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 tongue, 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 anaesthetic 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 surprisingly 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 absolutely hope that I am wrong but at the moment I am being optimistically pessimistic - 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.
Hi Adam and welcome from me too. Your story is remarkably similar to mine. I found my cancer myself and new immediately what it was. I am a retired veterinary surgeon. I was asked weeks later when my diagnosis was confirmed what on earth prompted me to look (for look read "have a good poke around")
My referral from my GP was a matter of professional curtesy as he wasn't convinced. It took ages and a phone call to the department revealed that some clerk had downgraded my appointment to non urgent. I played merry hell with them. I had already arranged a private ENT appointment, exasperated with waiting. My Consultant appointment came in on the same day so I cancelled it.
I too had no symptoms. I simply felt strange. My consultant showed me an area at the back of my tongue which he considered normal but you can't stop a good woman when she gets going. I left that department with an appointment for an MRI.
His words at my next appointment were, "sorry but your diagnosis was correct"
I had no lymph node involvement and an 18mm base of tongue tumour which became 25mm by the time my RT started. I escaped chemotherapy.
Lucky you getting anaesthesia for a scope...I never did but my oncologist is pretty slick with them. We get used to them.
To cut to the chase I had a few unpleasant weeks with treatment and recovery and I'm still here three and a half years later
Having said all that, You don't know you have cancer till you know and 90% of referrals prove to not be.
I am in South Wales too but Swansea so I was treated at The Singleton and my care is at The Morriston.
I did have my PET/CT at Cardiff where they have all the cool stuff.
Fingers crossed you don't need us
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
