Hi Daniel

Chanced upon your post and wondered what the outcome was.  I have very similar symptoms as you and am anxiously waiting for MRI results. Is it true that an MRI might not pick up tongue cancer?  It's my tongue that worries me.  Doctor said it was normal papillae but doesn't look healthy to me and gets sore sometimes.  I also had a really anxious year and my doctor was putting everything down to anxiety.  Hope she's right.  Hope you have recovered from whatever you had.

Diane

Hi Diane,

Thanks for replying.

Unfortunatley I am no further forward with any sort of diagnosis. In June 2021 I received another referall as I had another lymph node under my jaw at the back of my tongue, my tongue on the back left below to tonsil also developed inflamed tissue that looked ulcerated.

I requested a PET CT scan as this would show any hot spots for the cancer or a biopsy of the tongue / lymph nodes and was told I could not have a PET CT unless you were already diagnosed with cancer and that they wouldn't biopsy the lymph nodes or tongue because they look in normal range and these symptoms were likely nerve related. 

I've had more physiotherapy (he also thinks pain stems from tonsil and tongue), mental health therapy, cognitive behavioural therapy, nerve tablets and plenty of antidepressants with no improvement. I have anxiety, i'm dealing with the anxiety, all I can do is try and control my thoughts but they've said themselves it won't take the pain away.

My symptoms have worsened, I now have pain moving and extending my tongue at the back, constant hyoid bone pain where the base of tongue attaches, really bad ear pain and difficulty swallowing, all on the left daily alongside the persistent swollen lymph nodes with the ones under my tongue being extremely painful aswell as my floor of mouth and salivary glands being sore and tender to touch and neck and collarbone pain extending into the armpit. 

I'm not a doctor, but the majority of HPV oral cases I have come across (which is a lot more than I thought for a rare cancer) are in the tonsil and back/base of tongue rather than the side. The majority had clear scans, particularly MRI, even with really big lesions and lymph nodes and were only diagnosed after biopsy (after many consultations) or only by PET CT scan.  It is an extremely clever cancer and does not want to be found. 

Constant pain and symptoms for a long period of time is not normal for anyone of any age and should be investigated further. We know our bodies and know when something isn't right and unfortunately my age is a major factor in why I am getting discharged after every consultation with no check up appointments or review. I'm someone who never goes to the doctors, doesn't have health anxiety and hate's asking for help and when I have I feel like nobody is listening or taking me seriously. 

I wish you all the best with your MRI results and please let me know how they turn out, i'll keep everything crossed for you. If you have no results from your MRI my advice would try to get a biopsy. It's invasive and they'll not want to but there's a reason we have pathology and there's a reason why they do biopsies even still when people are diagnosed by scans. I'd personally rather know for sure than live another day like this.

I'm mentally and physically exhausted and I keep putting it off - I'm going to have to go private and try and push for the biopsies as there's too many confidences alongside a HPV lesion and i'd rather categorically know. I can't really afford it but my life's been on pause for almost a year and a half and I honestly hand on heart believe I have HPV cancer, and regardless, my symptoms are worsening... something isn't right and I think i'm going to have to fight to get any sort of diagnosis (Good or bad)

Keep me updated, I really hope you figure things out either way, i'm rooting for you! 

Daniel

Hi Daniel

Thanks for replying.  Sorry to hear you have no answers.  I know exactly what you mean by being physically and mentally exhausted.  I've been arguing with friends, family, doctors for nearly a year. Doesn't seem to matter what your symptoms are, they think you need psychotherapy.  Sometimes I wonder if they hear what I'm saying.  Just had a chat and cry with my sister.  She seems to think I have OCD.  I'd laugh if it wasn't so serious.  I too have been prescribed various anti depressants.  I decided to stop taking them, against my doctors advise, as they were giving me added symptoms making it difficult for me to know what was going on with my body.  I've recently gone back on one of them.  My thinking is, if the diagnosis is cancer, I'm going to need them.  I don't know where the strength will come from if I have to go through all the horrible treatment.  I'm quite like you.  I do a lot of research.  I don't think the doctors like that.  They do not like being told what you think you might have.  Don't give up Daniel.  Get some strength to carry on.  You are very young.  Go private if you can.  I paid a small sum to talk to a gastroenterologist when I thought my problem might be further down the track.  He put my mind at rest without having to have any tests.  4 days until my MRI results.  I'm going to start summoning up some strength from somewhere

All the best

Diane

Hello Hazel

Can I ask what tonsils had the cancer.  I didn't realise we had 3 sets of tonsils. I'm assuming my problem might be the tonsils on the back of the tongue (lingual).  The ones you can see clearly look normal to me. Is your tongue affected?  Also, how big was the tumour, and how long do they think it had been growing?

Regards

Diane

Hi Diane my tumour was in the tonsil you can see but the tumour was buried in the tonsillar crypt so it was hidden. I had spread to the soft palate. Yes you have tonsillar nodes in base of tongue but also mine  had spread ti 7 lymph nodes in neck. The tumour was 3 cm in size it was burnt away with radiotherapy and chemo like the lymph nodes and my uvula dangly bit at back of throat. My tongue was also in the field of radiation so I had ulcer from burning  full length of tongue. Because the treatment is so intense all my mouth snd tounguevwas burnt so it's a case of I have to live with what I'm left with. Some days  it's fine others many foods give me a syndrome called burning tongue. Cheese chocolate spicy foods crisps no alcohol st all as it all inflames. Some days even water. It takes a good while to be comfortable eating out as menus snd compsnybcan be difficult. As for how long no one knows it coukd have been a long time as I had no symptoms until March 2018 whrn lump appeared on lymph node we were away on ectrnddd holiday so I put it to bsck if mjns until May on our return I was put  straight away on cancer pathway. Luckily I had a fantastic oncologist who explained my cancer was csuddd by h p v 16 plus which was curable but the treatment took me as low as my body could go. I am now 3.5 years post treatment. I hope you don't but if you do it's curable but hard. 
how old are you ? If you don't mind me asking 

good luck Hazel 

Hi Hazel

I'm 61.  62 end of Feb.

All I know is I have some enlarged sore spots (papillae) right at the back of my tongue on the edge.  To be honest, I have no idea what the results will show.  Most of last year I was suffering with right sided neck pain all around the big muscle.  This was constant.  No enlarged nodes that anyone could feel so put down to physio and anxiety.  Didn't seem right to me.  The pain was weird. Towards the end of the year I started getting pain across the bottom of my skull and also mildly the left side of my neck. It was quite alarming but doctor didn't seem to respond.  Saw ENT consultant.  He said all looks fine.  Thinking back, he didn't look at the edge of my tongue.  Strangely, the pains have calmed down.  It's really scary to think that you can have cancer and feel absolutely fine.  It's all very odd.  Most of the pain I had was during the night.  It was really intense and all coincidentally where there are lymph glands.  I tried contacting the consultant a few days ago for some reassurance. My scan was on 17th Jan. He's been really helpful in the past but he seems to not want to talk to me.  He knows how anxious I've been and I really think he would have got a message to me if there was nothing to be concerned about.  Wednesday could be the day my life changes.  If it is C, I'm hoping it's hpv related even though when I first read about this I felt real resentment to my partner.  We've had some terrible episodes over the past few weeks because I've been so terrified.  Unfortunately, I've looked up everything, even very technical, medical journals.  Waste of time really.  Just terrifies you.  I suppose, I have no control and just have to trust in the experts (although it may be them that have let me down so far).

Do you know anyone who has had Cancer starting at the back/edge of tongue?  My life is just on hold at the moment. 

Diane

Hi Diane  yes lots with base if tongue cancer. Please stop reading medical journals unless you're a dr you aren't qualified honestly. As my oncologist said if you're going to et csncer this is the one to get. Treatment brutal sucess rate 90 % of us make it to  5 years. I'll tsje those odds. With base if tongue cancer the treatment doesn't effect eating as much as mine did. As msinntindiks efffct mouth lining as well. Please keep busy until Wednesday if yiu need me shout. Otherwise let me know xx

eill reiterate Keep off google. Read my blog see his I'm living life now ok done stuff is hard ti eat but better than alternative Ley met me know huw Wednesday goes xxh x

Hazel, Hi

I wanted to let you know that I had good news from the consultant.  No cancer.  I'm a bit shell shocked because I was totally convinced I had it.  I even thought it had become advanced, but to my utter amazement and thankfulness, consultant says 100% not.  Nodules on thyroid that he says are fine, and could give similar symptoms.  I've just spent 10 months of my life in a terrible place.

You are an amazing woman doing an invaluable job for those who need it.

Wishing you a happy joyful life.

With thanks.  Diane

Daniel

My MRI results are good.  No cancer.  Thyroid nodules but nothing sinister.  Like you, I was completely convinced my symptoms pointed straight to cancer.  No one or nothing could change my mindset.  I'm not going to look up Thyroid nodules on the internet because I will find something to worry me.  I'm 90% trusting my consultant, and will work very hard on the last 10%.  It's going to take time but I want it to be true.  Strangely, since I got the news this morning, my glands have not hurt at all.  

I wish you all the best Daniel.  

Diane