Hi all

I've been following this message board now for a couple of weeks, and found it of great comfort.

I have been suffering with a sore throat now for over two months, and have extensive ulceration over my right tonsil and soft palate behind my uvula. I've been to my doctors a couple of times, who refered me on to ENT after my second visit. I was surprised and slightly shocked when ENT passed my referral immediately on to a Head and Neck Surgeon, who I saw a couple of weeks ago. He looked in my throat and said I should have an urgent MRI and biospy. Unfortunately, urgent means in a couple of weeks and I'm waiting to having the tests later this week.

I've been through a range of emotions over the last couple of weeks - from being uable to sleep, unable to work and certain I must have a cancer, to getting to a stage where life must simply go on.

I am young (31), I 'think' I can see places in my throat where the ulceration is healing, and thirdly the ulceration has now spread to a completely separate place on the left tonsils. Whilst none of things can rule out this being something simister, I am using these to rationalise my fear. I have suffered with long unexplained sore throats before (possibly GERD) and this could just be a particularly bad bout of it.

I wanted to write a little bit about the psychological damage that trying to self diagnose a sore throat can do. When I was most worried, I tried to research my sore throat on the internet but I found this to compound fear and anxiety (as others seem to on this forum). I write of my experiences below, and would plead others not to extensively research their sore throat -- if you are worried go see the doc!!!

1. I started looking at pictures of sore throats. This is a bad idea. There is a wide range of poor and mislabelled images on the internet. I guarantee, you WILL find a picture of a sore throat that looks like your own labelled as oral cancer.

2. You'll read about the symptoms of throat cancer, which are wideranging and largely non-specific. You will have some of the symptoms (if not most on the list). Most of the symptoms are obviously linked though --if you have a sore throat its likely it will be painful swallowing! This will do nothing to help you. Oral cancer seems to be able to present in a plethora of ways,

3. You will come across a large number of articles about HPV, and oral cancer being an STD. Whilst there seems some published scientific articles between oral HPV, oral sex, oral cancers etc none of this is at all helpful to your situation. This makes you think that your sore throat (which from looking at the pictures is certainly cancer(see 1)) is entirely your fault. You feel guilt and shame, even if there is no rational reason to do so. Of a similar vain to above, you'll read that sore throats are more coomon in immunocompromised people such as those with HIV. Just don't even go down this line.

4. You will read blog forums of people freaking out about their sore throats. Symptoms and scenarios will sound similar. The fact that these posts are normally never followed up byt the original poster tells you its very likely their throat got better.

I don't want to sound patronising, but urge anyone not to extensively search the web. If you're looking for reassurance, then you will not find it on the internet. I've learnt this at my own expense, and was not able to sleep for the best part of a week because of it.

So, back to my situation. I'm still playing a waiting game. I have 5 more days until the biopsy, and then 'about 2 weeks' to wait for any results (surely urgent should mean a bit quicker than this?). I guess there is a chance this is going to turn out to be something sinister, but for the moment life must go on and I remain positive.

Thanks to anyone who took the time to read my post. I hope you are in good health and positive frame of mind too.

J

Sometimes Dr Google is not helpful, and best not to self diagnose, as you explained. If I looked up malaria, I would probably have some symptoms for that lol. Good luck with your biopsy, it can be something minor, instead of cancer. Keep us posted.

Dear John,

Sorry you have to come on the roller coaster ride, but I welcome you with all my heart. I, too, have found great comfort in being a part of this group. Do not worry unduly until you have a firm diagnosis -- you want to save your energy so that you will be able to deal with whatever problem you may have with a positive attitude. Like you said, the journey of life will go on though you may have to make a detour as you move ahead, but that is life. Come back and keep us posted.

Hi "john81" do like me & do not google nothing about cancer. I tried that & got depressed very fast. The only thing I googled since then was today, to find a forum & even on here I am careful what I will read. I am too old to get stressed out. Bob

John81 - You have found the best place to come for the most accurate, up-to-date information on oral cancer. PLUS - you have the knowledge and experience and compassion of those who've been there and can share with you their first-hand experience. You don't have too much longer to wait for your biopsy so try to hang in there. Tell the doctor how anxious you are for the results. There might be a way to hurry it up a little. A biopsy is the only way to tell for sure if it's cancer and no matter how or why anyone gets cancer, the important thing is where do you go from here. It looks like you have already taken some very positive steps by seeing the ENT and scheduling a biopsy. Hope it turns out to be nothing serious but if it is you will be ready to start fighting it and you will have the support of everyone here. So let us know what happens, ok?

Hi there. Best of luck on your upcoming tests. I know it's scary to read here there were times when I couldn't read certain areas because it had my brain working overtime -

It's sounds pretty extensive, so likely not all of it is cancerous, though an ulceration that's been there a long time could be trouble. That's probably what they are looking at. HPV (often tonsillar, base of tongue, throat area cancers) usually manifest in people in their 40's- 50's though nothing is written in stone. Fingers crossed its an infection of some sort. Take care.

Thank you everyone - I will let you know how we go. x

Haha John

Love your advice about not googling. Back in the beginning of my working career I had bubonic plague, scarlet fever, polio and TB all in the same week. Funny how they coincided with what I was studying at the time . Luckily for me HIV had not been discovered yet ...

You have already worked out that "life simply must go on" so require no further advice, but we are here to support you and listen when you are unable to follow your own mantra.

John, I just wanted to say that I loved your post. I'm waiting on my ENT appointment (questionable spot on my tongue and now I've had a sore throat added to that) and I've felt and thought everything you said, especially the issues with HPV.

I'll be keeping you in my prayers and hoping everything is fine for you.

The waiting game continues. I had an MRI last week and the surgeon took several biopsies from my left, right tonsils and soft palate. I thought it was going to be painful after (my throat looks like a car crash now) but the procedure actually has stopped my sore throat and ear pain and for the first time in two months I'm not needing any pain control.

We saw the surgeon after who remained perplexed. He said it didn't look any better (which was a bitter blow to take, I have managed to maintain some strenght over the last couple of weeks through being able to see small parts of it seeming to clear up. I rationised this that he has spent 5 minutes in total looking with his (expert) eyes, but my inexperienced eye has studied it a bit more than that!) He was honest though and said he would be very surprised if this turns out to be anything sinister- I am young and he has never seen something this extensive in a patient my age (this could turn out to be a bad blessing!!!) Not what you want to pin your hopes to.

We are now in the final waiting stages then -the results are all due on wednesday and will be discussed by the clinical team. The surgeon said he will call if there is news (I don't think I can work that day- the most scary phonecall of my life).

The anxiety is so difficult to handle, I struggle to sleep one night that then just plays on your mind. Then I get an injection of strenght, but find my partner has been unable to sleep for her worry.

I must (try to) maintain my homour. Recovering after a general anaesthetic is odd. Over the coming days I discover the odd new bruises, my underneath of my tongue is the only bit that hurts-- it must have been clamped or something.

Thanks for reading and your comments above are of great comfort, in what are some of the difficult days I have faced. I remember my Dad going through a similar period of uncertainty, he was eventually diagnosed with pancreatic cancer, and this experience makes me worry more.