Active Threads | Active Posts | Unanswered Today | Since Yesterday | This Week
Symptoms and Diagnosis
Yesterday at 03:07 PM
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’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...
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Oral Cancer Recurrence
Yesterday at 02:01 PM
I am so very sorry to read about your recurrence!!! The timing makes it even worse, so soon after hitting the coveted 5 year mark. The entire situation stinks! Im sure its not easy to mentally handle the unexpected newest diagnosis.

Best wishes with everything you are going thru!!!!
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Coping / Anger and Fear
Yesterday at 01:40 PM
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 smile

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!!!
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Oral Cancer Recurrence
Yesterday at 01:20 PM
Hello and thank you for replying. Yes, I am at a Cancer Center of Excellence. My surgeon is one of the top surgeons in the field of Head and Neck Cancers. The reason to wait is a flap covers up more cancer. Considering my case of recurrence and the difficulty getting clean margins my surgeon and the team have decided because I am the one that first identifies the lesions - some are dysplasia - it would inhibit my ability to find the lesions early. Of course, we all know that finding them early is our best chance. I am really more interested in having the flap for eating purposes.
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Caregiver / Co-Survivor Forum
08-20-2019 10:24 PM
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's not new for me but the death wish, risky behaviors, yeah, that's new.
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Introduce yourself
08-20-2019 12:23 PM
Just a tip I got from the visiting nurse — if the tube does get clogged, put in a syringe of soda/pop. The bubbles will push whatever is clogging the tube into the tummy. Of course, if it’s really clogged, you should go to the ER.
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Introduce yourself
08-20-2019 02:08 AM
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
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Introduce yourself
08-18-2019 08:14 PM
If I gave John ice cream, it was always part of a smoothie made with Ensure. It was to improve the taste and bring up the calories. You’re right about not consuming empty calories, but there was little else he could eat at that point. Some people on the forum, I have read, use protein powder in their smoothies. ChristineB has a recipe that is packed with calories, I think she used peanut butter. She also has a List of Easy to Swallow Foods. You can try searching for it on the forum. Really, whatever works and feels right for you, as long as you eat and not lose weight.
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Introduce yourself
08-18-2019 05:08 PM
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. cry
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Symptoms and Diagnosis
08-17-2019 06:46 PM
thank you for your reply, very clear and complete. because of my ignorance I got into a bigger problem than myself, of which I knew nothing completely.
to date I have exaggerated otorhinolaryngology visits from a hospital primary, the last 4 months ago. I lament a swollen tonsil (with a crypt I had even before the report at risk) but now it's got worse, I have had these problems for 7 months and a swollen neck lymph node detected with MRI, "reactive" for 7 months. then I noticed that I have a whiter tongue than usual and even if I clean it with a toothbrush, it is often "dirty". the otolaryngologist who visited me told me you are calm that the lymph node is deflated but after 4 months it is still there.
I went to an oncologist gynecologist, I did peniscopy with acid, nothing significant. only initial warts say, to be cured with creams and supplements. from him I also did two oral and penile tampons, called HPV TEST in practice they are sticks rubbed on the affected area and then made to analyze in molecular biology. negative results. this gives me some relief in spite of the symptoms that persist, but I don't actually know what reliability they have, are you not aware of them? next week I will go to an otorino, maybe a specialist for cancer, not if I can get a biopsy, I hope so. but I would also like to understand how invasive it is as an exam ... thanks to everyone and good luck!
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Introduce yourself
08-17-2019 05:13 PM
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.
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Introduce yourself
08-17-2019 12:02 PM
Sorry, I somehow missed your post!
Thanks so much, Paul! It makes so much sense that these changes can light up a PET! Still, during the surveillance, it’s hard to believe. This is all such a roller coaster, but the comfort and experience and compassion you, Christine, and everyone here supporting and sharing their stories means the world!

Christine, I got the OK to add protein powder...thanks for the tip!

Talk soon, and thank you all again!

All the very best!
6 673 Read More
Oral Cancer Recurrence
08-15-2019 03:35 PM
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!
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Caregiver / Co-Survivor Forum
08-12-2019 07:00 PM
thanks everyone.

I suppose i worry a little too much about recurrence as he seems a bit arrogant about it all now. Time will tell.

I've so appreciated all the info, experience and encouragement. I will continue to check in and read other's stories as many of you feel like old friends.
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Eating, Speech, Swallowing, and Alternative Feeding
08-12-2019 05:58 PM
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.
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Introduce yourself
08-10-2019 10:07 PM
hugs to you. the mind is a powerful thing. I've heard it said on here before and I will repeat it: it's not cancer until it's diagnosed as cancer.

I don't know anything about medical care without insurance so I can't help you with that but it would be best for you to find out if there is anything to worry about.

Keep us posted.
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Currently in Treatment
08-07-2019 02:29 PM

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!
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Long-Term physical and QOL Issues related to treatment
08-06-2019 11:54 PM
Thanks, folks. I appreciate the suggestions. I recall that my earlier dilations did indeed help for a year or even more before I'd have to go back for another one. This time was different. I'll continue to research options, and wish everyone good health.
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Medications, Treatment, Procedures
08-05-2019 12:42 PM
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.
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Introduce yourself
08-04-2019 04:36 AM
Hello Tom,

This is Crystal, in North Carolina.

I hope you get some relief, somehow, for the dental problem ? What was provided in the emergency department for you?
Unfortunately, I am familiar with that route too... But not for dental pain ( all my teeth were extracted with my reconstruction surgery)... But I had 2 admissions during my Rads, for pneumonia and then toxicity ....

As you are finding out now, it takes mental determination and a sense of Purpose , to keep going in Every day to get your treatments. Try to stay strong... Fortify yourself with good diet ( do the best you are able to. Do you have a feeding tube??) And also, I Hope you have supportive people around you.

Virginia Beach is nice!! I visited there years ago.

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Introduce yourself
08-04-2019 02:45 AM
Thank'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.
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Currently in Treatment
08-02-2019 07:38 PM
They are really on the ball. I feel confident with them.
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Symptoms and Diagnosis
08-02-2019 05:34 PM

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!
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Long-Term physical and QOL Issues related to treatment
08-01-2019 03:54 AM
After the first time I had OC in 2007, I had permanent sinus damage from rads. I think it was the scatter radiation that fried my sinuses. To this day I must take sinus medication to help control my stuffy/runny nose issues. Most do not have this issue but it is something that can happen to some OC patients. Maybe your husband has the same issue as I do?
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Introduce yourself
07-31-2019 06:41 PM
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.
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