Disclaimer;
Hello! I am totally new on Macmillian Cancer Support. Re-posting here after reading a recommendation from a moderator on general chat.
Greetings!
Background story (skip if you want :) :
I had ”tongue problems” (pain after eating hot food at a specific spot, pain & discomfort overall) since early-ish 2022, with a minor lesion forming eventually 2023.07-08.
Illness was initially diagnosed as ”hypochondria”. Later on; I was remitted and it was ”guessed*” to be Oral Lichen Planus. Since the cortisoid treatment (and it’s repetition) didn’t help; I was admitted to a Specialist Clinique. A biopsy showed very mild Dysplasia with possible lichenoid reactions.
It healed but about 6 months later; it was back at about the same place. Another biopsy and lesion removed. Results indicated low. displasia. Subsequent doctor visits showed lesion healed again.
During that time, I resumed my old ”bad habits” of some light alcohol consumption and very heavy ” every waking hour” use of snuff. a.k.a Swedish Match.
About 6 months later at regular check-up; this time same doctor looks concerned. Informs that she will resect a larger bit of my tongue this time. Resection done.
Result:
Carcinoma in Situ. Doctor(s) said it’s not real cancer and it’s not spread to surrounding tissue but it’s called cancer..
Shortly after that; booked in for a ”more major” surgery at a major hospital in my city.
In the meantime; tongue started healing (lesions decreasing and this can be observed) and doctors noticed it. Doesn’t look too much like cancer but a ”more major” surgery with general anesthesia still needs to be done to make sure all all dangerous cell formations are gone. But because of the status of the lesion (that was healing); Surgery considered more of a ”biopsy” rather than a true surgery. But at this moment it’s more a question pf semantics.
Surgery completed. Specimen sent to lab for analysis. Sugery gone very well and doctor informs me as such.
But the patient (me) informs the doctor that the place they removed was the ”focal point” of my pain and discomfort, and all the other very mild etc. lesions were forming around it over the years, but patient believes the piece removed was the true culprit (meaning patient subjectively believes that there is a chance that cancer cells might be found there, as that precise area always has been the ”head of the snake”.
Doctor thinks (imho logically) that it’s still a very good thing that it was removed, then.
Fast forward about 2 weeks;
Laboratory results arrived. PS! Where I live, patients do not receive the results themselves, rather a doctor explains the status, this is common practice).
But this time; info is written on my journal. I was already* booked in for a visit to my doctor about my lab results (about 3.5 weeks from now) but some basic info is written on my digital journal. And it gives the following information. Warning! I will be using Google Translate. If anybody wants the info in original language; I might be able to provide it as well (umm, I hope I won’t be breaking any copyright laws uhuh).
INFO FROM LAB ANALYSIS;
Residual component of cancer in situ centrally in the specimen, however this was radically removed. Moderate dysplasia in the resection margin forward but no cancer in situ component here. The patient is scheduled for a return visit and PAD report.
I do not know how to deal with this; how or what to think?
The information I find on the internet gives very contradictory answers. Everything indicates some level of danger. But some pieces of info makes me think that I am basically doomed and might as well kill myself now with an over dose of umm some particular substances. While other articles, sources indicate that my situation is better because cancer in situ seems to be completely removed (no cancer in situ in margins, thus it’s not directly* ”cancerous” anymore) and moderate dysplasia in the periphery might turn cancerous so it should be treated with either further surgery, some radiation therapy or both, but only as a precaution, like; just in case, so that it doesn’t turn cancerous in the future.
PPS! There is so much more I could have written about my health, tongue issue, symptoms, ups and downs current and past, visual status of my tongue and lesion (that was excised), sickness effect socio-economic factors such as social activities, work etc. But then again this giant wall of text could turn into a book so I humbly am trying to avoid that that.
So; cancer in situ removed(?) and no cancer in the periphery, but moderate dysplasia in the margins. Man I’m loosing my mind and any feedback, help, assistance would be much appreciated
So; cancer in situ removed(?) and no cancer in the periphery, but moderate dysplasia in the margins. Man I’m loosing my mind and any feedback, help, assistance would be much appreciated
Hi
i would just make sure you were monitored regularly. Does that sound sensible?
oh and give up alcohol and tobacco.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hello Beesuit and thanks for the promt reply!
What you say makes perfect sense (in regards to tobacco & and alcohol).
The time period when my tongue seemed to be getting better (or at least no carcinoma in situ, just very mild dysplasia recurring 2 times) was the time when I had completely stopped using tobacco (after many, many years) and any alcohol products and it was a time when I was very vehemently adhering to specific regimens (eating habits, nightguard etc.) to promote the health of my tongue.
Things were ”good/alright” with my oral (to ngue) health. The doctors were ”satisfied” as in; not seeing any noticable danger. My checkups were reduced to once per 6 months, eventually planned to be less soon after that.
But then in december 2024 I received two very, extremely stressing news (not* health related, other ”life stuff” but important, crucial and very difficult tasks to be handled because of some extremely stupid and shortsighted things my father had done (in regards to inheritance and so much more) and suddenly it fell on my plate while I was trying to recover and have a normal life.
Stress got the better of me. First I started consuming very small amounts of alcohol again. Then a bit more. Then just a bit o’ good old swedish match. Some cigarrs with some pals on rare occasions. Hookah with some other pals. And then, as things got more and more stressful; I started my old habit of using snuff (match) all the time, all my waking hours.
About 6 months on, next doctor’s appointment on 12’th of August 2025, and the doctor as I posted above looked quite ”concerned”.
So, just as you kindly and sensibly recommended; I quit all of my bad habits (tobacco etc.) again; then and there!!
After quitting and the smaller biopsy (that later showed carcinoma in situ), my tongue worryingly ”got worse” at first, but than it started getting better, the lesion started disappearing.
But ofcourse, since the doctors already had found carcinoma in situ on the previous surgery, they had to operate again to clean the area even more (some of it was already removed).
Many things, even alcohol is kinda, sorta easy(ish) to give up but tobacco, oh boy! That was a challenge. Ofcourse; nothing compared to a less cancerous or cancer-free life.. That’s a worthy goal 
Any insight is much appreciated. Thank you kindly folks.
