Hi to all,
Hope it’s ok to post without a confirmed diagnosis.
I’ll start by saying I am 42 and have had a hiatus hernia diagnosis since I was early 20’s. I get a sore throat pretty often and always put this down to GERD as my hernia is pretty bad. PPI’s however have always kept it somewhat under control. I’ve had a pain when swallowing for about 2 years but was checked by ENT 18 months ago who saw nothing concerning.
About 2 months ago I got the worst sore throat I’ve ever had and worse pain when swallowing. I was referred for an urgent gastroscope to check my hernia which they reported seeing nothing suspicious but recommended and urgent ENT referral as all symptoms seemed to be in my throat.
The referral was done on a Friday evening and I had a telephone consultation on the Monday. Hospital called Wednesday and asked me to come in for an ultrasound on neck which reported nothing suspicious. Consultant app booked for the next day and taking one look he said he’s moderately sure this is tonsil cancer. He took 3 biopsies right then as one tonsil was larger than the other which is the side of my pain. He said that even if the biopsies come back ok he is still doing a full tonsillectomy as he doesn’t like the look of it and would be concerned the biopsy missed something. I have an urgent CT scan and MRI already booked over the next week. I am terrified of a GA.
I’ve unfortunately had many 2WW referrals in my life and have been fortunate they have all been fine so when he looked concerned I felt my life turn upside down.
I’m not really sure what I’m looking for. Maybe some coping mechanisms to get through the next few weeks wait. I can’t even relax if by some miracle the biopsy comes back ok because of what the consultant said. However, I am so grateful he is being so thorough. I also know I do not have HPV because of a recent smear so that makes things worse. Trying my hardest to stay off Google but I do have health anxiety so that’s a struggle.
Anyways, if you read all this I appreciate it and I wish you all the best.
Hi SS19835e12fd
Welcome but sorry to see you here. Don’t apologise. We have all been where you are and it’s really helpful have have the support many can offer here.
It sounds like your consultant is on the ball and things are moving fast. All you can do is keep doing normal life and the things you love too. Get out and about and keep busy. Dont look for reassurance on Google. There is none.
I also know I do not have HPV because of a recent smear so that makes things worse.
It doesn’t work that way. Genital HPV has little to do with oropharyngeal. My base of tongue cancer was HPV positive ( 80% of oropharyngeal cancer is) but my smear negative.
As you have likely discovered HPV driven throat cancer has an excellent prognosis. I am chasing 7 years now.
A word of warning. Don’t worry about the GA. The theatre staff and anaesthetist can keep you alive standing on their heads. You will get a thorough pre op to make sure all is good. Tonsillectomy in the adult is pretty painful for two weeks post op so make sure you are armed to the teeth with enough analgesia when you are discharged. Good luck. Stay with us … we’ve got you
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi 
I was 38 when diagnosed and, like you, there was a suspicion it was in my right tonsil as it was bigger than my left. I already knew that I had cancer as it presented in my lymph node on my neck.
They tried to biopsy my tonsil in the clinic but the samples they took came back inconclusive. Thankfully they went ahead with the tonsillectomy and they found it in there.
I’m a year down the line from my surgeries now and doing fine, living as normal as life as I was before.
keep us posted with your progress and yes, stay off of google and the likes.
ask away with any questions
chris
