Hi, I am new. I have been having very suspicious symptoms for 2-3 months. ENT oral exam/endoscopy was negative. CT 5 wks ago showed what appeared to be a "small foreign body, probably calcification" in the left tonsillar area (left side is where the symptoms are). I go for a tonsillectomy and biopsy this Monday. ENT wanted to remove just the left tonsil. I wonder if I should remove both so that if it is OC, perhaps I won't have to get the other side removed later on? I am already having lots of pain chewing and swallowing solid food. I hear tonsillectomy is the worst pain. I am very scared. Would appreciate advice. Thank you.

dkw, wishing you good luck with your surgery. Has oral cancer been discussed with you as being a possible cause for your problem? Are they planning on doing a biopsy of the removed tonsil? Make sure to ask for them to check it for being HPV+ too. Did you get a second opinion?

It may have been a good idea to get this biopsied prior to having surgery. Then you would know exactly what your are dealing with and a treatment plan could be made. As far as removing healthy tissue thats one to discuss with your doc and together you both make that decision.

Make sure you ask for pain meds, then you wont hurt so much.

Best wishes!!!

I'm not sure if they would remove both tonsils at once, if it's not necessary, due to risk of complications, bleeding, especially in adult patients. Actually, there are six tonsils, 3 sets, the palatine, pharyngeal, and lingual tonsils, but one is more commnly reffered to, and prone to problems, and that is the palatine tonsils, although with cancer can be with any, but more commonly with the palatine, lingual, and usually on the left side with HPV. and less common is bilateral involvement, but it can occur. If they are going to remove one, and then biopsy, I don't think they would want to take a biopsy before, as to not to disturb the tissue, in case it is cancerous, but it seems not, hopefully. During surgery, they may do an endoscopy or pandenscopy, and take a biopsy of any other suspicions. Good luck.

Hi dkw,

I had two sets of tonsils taken for biopsies (palatine and lingual). Initially my 1st ENT took both palatine tonsils explaining that I didn't need them anyway (it makes sense to take both based on that logic). After a 2nd opinion I ended up at Johns Hopkins and had the cancerous lymph nodes removed (selective neck dissection) along with the lingual tonsils.

I won't sugar coat this but a tonsillectomy as an adult is NOT fun. It's about two weeks of hell. Check this site for info on recovery. It was spot on! http://tonsillectomyrecovery.com/ (The recovery days link gives you 1st hand experiences day by day). My advice is to make sure you take pain meds and stay ahead of the pain even if you have to wake up to do so.

Good luck with everything! Positive thoughts and prayers that everything comes back clean!

"T"

Hi "T",
Thank you for your prompt reply. I appreciate all the helpful info on this forum during this very confusing, "lonely-feeling" time in my life. Logically, I was leaning towards having both lingual tonsils out despite ENT rec. I appreciate your sharing your experience. I am still recovering from a tongue biopsy of some leukoplakia left tongue, as well having trouble chewing and swallowing food not chopped up without pain under my left chin/neck. I am very fearful of the additional pain and trouble swallowing post bilateral lingual tonsillectomy, but I suspect this will be "nothing" compared to what lies ahead. I am so thankful to this website and forum. Right now, my emotions are everywhere, though I am prone to depression and anxiety so that seems to be the predominate feeling. "T", thank you so much for your positive thoughts and prayers. Brian Hill, thank you for founding this website. I am in such admiration of you all for your strength and courage.

Hi again. My DDS suspected HPV OC (non-smoker, non-drinker) when I saw her end of Jan from posterior left tongue pain that she said was "too far back" to be caused from my teeth. I happen to work with ENT who did fellowship in head and neck oncology, but not sure if he was initially in denial of my problem, or simply based on neg oral exam, neg endoscopy, and CT stating that LT lingual tonsillar area showed asymmetry, but did not appear to be "adenopathy" that ENT told me he didn't think I have OC. Symptoms persist and worsen, so I persist to seek the diagnosis that I feel is 99.99% certain to be OC. Yes, ENT will biopsy the tonsil. He said that he will be doing a direct laryngoscopy and checking for any lesions. If he finds, he will biopsy. If he does not find, then he said he will take a random biopsy of the base of my tongue. I have not been able to sleep. This is all so very scary. I guess any cancer is bad, but OC seems to be one of the worst as far as sequelae and recurrence. I know that you are all survivors, and that brings me some hope, even if a lot of times, I feel that I have been dealt "a death sentence". I can't tell you all enough how much I admire you all. I don't know how to find that sort of strength and courage in myself. Thank you all for your support.

dkw, please dont get ahead of yourself. Not even a doctor can diagnose OC without a biopsy. Many patients will have all kinds of symptoms without having OC. Especially with being very nervous and worrying excessively their minds can and will play tricks on them. It will make their symptoms appear to be more than they actually are. Think of it like when you buy a new car, dont you begin to see the same car all the time when before you never noticed them. Please dont let the scare of having OC steal your time away from you. Keeping busy and focusing on tasks which take alot of concentration will help you to relax. Try to limit the time you think of your situation, for example give yourself 5 minutes then "change the channel" and think of more positive things.

Im not minimizing your symptoms or situation, Im trying to help you not be so upset before you even are sure what is wrong. Ive been in the same situation many times with OC and a few scares and its NO picnic. I know how terrifying it can be when you dont know all the details or facts. It makes you feel powerless and alone in your worry. But, the bright thing is you are NOT alone! You have found the OCF forum and will get tons of info and support to help you along IF (thats a big if too as you arent sure yet) you have OC. Im hoping it turns out to be nothing more than infected tonsils and you wont need to be here.

Best of luck with EVERYTHING!

Hi Christine, thank you very much for your comfort and wise advice. I do have that tendency to get way ahead of myself and worry myself. I've even checked prices for cremation in my area. I know that worrying is not good for my body, especially at this time. Such a difficult habit to break. But yes, you are right. I need to set a time limit, and then just busy myself with other things away from all of this. This is a wonderful forum, and even if I still lack a definitive diagnosis, I have found some comfort among you all already. Thank you for your wishes. I will keep you all posted.

[quote=dkw] I've even checked prices for cremation in my area. [/quote]

Hi dkw,

The only cremation you need to worry about is the type that goes into coffee or tea at this point Personally, I prefer half and half.

The saying "It's not cancer until they say it is" rings true. I made the mistake everyone makes of reading WAY too much. Even though I was 99% sure I had cancer, it was still a shock to actually hear the words. Please know it is NOT a death sentence! If you do have OC and it's HPV related, know that it will respond well to treatment.

If your test results come back positive, make sure you seek a 2nd opinion at a Comprehensive Cancer Center nearest to you.

First things first... get the results. And it's "one day at a time" until then.

"T"

Hi All. Thank you "T" for your response above that I just saw. It's now been two weeks since my bilateral tonsillectomy and bilateral BOT biopsies. The ENT did "punch type" biopsies. Had bleeding twice from the right tonsil area; once back to surgery to remove the clot and cauterize it. The good news for now is that the biopsies of my tonsils and BOT were negative for cancer. I did have pus and inflammation left tonsil, where the rear of tongue pain started. Right now, the right side biopsy site I think is taking more than 2 weeks to heal, though I also must have a lesion or something mid-way right side of tongue after coming out of the 2nd surgery three days ago, as that hurts the most now. Maybe they pushed my tongue down against my teeth while cauterizing the right tonsil area? Also, developed a cold sore right side of lip right after the surgery. I am crossing my fingers. Now that I am aware about HPV oral cancer, any pain lasting more than 2 weeks can make me a bit anxious. I do need to try harder to learn from you all. I need to learn not to jump too way ahead and worry unnecessarily. As Christine and "T" says, first things first, and worrying is not a good thing. I will copy and print many of your wise words and keep them with me as a constant reminder. Again, thank you all for your support, your courage, your positive attitudes, and for your ever so kind generosity.