Hi ChrisCQ,

Thank you for the reply. Yep that was me.

I actually have read through your posts a couple of times as it was one of the more detailed ones I could find about dysplastic situations. I appreciate you documenting it as it was very useful to see what others experiences have been with this.

That's kind of how I feel about this as well. I want to keep as much of my tongue as I can and since it could turn cancerous anyway, it's not a guarantee that surgery will help. It sucks because all cases evolve differently. They told me after the first biopsy they had no timeline for it getting worse if ever because it's different for everyone, but then I had recurrent pain and they did another biopsy and this time the results are severe vs moderate. Maybe that section has been worse for a while but it's hard to say if it has progressed in the last 4 months or if a different section was just worse than the other.

I did read about some of the trials. The annoying part for me is that I have been on metformin (one of the drugs they recommend) for over a decade due to PCOS. They also suggested low dose daily advil but that's about all. The current studies in my area are at capacity so I'm not able to join one but I do wonder what else they are testing. You're right. It is definitely a blind area when it comes to this. I also did ask about the laser treatment last time, actually due to your post, and they said they don't do that. I will ask again on Friday because I want to understand why she said no last time.

It is frustrating. I'm sorry you are dealing with this, too but thank you for the insights and reply.

Hello Kfisher,

I think I saw your post on Reddit…

I dont know if you read through my post thread at https://oralcancersupport.org/forum...al-dysplasia-of-tongue-lesion#Post199481

That kind of goes through where my dysplasia historical progression went. And what I was told and the questions I though about and asked and all that.

I was moderate then microinvasive cancer then mild dysplasia. Each time dysplastic margins.

I am in an odd spot as I can feel a small hard bump or ridge that my surgeon can’t.

If he could feel it I’d have him biopsy it.

Anyway more watchful waiting until he can feel what to cut out.

There is another thread too related to it.

My neck and swallowing is acting sore so a tad nervous; could just be middle age onset spring allergies now that I think about it.

Trying to keep as much tongue real estate as I can as long as I can…just feels like medical science is lacking on some key stuff in how this progression does work ; sometimes does sometimes doesn’t .

Any talk of an trials or new treatments for supressing ? I thought I read somewhere someone had a mild immunotherapy. One of my oral surgeons talked about laser or light ght therapy for dysplasia I think..

Hopefully you find peace and wise and good doctors explanation on how best to proceed in your specific scenario.

Mine sounds quite a bit more superficial than yours even.

Wishing you the best

Hello,

Back again. Not sure how active this place still is or if there is a better place to connect with people, but here I am.

I had SCC stage 1 in 2014. Had surgery and nodes removed and have been cancer NED since.

Made it 12 years. Well, things started to change symptom wise during Covid but things were still ok.

Then about 2 years ago is when I started having recurrent pain and ulcers in the same spot every single time so I started going in more frequently for checkups after being in the clear. In January of this year, I had my first biopsy since my diagnosis and it came back positive for moderate dysplasia. They said they wanted to keep a watchful eye on things. Had another biopsy a week ago because I kept having recurrent and consistent pain in the area that would not let up after having recurrent consistent canker sores in the same spot and this time it came back as "severe dysplasia". I'm thankful it's not cancerous but I don't know what this means. I have a follow up appointment on Friday.

Just wondering if anyone can give me an idea of what to expect? They gave me the option back in January of watchful waiting or surgery. But they were worried because they wanted to avoid removing more of
My tongue if they could saying that even though I healed ok last time, I might need speech therapy this time if scar tissue develops etc. I'm assuming this time they will want to do surgery because of the biopsy results to prevent a recurrence in the same area, but I am aware it doesn't mean it won't eventually turn into cancer anyway. Trying to see if anyone else has dealt with this almost a decade later?

Any suggestions or advice or even ideas of what questions to ask on Friday would be much appreciated.

Thank you all in advance.

God bless you and your angel brother. I appreciate your response. I have met with the social worker at Sloan and looked into American cancer society, cancer cares and every entity that I found. We earn too much to qualify. I am receiving social security. With the income of my wife, we don't qualify for assistance. I don't understand how people survive the financial impact of head and neck cancer due to the dental component. I need two separate surgeries. One for a spinal fusion since the tadiation fried by cervical bones and I already had my lower jaw replaced with my fibula. I need to figure out how I am going to be able to get through the surgeries before we lose our house. We have three kids we adopted through foster care that are special needs and a small ranch in Nj.

Anybody else go through this situation and were able to survive financially? I am blessed to be here to complain about this, I know and am grateful every day for the life that God has given me but when you can not afford to go out to the movies, or send thrn to a birthday party because we can't afford a gift, that's when I get depressed because my kids due without too.

Any ideas are appreciated. I can't locate anymore resources that I haven't applied to and been rejected. Thanks from the bottom of my heart and prayers for all of my fellow fighters.

Hello Legalfemme,

Sorry to hear of your overall situation; trying to recover and floundering financially.

There should be a social worker there at the hospital that you may be able to find some resources to help.

There also may be a support group attended by social workers.

I was only able to attend just the one and only cancer support group my brother was able to go to before he died of small cell lung cancer.

The social worker there had some good information and was resourceful in helping connect needs with solutions.

My brother never lived long enough to collect any of the social security he paid into his whole life; despite being terminal, you have to wait 6 months.

Perhaps a social security attorney? Get the ball rolling on that

We did set up a Go Fund me for he and his wife; I think that brought in about $15,000 from family and friends and a few strangers.

Pride can be a mean thing, of all the other stuff you can’t physically swallow, maybe consider letting go of some of your reluctance to let others help.


American Cancer Society may have some resources and ideas too.


Helping others is part of being human, and you said you’ve always been on the giving end, time to be open to receive a bit perhaps?

I hope you find some good solutions,
peace, pain relief, rest and healing.

Congratulations on the two times beating the cancer back.

There is a seperate forum for finances; you could browse through that for more ideas.

I know I seem ungrateful. I know that I should just be happy to have survived Stage IV Head and Neck Cancer TWICE but I am now living in a new state of constant anxiety and fear because I am about to lose my house due to the endless medica bills.

I need some real life help and suggestions because I have three kids, am disabled and absolutely am drowning in debt and I still need two more surgeries. We qualify for nothing from the government because my wife is employed so we are lower middle class, living in a small ranch house and literally can't afford to pay the bills and I am desperate. I can't even afford one of the prescriptions for mouth pain since it costs 80 for two ounces. I have applied to every entity I have found and we earn too much to qualify. We dont six figures… not even close, but right now I owe over 2000 to Sloan and can't afford the dental work on my top jaw teeth so I can get the abutment. I applied to Sloan and over 40 different agencies and non profit. Nothing.

I have always given back to others. Always gave more than I could afford to various entities and served on board of non profits. I never thought I would be in this position. I am left ashamed and scared and honestly feel lost. What have other people do in this position? I have no one close to me that could help and we have taken home equity loans and private loans already and credit cards are now insurmountable.

I do not want to beg the public or make a public appeal at all. Apart from winning the lotto, does anyone want to share a strategy to follow to try and get myself and my family out of the big black hole we are going down. I am struggling every single day just to function with my speech and swallowing and trismus, but the financial part of this is painful as well. It really really is. Thanks to any of my fellow cancer warriors who took the time to read my post. I don't know who else to ask who would understand.

Hello! I’m 3 years post op, radiation and chemo for squamous cell carcinoma stage 4. I’m still experiencing swelling on my left side of cheek, jaw and tongue swelling. The tongue is swollen and causing scalloped tongue against my teeth and causing an indented tongue pain that no doctor or dentist cannot seem to help with. Any suggestions?

One more thread that seems pertinent:

https://oralcancersupport.org/forums/ubbthreads.php/topics/184457/trismus-and-teeth#Post184457

These folks mentioned botox shots, physical therapy, and a procedure to cut the muscle (last resort I am sure...)

https://oralcancersupport.org/forums/ubbthreads.php/topics/183983/new-with-trismus#Post183983

Hello Barbaravs,

I lack any experience with that.

I did a quick search, after logging in, (the search feature is not available if you are not logged in to your account when browsing the forums).

https://oralcancersupport.org/forums/ubbthreads.php/topics/200246/trismus-treatment#Post200246 (not sure if hyperlinks to forum posts work, TBT)

Is one where some folks were using tongue depressors to stretch the jaws open, going from one to two to three of them stacked at a time.

I guess they have devices for the stretching, but the one person was so severe they could not get the device in, so they had to start with tongue depressors.

You may have more luck browsing through the results of your own search of the forums for "Trismus" in the search window in the upper right corner of the screen.

It seems more folks are active on the Reddit forums for Head and Neck Cancer, in terms of getting a lot of responses, quicker.

The forums here on OCF have more depth and are more searchable.

Best wishes for a solution that works for your husband.

Your husband's situation sounds like a mirror image of me. I still have occasional dry mouth issues and have adapted to that situation. On the other hand I find that the excessive saliva is even more annoying. I have to be careful when directing verbal conversation to someone as with no warning I start dispensing excessive saliva which hits the person I am speaking with. I have yet come across anyone who has an answer for this problem.

William Dozier
Bremen, GA

Hi Roxie,

Wow, that is impressive how fast it all came together. You are obviously a young 83 to come through all that so well! Wonderful. So glad you joined the forum. Please keep us up to date on your progress.

Stay safe and keep the faith,
Nels

I am new to this forum and am looking for information from others who have experienced severe Trismus post radiation therapy.
My husband had his initial diagnosis of squamous cell Ca on his upper jaw and had reconstruction using his fibula in 2022, followed by radiation therapy. The bone replacement failed and was redone with his other fibula in 2024. He then had 2 follow up procedures due to progressive tightening of his mouth which have been unsuccessful.
Has anyone had success with this issue. We thank you in advance for any input/suggestions/experience.

My obturator does not fit correctly and I have had many adjustments, Right now I am trying to live with it till May 27 when I go back to U of M. I see the dentist and a NP who works with my surgeon. It has been 3 mo. since my last visit and I tried to get in sooner but it was impossible. I have sore spots in my mouth from the obturator rubbing. I have trouble swallowing and have had SLP for many sessions and my speech is not what I remember but it changes. I have excess saliva and thick mucus from my sinus. Radiation caused these problems but not right away. I cannot eat meat or bread without it getting stuck under the obturator. Have put life on hold but who needs a dinner out or a family holiday. Food is not everything. I am alive.I do have to drink after every bite and then pray that nothing comes out of my nose.

The ritual after every meal or snack is rinse my mouth out, remove obturator, brush teeth and gums and use an oral swab to make sure every bit of food is out, Then final rinse with mouthwash or peroxide oral rinse.

I have trouble maintaining weight after losing more than 30 lbs.

I was wondering if anyone in the OCF user base has had any results with the experimental and clinical trial Multi Cancer Early Detection blood test ("liquid biopsy")?

They are not yet FDA approved and are available for some folks in trial form, the one trial I was almost enrolled in, requires that you be no evidence of disease for three years before you can participate, and I am only two years out. So I was disqualified by the study coordinator. I asked if I could just pay to have it done, and they referred me to another clinic in the same CCC that does it as a new kind of program they are investigating, apart from the formal clinical trial.

I've had some concerns with recurrence with small little spots and what not that my surgeon can't feel, some weird stuff on my PET/CT, kind of moderately FDG uptake on a cluster of nodes in my armpit, needle biopsy came back clean.

Recently Have some same right side neck "fullness", without any palpable lymph nodes at all in my neck, but the asymmetry was noticed by the MCED research oncologist I saw just before doing the blood draw.

There are MANY problems that are yet to be worked out with these types of test, but I am a BIG supporter of pushing the envelope of new technologies for early detection and early intervention. So a big part of doing this was the oncologist giving a big fat disclaimer on how useful these currently are. Although for head and neck cancers they show some good promise for the future. She was the first oncologist I've ever met with, as my treatment, thus far, has been completely surgical.

If I recall correctly from what she told me there are other studies that military Veterans can enroll in with regard to these kinds of trials, and get free results (there are insurance implications for some of the genetic testing and liquid biopsy testings-just have to do your homework, I am already a cancer patient, with established life insurance, if someone's life/health insurance status was "fluid" or uncertain you'd want to be aware of those considerations before genetic testing for mutations like BRCA. I should clarify too, the liquid biopsy type testing isn't looking at your genetics to see if you have mutations that make you pre-disposed to develop cancer, it's looking for actual fragments of tumor DNA. Two different kinds of testing. I had both types done during my blood draw yesterday. The personal DNA genetic mutation screening for family inherited propensities to develop cancer, that one I think maybe is FDA validated, and many insurance companies will pay for it if clinically indicated based on family history etc...

She did think follow up imagery regardless of if any cancer DNA signal is found in the "liquid biopsy" (looking for fragments of tumor DNA circulation in the blood, much more likely to be found with invasive and tumors that are just about to go metastatic then micro invasive tumors like mine, IF that was the actually root primary and I didn't have an occult primary somewhere else, highly unlikely.)

So in about three weeks, before my next surgical follow up, we should have results. If there is any concerning "signal" detected, that's going to prompt a "no stone left un-turned" kind of approach, not that I or my doctors have really left any stones un-turned thus far anyway.

We did forgo any neck dissection as my tumor was microinvasive and small. Looking at past literature there was differing opinions on doing a neck dissection for sentinal lymph node biopsy, with such small early cancers. I agreed with my surgeon that the cost/risk/benefit ratio of doing that in my case was not indicating that at all, and I think the consensus of surgeons are shifting towards that approach, with the recognition sometimes occult lymph node metastasis can occur even with small tumors caught early, albeit with increasing rarity the earlier in the progression to actual cancer.

If no "signal" is detected, still standard of care follow up appointments, now of decreasing frequency so long as the tiny little bump stays the same, and whatever is going on with my right neck muscle area goes away, and probably one final CT to see if those lymph nodes that lit on the PET have shrunk back down or at least not gotten larger, or new nodes.

So this test I agreed to pay out of pocket, as its of research interest to me, and I want to kind of push the envelope forward for emerging technologies to find cancer earlier.

Hopefully some day in the future, this technology will be perfected and people could get a wide range of cancers screened, affordably, accurately with a blood test.

If my surgeon is ever able to feel and appreciate the tiny little bump I can feel, below my tumor scar about 1 cm, and smaller than the original tumor "zit" essentially, then I'd say for sure lets get that biopsied. Or if it gets persistantly painful, or changes in any other way.

Right now there is no reference point, no target for him to excise really. Would not want to go under another surgery only to have the bump still be there, which I am sure is why my surgeon is like we'll keep an eye on this but it's not alarming to him at all.

He thinks it may just be deformation from the tongue re-shaping after scar tissue, to me it seems too far beneath the scar, but explained the internal "tissue" below the "skin" of the scar was disturbed in a wider field in larger dimensions than the resulting scar, drawing a diagram of the football shape excision and explaining internal stitches a bit. So we are watching it very closely, normally by now I'd probably only see him twice a year maybe annually soon.

No further cancer was found during the partial glossectomy, just more, mild grade this time, dysplasia. That dysplasia was also found on the surgical margins. (I wonder how often with tongue tumors dysplastic margins are found, more than half the time?)

It's just crazy as I was dotting all my i's and crossing all my t's all these years, and my brother thinks he had a recurrent torn rotator cuff in his shoulder from a work injury this past fall.

Jan 2026 he gets diagnosed small cell lung cancer, extensive stage, with bone metastasis and liver, two rounds of chemo, palliative radiation to his shoulder and spine, and in less the three months he is gone.

So feel like I am spoiled to have the level of early intervention, and diagnosis and follow up, and had all those fears of progression, and he was already in way advanced stage small cell lung cancer (one of the worst, I now know a lot more about that cancer than I did before...ugh...) when he was first diagnosed. Even from the start the therapy was not curative but intended to hopefully prolong his life and quality of life. Some form of survivor guilt or whatever. I am very fortunate.

Such is life.

Keep up the good fight folks, and lets keep pushing the envelope for new early detection, interventions, treatments, technologies and the like forward.

Just an observation:

It seems over the past few years the number of users posting regularly in these forums is on the decline.

I really think this bulletin board style forum is superior to most of the other social media type apps for keeping long term threads of useful knowledge more easily searchable or able to be organized.

My brother was just recently diagnosed with small cell lung cancer, extensive stage with bone and liver metastasis and died within three months of diagnosis, and I was lamenting that none of the various resources I could find were as well put together as OCF's forums.

Doing one's "homework" was more challenging I thought.

I ended up joining some facebook user groups for lung cancer, and small cell lung cancer specifically and some reddit groups of the same type.

I've posted a lot of anecdotal, my experience only, type stuff on here for sure, but those other forums have lots of superficial anecdotal experiences and were lacking on substance.

Instead of a static forum post with a static thread, easily found and easily searched, the reddit post or facebook group posts were more a feed type situations where new posts get promoted and get some interaction from those with experience in the group, but then to other users kind of get lost in the noise.

I did join at least on Reddit head and neck group, and I honestly can't recall if I've joined a similar group on Facebook for Oral and/or Head and Neck Cancers.

I do know the Reddit group for oral cancer/ Head and Neck Cancer is very active with new threads and response posts daily or nearly so.

I've been meaning to drop some references to OCF and links to those groups, but am not sure how effective that may be to pointing people to the excellent resources on database of the really good information from the patient perspective gathered here. There simply is unmatched breadth and depth of experiences and here on the OCF forums.

Not sure if the support staff behind the scenes is purely voluntary, or what thoughts the leadership may have regarding kind of proactively informing folks in those other app/media locations of the existence of this very useful resource.

Just kind of tossing it out there for other's thoughts.

R/
CQ

Just had my second surgery. The surgeon thinks it's PVL but the pathology will tell me more in the next couple of weeks.

Hey there, Radiation really messed me up. I did not have swallowing issues until 10 months post radiation I had speech and swallowing therapy for months. Now I have exercises that I am supposed to do for the rest of my life. I also have very thick mucus from the radiation and this collects under the obturator. I just don't know. I am glad to be alive but this is not what I bargained for.

Hi, I am going on two years survival if all goes well in May UM visit and scope.
I have had so much trouble with my obturator. I have had so many adjustments and they only last a few days. I was hoping to find a genuine positive thought on here.
I have food getting under mine and also liquids coming out my nose. I have avoided going out to dinner for almost 2 years.
I don't like holidays any more. Every meal means almost a half hour cleaning my mouth and the obturator. When my dentist did an adjustment to it, she said it was very heavy.
I don't have anything to compare it too.
This obturator has only been a part of me since last Sept.2025. My dentist at UM said everyone has a lot of adjustments.

If you find someone with few complaints, please send them my way. I don't even know where to look for someone to make a new one for me. I will be going to UM until 5 years are up.

I am so glad I found this site.

I am 83 years old. I am a young 83, diagnosed in March of 2024. I had surgery May 7, 2024 at University of Michigan. I was and am a non smoker, did not drink alcohol since I was very young, have not done recreational drugs.

Believe me this diagnosis of SSC was so shocking. I was at my dentist getting a crown placed. Prep had been January 2024. My dentist was on maternity leave and a retired dentist was filling in. He looked in my mouth and went out of the room. When h came back, he said, I want someone else to look in your mouth, an oral surgeon and you need to go there right now. I had no idea what was going on. I was totally confused.

Anyway, I drove 25 miles to see the oral surgeon who said I needed to pack a bag and get to U of M immediately. Go to Emergency Dept and tell them something is growing in my mouth and needs to be seen right away. U of M is over 2 hours south of where we live.


We went to Ann Arbor the next day, walked in and was seen immediately. People wait for months to get an appointment there. Anyway, I was examined right away, in the hallway, as they were packed. I had the biopsy, right then, Resident walked it to the lab and waited and brought the results to me. When he said "I don't want to tell you this" I said I already know.

I am trying to remember what all happened but in reality it was a whirlwind 2 months. Tests and more tests and appointments.

Surgery May 7, 2024 The beginning of my long journey.

Diagnosis:
Squamous Cell Carcinoma of Oral Cavity

Ne

Post-oncology surgery with radiation, looking for experience in lower lip reconstruction, oral fitness rehabilitation, fascia lata sling in the irradiated field. Looking for excellent surgeons in Europe who know how to perform lip reconstruction either by slinging from the forearm, hand or pelvis or by slinging from the tendon or face.I am after surgery to remove a cancerous lesion and during the surgery they took tissue from the floor of the mouth and attached a small part of the tongue to the floor of the mouth, so facial reconstructive surgery is required. For oral reconstruction and lower lip lift