| | Joined: Dec 2025 Posts: 4 Member | | Member Joined: Dec 2025 Posts: 4 | 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. | | | | | Joined: Nov 2019 Posts: 85 Likes: 9 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Nov 2019 Posts: 85 Likes: 9 | 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
11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue 1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
| | | | | Joined: Dec 2025 Posts: 4 Member | | Member Joined: Dec 2025 Posts: 4 | 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. | | | | | Joined: Jul 2025 Posts: 1 Member | | Member Joined: Jul 2025 Posts: 1 | 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.
Paddi
| | | | | Joined: Aug 2020 Posts: 190 Likes: 62 Assistant Administrator Senior Member (100+ posts) | | Assistant Administrator Senior Member (100+ posts) Joined: Aug 2020 Posts: 190 Likes: 62 | 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
OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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