This is my 1st post so it may suck. I had a sore throat and everyone said it was tonsil stones and it was. But as time passed, it got worse intermittent pain in right ear and swollen nodes. Went to clinic and they say stones and strep.....give me antibiotics. Swelling goes down, pain better but pain slowly comes back.

At this point, it really just doesn't feel the same as before. Schedule with an ENT and he said I won't be pain free until tonsils are removed but surgery is elective. I chose to have surgery.

I had tonsilectomy on 6/27 and on 7/2 the ENT called to tell me there was cancer in them. Now a cancer patient ....have had PET, CT, bloodwork. Have appt with radiologist Monday and am scheduled for lingual tonsil removal and neck dissection in Aug.

I guess my point is I would still be hurting with cancer and not know it if I had not perused it. Even with the stones, no one referred me to an ENT or suggested it because all you could see was stones. The cancer was hiding behind it. So glad my insurance does not require a referral.

I think you have taken the right steps but if it continues I would suggest you keep searching. The CT I just had shows nothing...maybe because tonsils are gone.

I don't want to alarm anyone. I just want everyone to be alert to changes because I feel overwhelmed with what happened to me. My ENT was so upset when he called because to look at it, there was no indication. He was glad he decided to have it biopsied.

Welcome to OCF, Jules! You have found the very best resource to help get you thru whatever path you are facing with oral cancer (OC).

Even the most experienced doctors/specialists can NOT tell what is cancerous and what isnt by a visual examination. The biopsy is necessary to determine exactly what the sore, spot, lump, etc really is.

Take some time to read posts here and on the main OCF site to learn more about your illness. Theres tons of info at your finger tips and many posts on every imaginable subject.

Wishing you all the very best with everything.

Hi this is Hazel I am in the U.K. so my treatment may not be the same as yours. I too has tonsil cancer now 11 month post radiotherapy,I had no pains no sore throat no ear ache nothing. In fact I had just cycled 1100 kilometres in Spain I am 62 only symptom was a lump in the hollow above my right collar bone .long storage but 35 radiotherapy sessions and 2 cisplatin chemotherapy sessions. The treatment is rough but if I can do it anyone can, recovery for some is long but it is doable. Yesterday for my cancer hospital I cycled 60 Kilometres in the pouring rain on a charity bike ride proof that there is light at the end if the tunnel.posituve mental attitude certainly helped me get through this
Any questions just ask and good luck
Hazel

Hi Jules,

I’m wondering if you were perhaps responding to me. Stories like yours do concern me because it sounds like your symptoms were pretty non-specific and didn’t raise much alarm.

The ENT who ordered my CT said to me at my last visit “I don’t see any reason to remove your tonsils.” I sort of tuned her out because she wasn’t addressing my bothersome symptoms but rather suspected I was asking for a tonsillectomy. Having recently had a surgery I wasn’t planning on (gallbladder removal), an elective surgery without due cause definitely isn’t my prerogative.

In addition to your account, I’ve read of others, possibly not here, where cancer was an incidental finding during tonsillectomy. I’ve also read of those who had tonsillectomies due to enlarged (symmetrical and asymmetrical) or because of pain and they were benign. My pain isn’t constant nor is it awful... I’ve had strep and tonsillitis and THAT pain is constant and much worse. This is more like zaps of pain, the occasional painful swallow and some pain occasionally when swallowing food or liquid. It’s also coupled with neck ache. And intermittent ear pain.

I feel like at this point my CT was just a waste. If it truly can’t detect a fair number of these cancers, why do my ENTs seem so confident that we can say “no cancer” based on it?

Yes, I was responding to you. Mostly because it was the discomfort that lead me to get a tonsilectomy. Everyone said tonsil stones and I went with it. What if I had questioned it more at the time???

Keep following up and if you feel it has changed be proactive!

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.