Undergoing tests for possible tongue cancer

Hi all!  I am new to this forum having joined today so I thought it best to introduce myself and let you know about my situation.  Hopefully I will be able to have some useful conversations with fellow travellers who are going through or have been through this very difficult and emotional experience.

A couple of months ago I noticed I had an odd sensation that something was stuck in my throat.  It wasn't causing my any pain or discomfort as such but it was a noticeable sensation like having a hair or small piece of food caught at the back of my mouth/throat that would not go away.  Initially, I thought it would pass of its own accord but after a few weeks I decided to have a good look to see if anything was amiss.  It's surprisingly difficult to see the back of your mouth but with a torch and a mirror I was able to see very clearly that on the edge of my tonge, right at the back on the right hand side I had a noticeable puffy growth that was a few centimetres in size.

I tried making an appointment with my GP but could only secure an appointment with the assistant nurse at my surgery the following day.  As I was quite apprehensive, I decided to get things seen to sooner rather than later.  The nurse was lovely but really struggled to explain what could be the cause of the lump and called on a more experienced colleague to also take a look.  Both were unable to advise what could be causing the problem but assured me that it was probably nothing and to contact the surgery to see the GP in two weeks if the growth had not gone away so that the GP could refer me to an ENT consultant.

Things played on my mind for the remainder of the day and here in Wales there are significant backlogs for NHS treatment with ENT departments some of the worst affected.  As such, I decided to approach a private healthcare provider and was able to secure an appointment with a private ENT consultant two weeks later.  This consultation cost £160.00 for those who may be considering making a similar step.

The consultant was very pleasant and listened to my concerns.  He carried out a full examination of my nasal passages, my ears, felt for any swollen lymph nodes etc and carried out a detailed examination of the lump on my tongue.  The consultant spent a long time looking inside my mouth in silence which added to my concern.  After completing his examination, the consultant advised that he was also a consultant at the large NHS hospital close to where I live and said that he had some concerns about the growth (he referred to it as a lesion) and that he wanted to move quickly to investigate what was wrong.  He explained that in situations such as this, he would never put patients into the situation where they would have to decide to continue treatment privately (at great expense) and told me to attend his NHS clinic at the NHS hospital the following morning.  He told me he didn't care what time I turned up - just to turn up full stop so he could carry out further examinations and consider the next steps.

The following day I turned up at the NHS hospital and was seen very promptly.  I was given an anasthetic spray up my nose to numb my nasal passages so the consultant could insert a camera up my nose to have a look around the back of my mouth and the top of my throat.  Because of the spray, this caused no discomfort at all.  The consultant explained that he couldn't see that there were any other growths or lesions with this preliminary examination but the growth was a cause for concern and not something that should be there.  As such, I would require a CT scan, a biopsy and a more detailed endoscopy.  All of this was put down as urgent referrals.  

On Friday, I had my CT scan which scanned my neck and chest.  This was a suprisingly quick procedure and despite warnings of feeling like I would wee myself from the contrast medium they inject into your arm, I felt no such sensations I am happy to report!  I am told the results can take up to three weeks at the moment but my consultant may decide to review the images himself without a specialist radiographer's input so I may have some results sooner than that.

Today, I had a call to arrange my biopsy which is booked in for July 12th.  I am hopeful that the results from this will reveal that I have something totally benign causing the lump in my mouth and that I won't have to wait too long to get the results (though I am deeply impressed with how swiftly things have moved so far).

Other than the lump on my tongue, I have no real other symptoms to speak of.  To the best of my knowledge, I have no swollen lymph nodes anywhere and other than some fatigue and anxiety I have no other symptoms.  The lump does not cause me any pain or discomfort though I am aware it is in my mouth.  I know I have been infected with the HPV virus about twelve years ago and that this can be a cause for oral and throat cancers - mercifully, these seem to be much more treatable than cancers that are not caused by HPV infections.  

I apologise for war and peace but I thought it would be helpful for fellow newbies to understand how things work in the early stages of any diagnosis.  I will be completely honest - having studied my symptoms in some detail, I am struggling to find any other possible cause for the growth in my mouth other than cancer.  I absolutately hope that I am wrong but at the moment I am being optimistically pesimistic - I am hoping for the best but preparing for the worst if that makes sense.  It's a difficult time for me and my partner as I am struggling to think of much else - the not knowing with any certainty is a very difficult thing to deal with.

I'm more than happy to chat or answer any questions you may have and I would be very keen to hear from anyone who has gone through something similar or is going through something similar at this point in time.  This looks like a very supportive, helpful and understanding community and I'm keen to play my part.

Many thanks,

Adam.

  • Hello Adam and a warm welcome to Cancer Chat, 

    Thank you very much for sharing your experience in detail and all the steps you have been through so far. It will be useful to others who are currently going through something similar and are in the early stages of diagnosis. 

    It's easy when looking things up online to imagine the worst case scenario as Dr Google tends to come up with our worst fears and we end up convincing ourselves that we have cancer. But the truth is only the medical experts will be able to give you a definite diagnosis based on your test and biopsy results. Having to wait for results can be nerve-racking but there are helpful tips on this page to help you cope while waiting for important news. While you are waiting, try if you can to resist the temptation of looking things up online and keep busy and distracted if you can. 

    Thank you very much for offering to answer questions and to support others who are in a similar situation. I hope that you will hear from others who have gone or are going through something similar and that they will be along shortly to share their story with you. You are right that this is a very supportive and understanding community and we are pleased to have someone like you in it who is there for others who find themselves in a similar place. 

    Best of luck for your results. I am keeping everything tightly crossed for you. 

    Best wishes, 
    Lucie, Cancer Chat Moderator

  • Hi Adam, I read your post the other day and it is very similar to what I have/am going through.  I had a biopsy on the 8th and I am waiting for results.  How are you after your biopsy?

     

  • Hi Lou - thank you for getting in touch.  My biopsy went surprisingly well on Tuesday - initially I was down to stay in overnight but thanks to a couple of cancellations I was able to have my procedure completed a little ahead of schedule and was able to come home later that day.  So far, just a little bit of discomfort but not as bad as I thought it would be.

    The waiting is now the difficult bit but I've been told that I should hopefully get my results next week which is a lot quicker than I thought.  Have they said how long you need to wait for yours, Lou?  Hopefully it is not too long.

    I've got to have an ultrasound guided biopsy next Friday now to check the lymph nodes in my neck are OK and the consultants did mention an MRI scan when I spoke to them on Tuesday.  All in all though so far things have moved quickly and smoothly.

    I'm sorry you find yourself in a similar position, Lou - it is a very difficult thing to go through and I hope everything works out OK for you.  If I can help at all, please let me know - I will keep you posted with any developments.

  • Hi Adam, its good that you did not have too much discomfort from the biopsy, I wish I could say the same but today, day 6, there is a definite improvement.     My journey actually started 3 years ago when. I found a lump on my neck. I had an ultrasound and biopsy that confirmed cancer in the node HPV 16 positive.   After that I had a panendoscopy, CT & PET scans.  The diagnosis was an unknown primary tongue cancer and I had a neck dissection without any radiotherapy or chemotherapy, they removed 29 nodes and only 1  had cancer cells.   3 years later (around March this year) I noticed new  lumps in my neck, same side and that my tongue was raised and swollen on that side too.  I had another ultrasound/core needle biopsy and the nodes are positive again.  The next stage was another biospy base of tongue and a CT scan yesterday.  I will be meeeting with my consultant next week for the results.  The waiting  is indeed  difficult but this time I am desperate to get an answer and a treatment plan.   They  do not know if this is the original tumour or a new one, they still have not found any tumour and if it does not appear on the CT scan then I do not know whats next.  It is all very worrying.  If anyone else has had a similar experience I would be glad to hear from them too.   

  • Oh dear it definitely sounds like you have gone through an awful lot over the last three years, Lou - it can't have been easy and I hope things work themselves out for you.  So far, I have not noticed any swelling in my neck which is a positive sign.  I hope you get some good progress soon, Lou

  • Hi Adam, Hi Lou 

    I hope you are both well (as can be expected)

    I too am going through similar, I found a 'growth' on my tongue around 4 years ago. I was told many times it was an ulcer and nothing to worry about, some days it would be zero problem, other days it would be a nightmare.

    Finally it was agreed they should biopsy and in September last year they biopsied and removed the growth in full (minimal margin due to growth in the meantime) The results came back moderate to severe dysplasia and I was advised they would monitor on a monthly basis for a year or so. Late June it returned on a broader scale!!!

    Five biopsies , 8 injections and 10 days later the pain is still very much real .... waiting on results this week :( 

  • Hi, I've just joined this group and this is my first post. I am also undergoing tests for a possible cancer at the far back of my tongue. I felt like something was irritating the back of my throat about 8  or 9 weeks ago and then felt a small lump with my finger. It didn't go away and actually gre slightly in size. I went to my GP, who examined me and sent a couple of photos of it to a consultant for a second opinion. Then I was told to go to a dentist to let them have a look. The dentist then made an urgent referral to my local hospital in north wales. I have had two appointments there and had a biopsy 4 days ago. They are fast-tracking it to try a get a result in two weeks. 
    I am really anxious right now x

  • Dear me that sounds like quite an ordeal, Elsie - that is a very long time to live with so much uncertainty.  At least it is on the radar of the professionals now and hopefully they can react quickly if anything untoward happens (though hopefully it won't come to that).  I hope you have had some good news since you last posted - I've unfortunately been experiencing a lot of delays and confusion in getting my results...

  • I really sympathise and it sounds like you are going through a similar experience to me.  I hope you get your results soon.  Unfortunately, I have been experiencing lots of delays in getting my results - it has been about five weeks since my biopsy and despite two appointments to get the results (one was cancelled by the hospital, the second they discovered the results were not available) I am still waiting to hear.  My advice would be to be patient and keep in touch with the hospital to ensure you find out as quickly as possible.  I am hoping to hear my results tomorrow or Tuesday - it has been a very worrying, anxious time for me and my family.  One thing I will say which I hope gives you some comfort - 90% of all biopsies come back non-cancerous and the chances of having cancer are quite small so hopefully this will turn out to be something benign that can be treated effectively.  Wishing you the best of luck!