Hi everyone, I’m a 37 year old single mom who has never smoked and does not drink. Back in May, I noticed a small white spot on right side of my tongue. It’s on the back of my tongue and on the underside, where it meets the floor of my mouth. It is not raised, open, ulcerated or painful. I have no other symptoms. I have seen an ENT twice for this and go back in October. The ENT did a thorough exam and said that it does not look or feel like cancer...also, this spot is flat and about 1mm in size. I have not want to proceed with a biopsy because it seems to be unnecessary and the ENT has not pushed for this but does still mention it. Despite this, it has me very worried. I’m debating if I should just get the biopsy when I go back or not? I’m deathly terrified of the treatment and of the pain of a unnecessary biopsy. I want to know what symptoms others had and if this sounds concerning at all. I should mention this spot is next to one of my back molars so it could be due to friction. At the moment, I am taking high doses of vitamin A hoping that helps but so far no change. I don’t think it looks like to leukoplakia to me..it’s flat, white, painless, and I never would have noticed it if I weren’t looking. Thank you everyone. I should also add that I have severe health anxiety...

You have made excellent progress in just one week!!! Sounds like you are healing up nicely and doing very well with the ice chips. It sounds like such a simple thing to swallow ice chips but it really is significant progress

Im sure your hospital stay seems like its already been a very long one. Hang in there, with such great progress you will be back home in no time.

Keep up the good work!!!

did anyone deal with death wish behavior? did you want to die even after you were well? i seriously do not get this thinking. driving without seat belt because it doesn't matter, wondering why he lived, lots of blaming me for feeling empty, talk of divorce. He already has a long history of depression but will only take anti depressants and refuses counseling because he has no deep issues to deal with. I appreciate any thoughts on this...it's not new for me but the death wish, risky behaviors, yeah, that's new.

Thanks Christinne, I appreciate the detailed information. Sorry about the link, I won't post any more whether I think they're safe or not.
Best regards --martin

Since the beginning of March I have had all the symptoms of oral cancer. I have been to several Doctors and everyone of them tells me it's not cancer or they want to do other tests besides checking for cancer. I have had throat cultures, I have had blood work, I have had oral screenings but yet I still have every symptom of mouth cancer and the Doctors now want to test my zinc levels. I feel like all of this is costing me so much money and we are getting nowhere. I have even expressed to my doctor's that I have all the symptoms of oral cancer but as usual I'm laughed at and told that I'm too young to have oral cancer. I feel like I will never get an answer and by the time I do it will be too late. I have 3 kiddos that I hope to see grow up and have their own. I have so much to live for and I feel like Doctors do not take me seriously! How did you all get a diagnosis and how long did it take?? My mouth hurts..tongue is so painful....throat has hurt since the beginning of March and my ears hurt. I have also had an ultrasound and it came back with swollen lymph nodes but when I go to the doctor they say it wasn't nothing to concerned about. I know my body and I know something is not right. I just wish I would be heard.

Welcome to OCF! Im glad you have discovered our group to help you with info and support. OCF is the largest online message board dedicated to providing correct, up to date medical info and moral support for those patients/survivors with oral cancer and their caregivers.

I was on the Keytruda Immunotherapy trial a little over a year ago. The only side effect I can recall was a rash. (not bad) Unfortunately I could not finish the trial as I developed a new cancerous lesion. After they discovered the lesion, they opened up my profile and found that I was actually on the drug and not the placebo. I am not HPV + but for those who were diagnosed as HPV +, the research is showing those patients are showing better outcomes than those of us who are not. I would not hesitate to try the immunotherapy again if they offered a new drug.
Good luck!

i used a list very much like the list in the previous post but as time has progressed, my ability to taste has gone down considerably. I have hpv oral cancer but at present, (week 6 of a 7 week chemo and radiation, I cannot ingest peanut butter ofr chocolate sauce or ice cream. I favor jello, all flavors. one full sugar box is 8 servings of 80 calories, 640 cals total along with 16 grams of protein and then 4 ensure enliven bottles. That's 2000 calories a day and something I can live with. I also take stool softeners and an enema every time 3 days pass without any action there. I know this asked for post treatment but figured no one would mind my adding a note.

Crystal,

I’m glad you’re having the dilation sooner rather than later, and hope it helps your situation. I’ve heard of perforations this can cause. In my case, I never had any in the 8 or I had. I’m due for another one myself, but have been busy with health related matters. Mine weren’t bad, and after recovery I was soon eating, and drinking coffee. At the same time the gastric doctor does the throat he does a biopsy of the digestive system for the Barrett’s esphogus I have. probably caused by the acid reflux.

As far as Field of Cancerization, I’m not sure! I think my cancer is more HPV related, although I was never tested with cracks in my health and system. It’s usually smoking or other relations, and has been a while that I mentioned it. For some reason or many reasons, my cancer was allowed to spread, even after having chemo, radiation and surgery multiple times, but this it past January i’m considerate Cancer Free after 10 years
It took to be clear for 5 years!

I’ve always been watchful and waiting! I discovered 6 of my 7 cancers. The other was found during a CT Scan my new dr ordered for surgery, and found it when he asked if I had new swelling since my surgery schedule, and I was right. It was the new spot! I had looked into cancerization articles and found a chemo they were using, and others things. The chemo later failed, so that put a end to that for me, but I’m always keeping an eye outfit mew treatments and long term survivorship!

Good luck with everything!

Do you have access to a dietitian at your hospital? They can give you suggestions and even recipes. Don’t wait till the last minute. If there is one available, contact him/her now and pick their brains.

Thank you....it's overwhelming to say the least. Worrying is a useless thing but it's hard not to do.

I am scheduled for TORS and neck dissection Aug 16th. I think they are having a little trouble with PET scan as the surgeon has had a few radiologists read it and a specialist who just reads head and neck. There is "mild hypermetabolic" activity but I was less than a month recovery from the tonsillectomy that started the whole thing. I think inflammation that was there before the surgery and what was a result from surgery is muddying the water.

I have a small chance of not having radiation or so they say but I have talked to radiologist any way so I am established and ready if we have to do it. The only good thing I can say is everyone has been nice and super helpful and I really like the surgeon and radiology/oncologist.

Cooper,

I’m glad you were able to see a reputable doctor at a CCC, and from her findings, there is no cancer, which is a great thing! Like I mentioned, the only real way to really decide if it’s cancer or not is a biopsy, but I’m sure if there were any indications of cancer they would have done more as surgeons like to operate. I don’t know what level of suspicion is needed before one is done? I’ve always had a FNAB first, fine needle aspirational biopsy under ultra sound guidance, and most, if not all proved positive for cancer. I think for other potential surgeries they needed to confirm the positive FNAB by a direct biopsy under anesthesia. Then the surgeon proceeded to surgery or not depending on the results in the operating room.

I hope all your tests prove negative! There could be something there, idk, but you’re on the case! In the interim, you found out some details about minor medical issues that can be treated.

As mentioned, I wish they could just do a PET scan, which is pretty sensitive for cancer, but it’s still not 100 percent! Their expensive, about $8,000 here, but since you had a Ct scan and physical check the doctors did not find anything. If they did, maybe a Pet Scan would be ordered, but sometimes they don’t and just use the CT scan, which wasn’t my experience as I always had a PET scan initially or after a CT or MRI.

I hope this helps!

The trach does suck and I'm sure it does add to your discomfort and anxiety. Doe yourself a favor and tell the nurses. Between them and the Dr's, I'm sure they could send a few Xanax your way.

I've been there. It was and is the worst days of my life. Bear down and focus on becoming cancer free. But don't be afraid to ask for the medications that will help you get there.

Good Luck.