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.

  • Thanks for replying- please let me know how you get on x

  • No problem at all - I hope it goes well for you and you don't have to wait too long.  There are some lovely people on this forum and the Macmillan forum who will be able to give you advice, assurance and support!

  • hi my husband  has just been diagnosed  with  orapharynx  cancer he felt like he had something stuck in his throat in April  he went to the local walk in centre and was told its a blocked saliva gland and given antibiotics.  he then had to go  to the hospital because pain got so bad and was told  it looks like cancer. biopsy  ct scan mri   done and has T3 N1M0.    he starts chemo and radiotherapy  on 22nd  been told he will have to have feeding tube (peg)  while having treatment. I am trying to stay strong for him but I'm so worried

  • Oh dear I am sorry to hear that, Lou.  It must be a very difficult time for you and your family at the moment.  You will find many a supportive person on these forums and I'm sure you will get lots of advice and a friendly ear or two.  One thing I have learned from the research I have been doing while I have been going through the tests and waiting for the results is that these types of cancer are very treatable and have high cure rates - it will no doubt be a difficult time to get your husband through the treatment but the outlook is often very good and hopefully he will be able to make a gradual but full recovery.  Best wishes to you both and good luck with everything

  • So sorry to hear about your husband. I had tongue cancer - treatment was Jan/Feb 2021.

    It is quite normal to have a feeding tube because the treatment can cause difficulties swallowing. I had mine in for about 8 months until I was eating enough to not need it any more. It's a nuisance but you get used to dealing with it.

    I wish him all the best. It's not an easy road but there are plenty of people out there to answer any questions you may have.

    Susan

  • Well Susan, I had a call this afternoon from one of the nurses that works in the ENT department.  They told me they have the results - which I was pleased to hear - but they needed to pass them on to the consultant for him to review them and arrange an appointment to discuss them with me.  So while it is some progress, I am still none the wiser at the moment.  I had hoped that I would have had another call this afternoon to book that appointment to discuss them but the consultant doesn't have a clinic on Mondays so it will probably be tomorrow that I get an appointment to discuss them/hear any more news.  Very frustrating!

  • Always the waiting!

    I have had 2 different cancers in the last 2 years so know all about waiting. It's very frustrating. At one point, I went private to get another consultant to discuss the results with me because mine had gone on holiday, but hopefully, you won't have to do that.

    At this stage, a week is unlikely to make any big difference to your case, but I certainly wouldn't let it go past that before I was ringing the consultant's secretary for an update and when an appointment was likely. 

    At least you know they have the results. It's a case of them having to study them carefully so they don't give you any false results.

    Best wishes for a speedy phone-call for you!

    Susan

  • Thank you Susan - hopefully tomorrow I will have some further details God willing!

  • Hi Adam was just wondering if there was any update to you're situation? Hopefully good news