Hi Thelma,

Welcome to OCF and thank you for reaching out. I am sorry to hear of your difficulties in recovery. I had surgery (half tongue replaced) and radiation in 2020. It took many months for my tongue swelling to come down but not three years. It will never be normal again but what you are describing does sound like you should keep finding doctors to look at it.

Can you find another medical team to get a second opinion? Are you near MD Anderson? They are one of the most highly respected cancer centers.

Please keep us updated, stay safe, and keep the faith,
Nels

Hi Patrick,

Welcome to OCF and thank you for sharing your experience. I am sorry to hear of the difficulties in your recovery. Although I did not go through the same procedure (I had 50% of my tongue removed, rebuilt, and radiation, no chemo in 2020), I can share that my recovery took many months and food and flavors took years to come back. My saliva has never fully recovered. I do remember early months waking up with a completely dry mouth and it felt like my tongue was Velcro'd to the roof of my mouth.

Journaling, both written and video, helped me. I would get down thinking my recovery was not improving, then I would watch an old video or read my old entries and realize I had come a lot farther than I thought. I did have to learn to look month to month as I got further out from treatment.

Please keep us up to date, stay safe, and keep the faith.

Nels

My tumor was base of tounge moving down towards but not to the vocal cords. I had a trach July 15 2025. 6 chemos (1 a week) and 35 radiation (5 a week) started September. Trach was removed Jan. 15 2026. A persistant sore was at the top of the throat way back above the tumor site. ENT did a harsh biopsy back there in Jan. that set back reovery. 175 pounds to 130, up to 140 before the biopsy, down to 120, nnot back to 150.

Different tastes buds have been waking up. Salt is very difficult for me. Saliva is tough & I take Pilocarpine several times a day. When I wake up my mouth is very dry and requires multiple rinses with warm water to wake the mouth up. The tounge just feels bad. My teeth feel loose.

My team says this is just the healing process and be patient.

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.