Hi peeps,

I have landed at this forum because I am very worried that I may have cancer at the base of my tongue. Specifically the kind caused by HPV16. This is based on the symptoms I have been experiencing the past three months.

A bit about myself; I'm a 28 yr old white male living in Aus, never smoked, drank socially from 18 to 22 and barely touch alcohol now.


For the past 3 months I have had a sore throat and coughing up a small amount of really thick clear 'glue-like' mucus. The throat pain is on the right side near the joint of my jaw and ear. I have also experienced some trouble swallowing.

My GP initially treated me with anitbiotics and steriod nasal spray for 2 months. Neither of these helped so he then ordered a CT of my sinus which showed minor mucosal disease confined to the maxillary sinus. I have been to two ENTs both of which put a scope down my nose and could not see anything sinister. However, these ENT did not specialise in cancer.

I just had my second visit with the first ENT who has requested an ultrasound of my throat and a CT of my throat. I'm concerned about getting the CT as I have already had one of my sinus and think the exposure to radiation might put me at risk. Should I get the CT done or request an MRI instead? I'm not sure what imaging is better. From what I read on the web MRI is.

I have organised to see another ENT that seems to have more knowledge when it comes to cancer. Just want to know what I should do and what steps I need to take to rule out anything bad, which is what I am hoping for.

Thanks
J.

Hi J - Glad you found this place so until someone else gets to you with more direct experience than I've had, do check the main pages of this forum - especially the Diagnosis page. I was the caregiver to my son, who was 33 at the time, he never smoked - and was diagnosed (after a biopsy) with squamous cell cancer under his tongue. It may not be anything serious at all in your case, but your health is very important so it is better if you can see en ENT with a lot of experience with Oral Cancer. Only a biopsy can tell for sure if it is or not. It's also a good idea to be treated at a Comprehensive Cancer Center where they use a team approach for the best chance of successful treatment. Let us know what happens, ok?

J - welcome to the family.

Your symptoms are exactly how mine started and yes I was diagonosed with tonsilar cancer caused by HPV-16. In fact the terms you use to describe the gunk in your throat are the same terms I used.

At this point, don't be worried about the additional exposure to radiation from the second CT to that area. I am 10 weeks post treatment today and have already had at least 5 CT's of that area. I know you are bothered about the exposure but that additional exposure will be nothing compared to the damage cancer will do if mis-diagnosed.

So, make sure you get with an ENT who knows and understands cancer. At a CCC (Comprehensive Cancer Center) would be best place because they know exactly what they are looking for and have seen it and treated it many times before. On the OCF website pages you will find a list of CCC's.

Don't mess around with this. Time is of the essence. If you have cancer and if it was caused by HPV-16 you actually stand a better chance of good outcomes than if it wasn't HPV.

Keep us informed of your progress. And once again, welcome to the family.

Tony

Thanks Anne-Marie ad Tony. It good to hear from people who have experience with this. I feel very alone most of the time and believe I am becoming depressed.

I've decided that I will get the CT scan done. I went to my dentist today who was very helpful. Her husband is a radiologist and she is going to get him to call me to speed up the CT scan process. I'm also booked in to see a more experienced ENT on 19 March.

I feel quite upset. I actually have my wedding in 3 weeks and then honeymoon 2 weeks after. I'm really scared about this being something bad. My fiance says its probably not but I can't help but worry. While I haven't been diagnosed I never thought I would ever face even the thought of something like this before I hot at least 50.

Tony, what other symptoms did you have and how were you diagnosed? My current ENT says my tonsils look small with no signs of cancer? Would the ENT see the cancer with his scope or could be deep in the tonsils and not visible? Also, will the CT pick it up? Sorry for so many questions at once. I'm just so scared right now.

Many thanks
J.

Also, I live in Australia. I don't know where to go for a comprehensive cancer centre. I have nasal congestion too. Was that a symptoms you had?

Hi J, where in Australia are you?

Victoria, Melbourne

Hi Joshua,
There are quite a few Aussies here from Victoria.
Great that you are being proactive and getting tests and appointments lined up. I understand how stressful it can be especially with your upcoming wedding but try not to freak out too much until the results are in. I know that can be easier said than done!!
If you need a CCC I googled "comprehensive cancer centres Melbourne Vic" and there is quite a bit of information.
Best wishes from Sydney
Gabriele

Thanks so much for your posts. Today was eventful. I decided to go to the hospital after stuggling to swallow my breakfast and having pain. They took bloods and an ENT looked down my throat through my nose again. This ENT also said everything fine but was concerned no diagnosis has been made after 3 months. They have arranged for an MRI on wednesday and a follow up consult on Friday. I was prescibed a bunch of pain killers and given a steroid injection for the inflammation. The ENT at the hospital said it is likely they will have to put me under and have a closer look at my throat. on a positive nost the pain in the aide near my ear has subsided and Swallowing has improved slightly though my throat is still sore and the glu mucus is still there. I think perhaps the meds they gave.me are working. I'm a bit confused as to why they can't see everything with the other scope which I have had 3 times now. Hoping some on here can answer a few questions for me.

1. why can't they see everything with the nose scope and have to do one while I'm asleep.

2. What are the statistics on this being cancer especially since I am still relatively young, being inly 28?

3. How is oral HPV cancer diagnosed? Everthing I read says a biopsy is needed but my ENT says from the scope so far there is nothing to biopsy.

4. Will the MRI detect cancer if it is there? I understand it won't diagnose frim my limited reading and a biopsy is needed for that?

Thanks in advance.
J.

Hi,

Being in the something is wrong but don't know what it is stage is unsettling to say the least. The old saying around here is until they say it is cancer then it is not.

A biopsy is the only way to know for sure if you have cancer. If the doctor sees anything on the next exam then ask if they will biopsy what they see. If they find nothing on a visual exam, then a PET/CT can identify any hyperbolic tumor which may indicate a cancer.

For now, try your best to remain calm but concerned and diligent to follow up until the problem is diagnosed. Remember, it is NOT cancer until the test proves it is.

Good luck,
Don