I am posting this question under the Q & A forum as it's not exactly a follow on from previous postings.

I have been told by my Consultant that I have cancer of tongue, tonsil tissue and soft palate.
I have had two biopsies which have both come back as pre-cancerous. However the consultant says he knows that isn't the case. He now wants me to go in to have a large biopsy done under General Anaesthetic so he can tell what stage my cancer is.
He said as I have an enlarged lymph gland,it has already spread and there is no point in taking a sample from the lymph gland as it will be the same as my mouth.

This lymph gland has in the meantime gone down quite a bit and I'm worried that when he does the neck disection (which he said is needed)it may not be necessary.
He has confirmed it is a hpv related tumour but I don't know how he can even say that if he hasn't got a proper bioposy.
Originally he said it would be part of tongue removed,radiotherapy and chemotherapy and neck dissection. Now he says that I don't need surgery on tongue as they do something else. Unfortunately, I didn't ask him to elaborate as I was getting on to my next question!
I feel really confused now and obviously it's great if I don't need surgery on my tongue but it seems as though things keep changing every time I go and I still haven't had a real diagnosis.
I think maybe his plan is to keep taking biopsies every few days and then he will just tell me he has now removed it all!!

Has anybody had anything like this happen to them or may know what's going on?

Original Post
Hi Sanjan,
worrying times! I had a very enlarged lymph gland for many months! A fine needle biopsy will give no result(mine didn't).
ENT eventually removed the enlarged lymph gland for a biopsy. I was told they would remove part of it but i think the surgeon realised the tumour inside was obvious and removed all of it as it was the safest and best option.

3 weeks later I had a neck dissection and a tonsilectomy.

Tell them to remove the lymph gland only and biopsy it.

all the best - tony k
Hi Sanjan,

I hate to say this but they weren't sure if I had lymphnode involvement and at first were just going to do my tongue and then radiation. Then made it my decision. I am glad I chose to do the tongue and neck dissection at the same time. They removed 28 lymphnodes one was positive and I am glad I did it. If I had not it would have been a second operation. But now I have mestasis to the lungs three tumors just a year later. Suggestion is to do the neck dissection. That is my opinion and would do it all over again. I can barely see my scar now. You can look at my album and see that. Oh and make sure they do a full body ct or atleast chest ct just to make sure. Just trying to lend advise.


Thanks Kenny,Tony K and Pam.
It is very difficult to decide what to ask for as obviously people feel differently.

I thought as I am going in for a tongue biopsy on Sunday anyway, I could see if the Consultant would do a fine needle biopsy on the lymph node at the same time. However as you say Tony, this doesn't seem to be much help.

I had fully resigned myself to the neck dissection when the node was big, but it's just now that it has got a lot smaller I'm beginning to wonder if there is actually cancer in it. Surely if it is cancerous it would get bigger not smaller?

Pam, I have already read all your posts and seen your album(what cute kids!) and I'm so glad you responded to me. When I read the post where you said it was now in your lungs, I was so shocked and upset for you. I was wondering how you got on in Ohio - doesn't sound like the best place to be. Are you able to consider Mayo or Dr Anderson as Mimi suggested?
I realise that would be difficult for you but you've done three quarters of your journey through Mouth Cancer hell so for short term pain but long term gain maybe you can get to be treated by the top guys.
Do you know if your cancer was linked to HPV?

I am having a CT scan on Wednesday to check chest and liver so finger crossed it hasn't spread.

I will be thinking of you to hear what you decide on.

Big Hug

Pam, it must have been such a shock to discover lung mets a year after your treaments - I wish you well. It's very sad for all our community here.

Sanjan. My lymph gland swelled to a large size within days. The cancer cells had just hit it and it was reacting to the infection - trying to fight it off!!
I felt so ill in a way That I had never felt before! - I knew it was serious - I said to my wife that I felt I was dying. I was in the hospital in no time at all!

The thing is, the fact the lymph gland had swollen so much in just 3 days made the docs think it wasn't cancer, after all a tumour could not grow so swiftly. But,as I said,The swelling was due to it fighting serious infection. Over a period of weeks I began to feel better. - I was "monitored" over the next few months (ha fcking ha!!!)

My swollen gland went down somewhat (a false sense of security crept in. An ultrasound scan showed......a large gland!!!)The very large gland decreased in size while a tumour grew and then spread into the next lymph gland. An FNA did fck all and, in fact, I blame it for puncturing the glands and allowing cancer cells to spread outside of the gland. I began to feel ill in a strangely different way to before a couple of weeks later.

DON'T be misled by the gland size decreasing. I had tumours 2cm to 3cm in size.Not big compared to the original size of the swollen gland. Big enough (in head/neck cancer terms) to be very problematic when it came to a neck dissection.

Biopsy the bastard!!

Tony k
Thanks Tony

I'm just about to head off for the hospital. I think like you I was being lulled into a sense of false security as the lump was going down - I hoped they were going to tell me that it was all a big mistake and I hadn't actually got cancer at all!! I know I have to be realistic.

The surgeon wants to remove all the glands in my neck when treatment starts anyway so I guess
it seems it would be best to safe rather than sorry later.He seems definite about it being cancer in the lymph gland.
Will let you know how it goes.
Good luck sanjan,
It has been 5 years since I finished treatment so I am obviously a lot happier now than I was at the time of diagnosis and subsequent treatment. When I reflect on the past the feelings of despair and anger come flooding back.

Tony k

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