just to be able to eat a Chipotle burrito.

Thanks for responding! I was so desperate!
As it turns out, I already see a palliative doctor, and I had a zoom appointment with him just a few days after this post! I had completely forgotten about it because I could not focus on anything other than pain. I was in tears during the appointment, and could barely speak. He explained to me that different opioids can trigger the reflex to vomit differently. He put me on Oxycodone, and I was so desperate for relief that I tried it! It worked! I slept for 6 full hours! I have not thrown up once!
Those little pills really came in handy when I got the biopsy done! Unfortunately for me, all the samples came back positive for cancer. They also contained MULTIPLE strains of bacteria, for which I am on 2 new antibiotics. And the new antibiotics make me nauseous… 🫠