Same story as a lot of others it seems like that I'm reading. The right side of my tonsils are still swollen and slightly discolored. First trip to ent they did do endoscopy and wanted me to try some different GERD meds to see if there was any improvement. I haven't seen any improvement whatsoever. Been thru two round of antibiotics with no change either. I lost approx 20lbs in one month and I had some scratches on my leg that were not healing at it's normal rate. Also I have a feeling of something stuck in my throat and can never get it out. It seems to always be worse @ pm. When I try to eat bread or meat or something along those lines it gets stuck in my throat. I either have to follow it with tons of milk or sometimes it will gag me and I have to run to the bathroom and vomit it up so I can breath. I've read so many stories where a biopsy was done and the cancer was missed. Also the same with a CT scan. I'm so tired of feeling crappy and tired and not being able just to eat simple pizza. I think everyone loves pizza right? lol I also have the hoarse voice or deeper voice. Sometimes it is worse than others. I carry something with me to drink at all times because of my dry mouth and tonsils. The right tonsil is definitely getting more inflammed and aggravating. I also have periodic ear pain usually on right side. Here lately I've noticed when I cough and try to get mucous up I have this feeling of drowning. Like it's not coming out but clogging up nasopharynx area or something. This has been going for several months now. I feel like when I went for my first visit to the ENT they were just worried about getting me in and out instead of listening and looking closer. Can I demand that they take my tonsils out? That is where I'm seeing and reading many people find the cancer. I don't want them to do a biopsy and miss something. So many stories of biopsy missing it. Also should I try to get into a Surgeon and skip the follow up with ENT? My appt for ENT is this Friday but it has took me forever to get a f/u appt.

Thank you for listening and I'm so thankful to have found this forum. So many others with same issues and very understanding and helpful. <3

Hearts4all,

I'm sorry you're going through this. I know in the beginning it's push and shove to get through to the medical people. For some reason they think they know your body better than you do. I'm going through that with my new GP right now and if he keeps it up I'm going to ditch him.

I had tongue cancer it's different than throat or tonsil because there was a lump we all saw.

My suggestion is to go to a ENT Surgeon or an Oral Surgeon for a biopsy. I would demand a PET/CT Scan, MRI or whatever needed to have peace of mind.

Concerning feeling something stuck in your throat I had the same feeling I was told it's Acid Reflux. I'm taking Nexium daily and the feeling is gone. Over the counter meds didn't work, of course, the expensive Nexium did.

Others on the forum will reply who have more information on what to do.

I hope you get answers soon. Take care,
Connie

Welcome to OCF. I will give you some basic info that should help you. If you are unsatisfied with the ENT you have seen then go to another one. Look for one who specializes in oral cancer.

It sounds to me like you feel a biopsy wont catch your cancer. A biopsy is a definitive yes or no that the removed tissue is cancerous or benign. When seeing a doctor it is very important to have a good conversation with them to explain everything you have going on. Demanding medical tests or surgeries doesnt establish a good relationship with your doctor. Of course you would want to advocate for yourself but demanding something usually isnt the way to do it. Skipping being diagnosed and heading right to a surgeon is not going to get you the right medical help. You cant treat something until it is found. Take it one step at a time and begin by being seen by a qualified ENT.

Reading the stories of others will not clarify what is going on with you. It will only further confuse things and make you afraid thinking 'what if'. Sure there are some people who are misdiagnosed but that does not happen to everyone. Im not one who like statistics but I think it will help you. There are approximately 37,000 oral cancer patients diagnosed per year. This means in the US about 100 people per day. That makes it only about 2 people per state per day get this diagnosis. I hope you will not turn out to be one of those people. Remember that everyone is different and will respond to things in their own way.

Best wishes.

Hi there Christine is right - first off if you feel you're not being listened to - go see someone else. And don't wait. Try to get in as early as possible, when you see the dr for follow up, do tell him your very concerned and why - perhaps he will send you for a ct, MRI, pet, - a biopsy is generally definitive, the only Time they miss something is if they remove tissue from the wrong area in your case since things don't appear to be visible so finding somewhere to biopsy is a little harder. You said they scoped you, usually if here's a tumor impeding swallowing they would see it. . Scans are actually accurate in pointing out issues - though they also respond to inflammation, and infection, but they will point out problem areas and maybe that would be a good starting point as what is going on with you does sound unusual. Do advocate fo yourself with your dr. But remember as Christine said - demands may not be met with a goo attitude. Just share your concerns if noting comes of that do get a second opinion. Good luck! And I hope it's someting minor.

My ENT took one look at my enlarged tonsil and recommended that it be removed. The biopsy proved a cancer tumor and radition followed. My understanding is that a biopsy before a tonsilectomy has a risk of missing the tumor and giving a false reading. Your ENT should be questioned on why the tonsilectomy is or is not recommended in light of your other symptoms and medications. I would keep the appointment but schedule an appointment with an another ENT for a second opinion. The problem with the tonsil may very well be non-cancerous but a tonsilectomy could be the best option to correct the problem. My experience reinforced the advice from many others: do not assume anything, ask, ask and ask again, research on your own, learn as much as you can. This forum is a great resource.

Maybe "demand" is a strong word, I'm still on the fence. You felt they weren't listening to you and rushing you in and out. Reading what you wrote this morning irritated me, not listening to you.

I won't hijack your topic, this is where I was coming from using the word demand. My GP left in August I had him for 10 years, wonderful young man. He transferrred me to another Dr. in the same group. In Sept or Oct I always get bronchitis and I get certain meds to take care of it if not I will end up in the hospital with pneumonia. Like clock-work I got bronchitis, went to the new Dr. he didn't listen to me when I told him what meds work, didn't look at my back records, gave me what he pleased, rushed in and out. I guess they are on a time clock to see how many patients they can see in an hour. Went back the second time gave me what he pleased again after asking for the 2 meds that work, went back the third time this time I crawled in to his office with asthmatic bronchitis and walking pneumonia. This is not listening to a patient.

I was as nice as could be when I first noticed the sore on my tongue, then I got the run-around. Five months later I was still getting the run around. I've learned my lesson from all of this if a Dr. isn't going to listen to me I'll move on. If the Dr. had done what he was suppose to do when I first noticed the sore on my tongue I wouldn't have had the ND and only minor surgery.

You are your own best advocate you do what you think is right, you know your body best.

Best Wishes,
Connie

I had a right tonsil cancer and there was no pain involved. It was basically asymptomatic with the exception of some slight hoarseness and sensation of something stuck in my throat.

Although the general rule is that if something doesn't respond to treatment (like antibiotics) in 2 weeks then its time to see an ENT or head and neck surgeon, there are exceptions to this. Peritonsilar access (PTA), for example, can take months of antibiotics to effect a cure. The tonsils tend to swell up when infected, making for a sore throat and difficulty swallowing.

In my case, the tumor had gotten so large (6cm) that it was practically choking me. I was, however, able to eat and drink normally. The tumor itself was an unmistakable, tan, rubbery blob that actually was pushing my uvula to the side. No tonsillectomy was required as the radiation simply melted them away.

I dont understand the correlation between the slow healing of the scratches on your legs and OC. Diabetes is what typically causes poor extremity healing.

In any case, GERD is not something to be taken lightly but, more typically, the risk factor with it is esophageal cancer.

There was no ambiguity when I was diagnosed initially with OC. The ENT made the pronouncement in mere seconds during the oral exam -no scope - just mirrors - not even a biopsy although one was ordered and confirmed his visualization.

Some ENT's have made a good practice inserting tubes in kids ears - make sure that yours has OC experience.

I would not recommend getting a tonsillectomy until cancer is ruled out, by biopsy, (if they can find a region of interest (ROI) to biopsy.