Hello Gamjagirl,

Welcome to OCF and I am so sorry to read of your father's cancer. You should be able to find tons of good info by searching on different key words under treatment. I went through surgery, somewhat similar to your father but simpler, and radiation about five years ago. Regarding radiation - eat as much as you can to keep your weight up. The first 2-3 weeks should be relatively normal regarding food flavors. But, once they change, it won't start to get better until a few weeks after your last dose of radiation due to the cumulative effect of the treatment. Get a vitamix (think discount is still available if purchased through our link) or similar to blend foods to make it easier to get calories. The list of foods that tasted normal or at least not terrible got really short for me - scrambled eggs, green beans, french toast, pancakes, vanilla pudding, vanilla ice cream, avocados, vanilla protein drinks, simple soups...but everyone seems different. You keep trying different stuff. I used to blend high calorie protein drinks with ice cream and avocados and whatever else was around. Best to track your calories and shoot for 2500 cal/day or whatever the doctor recommends. I had a hard time hitting that number every day and i focused hard on it. My starting radiation treatment weight was 160 and low a week or so after was 145. I am 5'11' so not much meat on me to start.

I also recommend keeping active such as walking, biking, light yoga, light exercise and making a schedule of daily touches with loved ones. It really helped my mood and kept me motivated. Journaling was powerful for me. I often got hard on myself wondering why I wasn't improving. I would back up in my journal and realize I had come a lot farther than I thought. Recovery from radiation is much slower than from surgery. I would see improvement every day or two after surgery. After radiation, it was multiple weeks to see it. Best wishes for a smooth treatment and keep us updated.

Stay safe and keep the faith,
Nels

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery (neck dissection) that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello Danbert, steve1 and JamesD,

I find it hard sometimes to discern between survivor guilt, which I have recognized it, and living life to its fullest given my daily side effects since caner free from HPV p16 positive in the spring of 2024. Lots of radiation to cure the cancer however since that ended in August/2024 I have terrible side effects of a dry mouth or xeorstomia and absolutely no appetite. I am currently going daily for two hours for hyperbaric oxygen Rx after reading it was successful for a patient with the same cancer and side effects from the US and the Mayo Clinic. I am slowly regaining my saliva after just over 30 sessions and going for 50. In all this survival band "beating" cancer or it going into remission and rejoicing where does quality of life come in. To me it isn't just not dying that counts but what is your QUALITY of life after surviving it. Any thoughts.

I'm not new, formerly poster Ray1971 but unable to get into my account. So here I am...still kicking at 54!

I'm sure members have come and gone over the years--but hope everyone is doing well!

For those that are just going through these times, stay strong. I've been clean for 17 years.

Ray

New here and realizing I should have put my previous message in this forum column, so please forgive the redundancy:

Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

Hello!
Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

I had HPV p16 one year ago and six weeks of radiation ending the first week of August/2024. Very few chemo, maybe 6. I could not get rid of my dry mouth, no saliva and no appetite months and months later (Xerostomia). I heard about HBO Rx from someone who had the same cancer and side effects and he swore by HBO or hyperbaric oxygen. I go M-F for two hours in a chamber once a day. I am at around 30 sessions today and slowly I am noticing my throat is less constricted and I can swallow meds as there must be more saliva active. One oncologist on a consult before this said 3 of my 4 saliva glands were damaged and not working from the radiation. Has anyone tried hyperbaric Rx for radiation side effects?

I'm a few months late, but my husband had a partial maxillectomy to remove his palate in 2013. He has also been experiencing issues with his obturator. The fit is good (he says), very tight, but his molars on either side are loose and rotting. Either molar could fall out at any time, leaving him with no anchor to hold the obturator. If it happens, I guess temporary denture glue could help for a bit, but having any gaps drives him crazy. Gaps cause him issues with swallowing, speaking, having beverages or moist foods drip out through his nose...

He's been having a hell of a time finding anyone willing to do the flap procedure, or put in dental implants, or any procedure, to help. Radiation history is likely why, but I'm not sure. Two of his old specialists have died, others moved, one of his original surgeons refuses to do flap procedures anymore and highly recommends not to do it, and gave us gruesome examples he's seen first-hand, out of very genuine compassion. New contacts we've reach out to sound unfamiliar but 'willing to try' different surgical options (yikes & what the heck).

I wish I had something to offer you, right now. We'll have to travel to a find somebody who knows what to do. Might take months to get this sorted, but if you buzz back sometime, I'll update. If he could find a way to make an obturator work without flap surgery and without molars, he absolutely would do that.

Hi I’m recently diagnosed with stage 3 tonsil cancer with Mets to lymph node. I’ve had 2 of 6 Cispan treatments and 11 of 35 daily radiation treats. A couple days ago I started the lidocaine mouthwash/ rinse and am not having much luck with the mouth/throat pain. I’m not sure if it’s a technique thing like swishing and or gargling or kind of soaking when using the rinse or if there are more effective things, any ideas, suggestions or expectations of more things to come that’s the hardest part for me is knowing what to expect so I can prepare myself. So I’m not in a constant state of wondering what’s coming next? Any thoughts or input would be greatly appreciated thank you.

Hi CrisCQ,
I'm not sure I'm much help. I have only had moderate dysplasia biopsy and then a very partial removal with clean margins and some biopsies since then. I too feel that the foliate papillae are larger and redder since the dysplasia was found and surgery was completed. I have asked about them and told they are normal as well but they definitely seemed enlarged and I too wondered about more possible dysplasia or something else going on. I have tenderness still in the area of the tongue removal and some leukoplakia areas that have since formed since surgery and biopsy. I am working with an oral medicine doctor along with my ENT and is looking at this and says its probably not normal I am feeling pain in the area so he will see me in a month.
but like you the foliate papillae have no pain just look red and enlarged. Let me know if you find out more or get a biopsy, I am curious. It can definitely be worrisome. Wishing you well.

Huh, I can't believe I did not add in this thread an update after my general anesthesia very partial glossectomy.

It's in the other thread I believe.

Anyway last February (2024) an ENT Onconology Surgeon did a very minor partial glossectomy around the biopsy site, under general anesthesia, to get sufficient margins around where the cancer was found and to also look for other cancer.

He did a throat scope as well.

Nothing of concern was found on the throat scope.

Pathology on the excised tongue showed no further cancer, but there was more dysplasia, and if I recall correctly, it again extended to the edges of the tissue, and I believe they termed it "low grade" dysplasia (and I think some folks use low grade to include minor and moderate dysplasia).

He did note some patchy white leukoplakia I believe in the retromolar trigone that I had asked about, but noted it was more consistent with Wickham striae, and was not currently concerning to him, although he'd keep careful attention to it on follow ups.

The first year post surgery it was follow ups every couple months after it healed.

This second year it is more every 3 months (sooner if something develops of course, they'd get me right in, and I send them pictures and ask questions as they arise via text messages on the patient portal, had a few odd cankers that erupted suddenly and then slowly healed, so far nothing has required an unscheduled urgent visit).

The one tiny spot, that I thought may have been (and may still be) a suture scar, still remains. A white tiny bump, way smaller than the pimple. Painless, and not changing. I need to remember to ask if that's normal for a suture scar like that to become permanent.

It doesn't bother me, it's just there.

A few more patchy leukoplakias, one below the scar(s).

The surgeon doesn't think it's necessary to biopsy those as of yet, until at least they become palpable to him. He is happy to do it, if I request it at any point.

He thinks in all liklihood, at worse it would likely just show more dysplasia, and we had that discussion about chasing dysplasia can be a loosing game, especially if it is scarring resulting from sutures and trauma to the tongue during surgery, and he agreed with the other oral surgeons.

We discuss it and he looks at all the abnormalities each visit.

I see him again in a week or two here shortly.

The area forward of the tongue still has that patch of tissue that "blanches" when my tongue is stretched out at time (capillary bleaching they believe, but oddly to me just that oval patch that does it, right adjacent to the scars, abutting right up to it). It also has a visibly smoother texture appearance, and feels kind of rubbery when you slide your finger acrross it. The rest of the tongue in that area, with saliva, the finger just glides over the tongue skin, even over the scars. That blanching oval region, my finger kind of grabs like a squeaky windshield wiper blade on a windshield. Kind of grabs and releases, grabs and releases, but the texture is smooth. Just odd observation. It is more sensitive to touch than all the other surrounding areas too. I can rub the scars vigorously and there is no discomfort. Rubbing this other vigorously isn't painful per se, just uncomfortable. Forward of that area there is a small short "ridge", that is about midline. That too is sensitive in a similar manner.

At times that ridge is more prominent. I do not believe it is merely from the fitting of the tongue to the space between your upper and lower teeth, but it does approximate that position, I think. I can't force my tongue to rub on my teeth in anyway that is the lest bit uncomfortable, teeth closed or opened.

One thing about documenting this, is if I did not, I could easily forget that this specific area IS NOT scar from any of the other procedures.

I'll need to remember to ask him about the area to the back of the scar, deeper. It looks to me as if there is some leukoplakia extending from the scar back as far as I can see in the mirror. I am pretty sure I could easily see the entire sutured area in the mirror and it stopped well short of the limits of what I could see.

It would be nice if medical science could develop Star Trek level PET/CT scans that could detect microscopic, or at least sub-millimeter tumors. I am willing to play guinea pig, if they want to test out any new techniques in imagery!

As I understand it sub-centimeter PET/CT is still a goal too far, and it seems as if my excised tumor, quite likely would not have shown on a scan? (I had an unrealistic expectation of what current PET/CT is likely to show)

So all these other minor lesions, it's this waiting game, and trying to figure out to let things ride, vs. keep biopsying.

So that's an update after the very minor partial glossectomy pathology results and where things are now.

I am another never smoker, only tried chewing tobacco like twice as a teenager 3 decades ago, very occasional (3-4 times a year) social drinker, 1-3 drinks typically.

I did used to use alcohol containing mouthwashes, quite a lot in my 20's and 30's. That's the only risk factor we've ID'd, in my more or less idiopathic generation of disease.

Have not used the alcohol containing mouth washes since, just tooth paste for me at the moment.

R/
CQ

I spoke to a VA patient advocate today i will be able to work with MD Anderson, if I get a diagnosis. Everything is hinged on the results of the consultation. I asked the patient advocate about the timeframe for the consultation, he called around and said the are doing additional tests and stains and there is no timeframe just be patient. I hate when they say that, but I guess it’s the only thing to do.

Hello Johnny1985,

Semper Fidelis Army guy…USMC guy here.

MD Anderson in Houston TX is likely the worlds best CCC, especially for oral.

I know TX is a huge state, but put it this way, if my cancer was ever some rare or exotic thing, I’d be seeing about medical travel to TX to get treatment there.

That makes sense of your VA records notes being how they “half notified” you.

I was not able to get worked up through the VA as I am not 100%, and don’t qualify for dental, but I believe my VA dermatologist could have referred me out to a non-VA oral surgeon and through the “community care” or whatever it’s called program had it covered via the VA.

It’s possible, just trickier.

You may want to reach out to a CCC and ask them if they have a VA liason or are familiar with using the community care and trying to figure that out.

The VA can be great, I was able to see the UC San Diego Chief of Neurosurgery at the VA in La Jolla CA a decade ago, and that was in the normal VA appointment process. He was just my neurosurgery consult right there in the VA Hospital. I was amazed!

UCSD San Diego and VA San Diego share a medical campus there in La Jolla.


Since then my primary care doctor in the VA seems to change annually…but I have had the same dermatologist for the past 6 years.

It’s funny as the first biopsies my VA dermatologist did ended up being sent to my states flagship teaching hospital pathology as the VA did not at that time have a regional pathologist on staff. That ended up being the same CCC and pathology department that would diagnose my tongue cancer later through the civilian system.

Although this CCC did not have an oral pathologist (another reason I moved to the nearer CCC) either, and I had actually asked about having my biopsies sent to the oral pathology lab my first oral surgeon had insisted on using. They could have sent it for a second opinion AFTER their in house CCC pathology department had issued their report.

But it came back cancer, and I felt an error towards over-diagnosis was unlikely and better then an under-diagnosis and missing an early opportunity for early treatment as it’d get me into treatment as an established cancer patient early.

Since then though I believe all my post cancer diagnoses pathologist have not been oral pathologist, although my current CCC has oral pathologist on staff, and actually has the lady who is one of the chief oral pathologists of the first oral pathology lab, literally authored one of the top oral pathology textbooks, and signed my initial oral pathology report when it was potentially pre-cancerous dysplasia:

My current CCC ENT Surgeon knows her well and teaches with her and works with her, but had 100% confidence in the regular pathologist (BOTH of them CCC pathologists) getting my case right, and he is a DMD/MD who started in Dentistry to Oral Surgery to ENT to Oncology ENT sub-specialization.

So it’s funny it has only been my first biopsy that went to oral pathology, at least in terms of who signed the pathology report, and for the later biopsies there are no notes indicating consultation with an oral pathologist.

I believe my CCC has it streamlined were their regular pathologist makes the call for clear cut cases, and then if something is iffy they consult with oral pathologist, but still all in house in the same lab system. I was a bit surprised they did it that way.



This past year my skin (not tongue) biopsies were sent to a VA pathologist as they recently hired a regional pathologist.

So now the situation is a bit more understandable to me.

All of my oral surgery stuff was worked up outside the VA.

I probably could, now with a cancer diagnosis, get treated someway via the VA but we have good regiular insurance too.

I do remember that my first oral surgery consult was a wierd tricky dance just between medical and dental insurance.

Once the biopsy was done it kicked over to the medical insurance, but getting to the oral surgeon initially was …odd.

So the VA system adds another layer of complexity.

But I think they have greatly improved the programs allowing you access to care outside the VA, especially for complex issues.

A veteran service agency may be able to help you figure out how to go about using those benefits and arranging transportation and such.

Good luck, best wishes, keep the faith and please keep us up to speed on how things work out for you.

Sincerely,

Chris

Thanks for the reply and thanks for the kind words. I’m a fully disabled army veteran. I get a large majority of my hospital care through the VA Hospital Shreveport Louisiana, I live in a small town in north Texas. The way I found out about the referral from the in house pathologist to the oral pathologist specialist, was I got a notification on my medical records. I opened the email and read the notes. The record only stated consultation to oral pathologist and suspected cancer please expedite. Final report to follow after consultation. My initial dentist really didn’t think it was anything serious it took months for him to send me to an oral surgeon. Now I’m feeling like it should have happened sooner. I will look up the ccc, and maybe get a second opinion if the biopsy ever comes back. Thanks again for the reply!

Hello Johnny 1985,

Welcome to the forums, and sorry to hear you are experiencing a possible cancer scare.

My cancer diagnosis pathology report took almost 3 weeks, as I recall. I believe my biopsy was like Dec 15 and the doctor called me January 2nd.

That was done a Comprehensive Cancer Center (CCC) hospital, with in house pathology.

It seems a tad odd they would the say the pathologist was sending it to another "specialist" and then tell you it was because they suspected cancer. Sorry for that extra layer of anxiety.

Seems like if they wanted to hold of an a questionable diagnosis they would not bother telling you anything until it was definitive.

Here is hoping the "specialist" can say it is something besides cancer.

5 years before my cancer diagnosis, the oral surgeon who took my first ever biopsy, he was himself an oral cancer survivor, whom his regular dentist found his jaw cancer on a regular dental X-Ray for regular periodic dental maintenance.

Anyway that Oral Surgeon, who had his own stand alone medical practice, was insistent that my biopsy tissue sample be sent to a very specific oral pathology center, he didn't care if my insurance would pay or not, it was this one or nothing. (Apparently he had bad experiences with other pathology labs, and new this other one from his personal cancer experience and his professional practice experience.)

I was like, sure Doc, whatever you say, we have a few extra nickels to rub together, and it wasn't going to be massively expensive even in worse case scenario if we had to pay it all out of pocket. (Our insurance ended up covering it just fine).

He did not think the small white lesion was anything to be concerned about, but did it as it had not healed in a few months and had already been past the standard 2-3 weeks, if it doesn't heal biopsy it rule of thumb.

This highly regarded pathology lab, sent the report back and it said the tissue contained moderate epithelial dysplasia, with a whole bunch of diagnostic descriptions and justifications.

That 1st oral surgeon then sent me out to another oral surgeon who specialized in cancer and pre-cancerous conditions.

If you are in the US, I would start researching your nearest Comprehensive Cancer Center (CCC) and maybe even call their patient coordinators now (assuming you are not currently being treated at a CCC if they are sending the pathology out for a second opinion...) and tell them what is going on to kind of grease the skids a little in preparation for the biopsy report, which if they are saying maybe is cancer, and are doing an in house 2nd opinion, you may want your own 3rd opinion even if "the specialist" says it is NOT cancer.

If it is something that is potentially pre-cancerous, I'd still see if a CCC could get you set up as an established patient.

The CCC that found my cancer is a fine institution, and the best one in my state, but there is a closer one to me in our neighboring state, that has a much stronger oral cancer program, more depth of field, and access to truly world class technology, expertise, research, and treatments.

My CCC Oral surgeon who did the 2nd biopsy that found the cancer, when he called me to tell me the lesion, that he also did not suspect was anything to be worried about, was actually cancer, he was very gracious and happy to refer me out to this other Hospital system. He was going to have me do a consult with his in house ENT Oncology Surgeon to get wider margins around the tumor scar and scope my throat and all that, and I said if it was all right, I had already in my mind decided if that I ever received an actual oral cancer diagnosis I'd seek treatment at this other place.

Thankfully I was able to meet with the new hospitals Oncology ENT surgeon I think within 48 hours of that phone call.

One of the first things he did was send for the pathology cassettes (slides or whatever they are called, the fixed specimens...) so that THEIR in house pathology could lay eyes on the tissue and see for themselves what they thought before scheduling me for general surgery for a (very) partial glossectomy.

The tissue was sent to this other CCC's pathology lab, and they concurred with the micro-invasive squamous cell carcinoma diagnosis. I think I had to wait like 45 days for the surgery to be scheduled. That was a LONNNNNNG 45 days.

Sorry the waiting sucks, the not knowing sucks, but as many of the OCF veterans around here will remind us "It's not cancer until it's cancer", and while they rattled your nerves telling you they are sending it to someone else because they think it likely is, they still have not given you the definitive diagnosis yet.

Again, if I were you, I'd be like if this is such a photo finish pathology call, let's get a CCC pathologist and CCC Oral Surgeon or ENT Surgeon for a second opinion, and to follow you closely if it's something other than a totally benign condition.

The CCC may even decide to order imagery or to do another type of biopsy in order to make a diagnosis.

I hope that helps, and that those options are available to you and are convenient enough to make happen.

Best wishes,

Sincerely,

Chris

My dentist has been monitoring a growth in my right jaw for months. He first told me to change my toothpaste and mouthwash, then prescribed medicated mouth wash, then steroids which I had to stop taking because I have diabetes and it was spiking my sugar. Three weeks ago I had two punch biopsy’s taken out of my right lower jaw. After the first week I got an update saying the pathologist is sending my biopsy to a specialist for suspected cancer. I’ve been waiting… today the doctor called and canceled our an appointment and scheduled it for another two weeks out saying that the results are not ready and won’t be. I’m freaking out and wonder if anyone else had to wait this long for results?

Hi. I am a caregiver for someone who had almost the same situation as you. She lost more teeth and also had radiation. She was told to come for scans every 3 months. She already had a recurrence well before the 1 year mark so we are back in treatment now (at MD Anderson). It does sound odd to me. You should get a second opinion, I would think. Though others here have a lot more knowledge and experience. This is my first post, so I am sorry for any breach of etiquette etc.
Kristen

Just a bit more info: She had clear margins and all of her scans were clear. They just decided to biopsy something that looked questionable and it ended up being cancer.