Tonsil Cancer - Whirlwind Week

Hi All 

Firstly Hats Off to the NHS in Wales, they have been super amazing since my diagnosis on New Years Eve. Thank you all 

The title of the post is Whirlwind Week and this is why:

New Years Eve I have a phone call from ENT confirming tonsil cancer.  Very apologetic confirmed over the phone.  Wants me in for a biopsy.   Later the same day I get calls from ward team and covid test centre booking appointments.

Monday 4th January i have a covid test at 9.30am. Results back same day, negative for Covid19.  On route to test centre call from pre assessment team asking me to go in straight after my covid test for my biopsy pre assessment.   Forgot to mention biopsy booked for 7th January. 

Tuesday 5th January have an ultrasound at 9.30am and an MRI ar 11.00am.  The ultrasound was an external ultrasound of my neck. They decided to take two needle biopsies of lymph nodes which took some doing as the nodes were so solid they couldn't get needle in... Thank goodness for local anesthetic :)

From ultrasound they decided to send me for a 3d scan of my jaw.  This was done primarily in case I need any teeth removed pre radiotherapy treatment.  Apparently radiotherapy can cause your back teeth to crumble.  Don't panic not everyone has this done.  i believe it totally depends on size, position of tumour and the amount of radiotherapy you need.

After the jaw scan I went straight for my MRI.  Think I  had two 10 minute sessions,  the second 10 with dye injected into my blood.  I had also had this done for a CT scan on 18th December.

Wednesday 6th January day off.  Which I used to eat as many nice things as possible :)

Thursday 7th January 07.30am its minus 4 degrees c and I'm back at the hospital with my overnight bag ready for another biopsy, I was told to expect to be in hospital overnight.  Due to covid we have to wait at the entrance.  Just 3 of us, asked lots of covid related questions and temperature checked before being escorted to the clean ward.

The ENT surgeon comes to see me to explain the procedure.  Remember everyone is different.   So for me they are going to remove the good tonsil and send it for tests.  What? Not the bad tonsil?  The reason for this is because when you have cancer in one tonsil it is pretty much a done deal that you will get itin the other.   Also by leaving the cancerous tonsil in it allows for more treatment options.  If they cut it out there will only be one treatment path.

During the tonsillectomy they also took biopsies of my bad tonsil and my tongue.   After the op ENT told me that it would take about 7 days for the results so they expect to be calling my Wife and I in a week on Wednesday. 

I was allowed to go home as long as I had eaten something, drunk something and had a pee.  I was home by 7pm the same day.

Sunday 10th January its 6am and I am sat in bed writing this post.  Next to me is a glass of water which I sip all night, my 6am pills and a lip balm.  My bottom lip took a battering during surgery and is very swollen and sore.   The cancerous side of my throat and shoulder is still painful and the right side is even more painful from the tonsillectomy.  Even my lymph nodes seem to be complaining  :)

But you know what, I don't feel sorry for myself,  I don't feel sad.  I'm going to lose weight, but hey I'm 5ft 6inch and 13 and a half stone (male) i could do with shedding a few pounds ;) 

I know this is just the start of a long hard journey,  but I'm ready... bring it on I say!

Parents
  • Hi,

    Im 23 and i suffer with anciety really bad.

    I have known for a while that one of my tonsils have been bigger than the other but thought nothing of it till last week when i read on google that one bigger than the other is a sign of cancer. Ive been reffered to ent but they said thia could be up to 12 weeks waiting list. 

    Im really worried that its the worst, i cant get it out of my head. I wish i went sooner about it but its never actually bothered me and i dont know how long it has actually been there as its not something i check. 

    I have had bloods and they were all okay and my lymph nodes are feeling okay as the doctor checked these last week 

    Thanks.

  • Hi Flopsy2

    I appreciate that any changes in your body can be frightening, especially when you are young and suffer with anxiety.

    As I am not medically trained all I can do is try and help reduce your anxiety a bit. 

    First stay off Dr Google, no good ever comes of that.  You can put any symptom in Dr Google and eventually it'll tell you you may have cancer. 

    Second, an enlarged tonsil can be soooo many other things.

    Third, you have youth on your side.  I am 51 and even for someone my age neck cancer is very rare.  Cancer as a whole is rare for someone your age.

    Fourth, 9 out of 10 people sent for tests come back negative for cancer.

    If your doctor suspected cancer you would generally see an ENT specialist within 2 weeks.  That said Doctors are only human so I would suggest if your symptoms worsten or you have new sympoms such as an enlarged lymph node, ear ach etc then contact your doctor agian and ask if you can have an urgent referal.   If the doctor says no, kindly ask why.   Be honest with your doctor regarding your anxiety.

    Try not to worry, easier said than done I know.  But anxiety its self can make you feel poorly and down.  

    What I do to help with the worry is break each day down with doing things that make me smile and or simply make me happy.   If you do that your body will produce its own happy drugs which will help to not only make you feel better, it'll also make coping much easier no matter the outcome of your tests.

    Hope this helps and good luck moving forward.

Reply
  • Hi Flopsy2

    I appreciate that any changes in your body can be frightening, especially when you are young and suffer with anxiety.

    As I am not medically trained all I can do is try and help reduce your anxiety a bit. 

    First stay off Dr Google, no good ever comes of that.  You can put any symptom in Dr Google and eventually it'll tell you you may have cancer. 

    Second, an enlarged tonsil can be soooo many other things.

    Third, you have youth on your side.  I am 51 and even for someone my age neck cancer is very rare.  Cancer as a whole is rare for someone your age.

    Fourth, 9 out of 10 people sent for tests come back negative for cancer.

    If your doctor suspected cancer you would generally see an ENT specialist within 2 weeks.  That said Doctors are only human so I would suggest if your symptoms worsten or you have new sympoms such as an enlarged lymph node, ear ach etc then contact your doctor agian and ask if you can have an urgent referal.   If the doctor says no, kindly ask why.   Be honest with your doctor regarding your anxiety.

    Try not to worry, easier said than done I know.  But anxiety its self can make you feel poorly and down.  

    What I do to help with the worry is break each day down with doing things that make me smile and or simply make me happy.   If you do that your body will produce its own happy drugs which will help to not only make you feel better, it'll also make coping much easier no matter the outcome of your tests.

    Hope this helps and good luck moving forward.

Children
  • Thank you for replying so quick.

    The actual doctor did refer me as urgent on the phone to ent but they were the ones that maybe didnt think it was urgent, as far as im aware anyway. 

    I dont have any other symptoms, all lymph nodes are how they should be etc dont have a sore throat, only occasionly but thats surely normal? 

    I just panic cause it is quite alot higger than the other and it does have a tonsil stone on it to, i have tried to remove that but my gag reflex is awful. 

    The doctor said i may have to have a MRI or have them removed..this alone makes me think they think its something bad. 

    Is it a good sign my bloods came back clear to?

    Sorry, i just find i need reasuring that everything will be okay. 

    Thanks.

  • Dear Flopsy

    As my friend said you should try not to worry too much as it is uncommon. Saying that only the doctor can tell you if everything is going to be ok so ask for a telephone consult and ask questions get their opinions and take it from there. If the ENT were concerned believe me you would be referred for that MRI quickly. 

    take care

    Elona

  • You're very welcome and no need to apologise for wanting help and reassurance. 

    As Elona says if the Dr or ENT believe it is anything serious they will act super quick,  hence the title of this thread 'Whirlwind Week '

    There is a saying 'Don't cry over spilled milk'.  At the moment your anxiety is causing you to cry over milk thats still in the bottle.  Milk that hasn't yet spilled, nor probably ever will.  If against all odds that milk does spill we're all here to help you mop it up.

    Clear bloods is good for many reasons.  All an MRI means is that your local NHS is looking out for you.  I know I've already said this, but 9 out of 10 people sent for tests are negative for cancer.  

    The odds are very much in your favour.

    Do something that makes you smile today. 

     

  • Thank you.

    Juat no matter how much i try i cant get it out of my head, ive never ever needed anything doing in hospital..so hospitals give me mega anxiety. I also worry with covid if things are delayed and something is going on there missing it. 

    As i have said previously i dont actually know how long its been like it as it never bothers me, but you guys have said yours in painless so i just think the worst.  I now have this feeling in my throat as if i have a lump, ive has this for like 3 days so i imagine thats down to mumy anxiety as it has been mega high! 

    I just want to know everything will be ok.

    Thanks.

  • Hi

    No matter how much someone tells you not to worry it wont stop you worrying.   In fact its probably one of the most useless things anyone can say.

    But people can try and reduce your worry and show care by saying try not to worry too much and then back their reasoning with hard facts.

    You are going to worry, we all have.   Its how you deal with that worry that matters.  To be perfectly honest as a cancer patient, up to now the pre diagnosis has been  the hardest part so far.  The not knowing.  So I totally sympathise with you.

    However I never said it was painless, far from it.   I was diagnosed on New Years Eve 2020, I have been in pain every day since May 2020.  It was the initial pain in my throat and ear ache in May that made me notice my enlarged tonsil.  By November the pain worsened and was joined with a big enlarged lymph node and difficulty swallowing.  I was also suffering with fatigue and headaches.

    As for hospital the staff are beautiful caring people who are experts at putting you at ease.  MRI machines are noisy but painless.  

    As a Mummy it is natural to be more anxious.  

    Please be strong and positive,  it'll help you more 

     

     

  • Hi flopsy, I just wanted to mention that you are not in this alone, I have had some symptoms that are worrying me for weeks now. I have been in and out of doctors/dentists/pharmacies trying to ask for different help. I suffer with health anxiety and it's literally taken over my life! 
    I have one swollen tonsil to the right and I can notice it but my dentist seems to think they both look swollen and it's mild tonsillitis. Previous to this I had no pain and a day later I have pain that comes and goes, with redness all over My throat and tonsils. I have had issues with my Tongue and other places in my mouth which have been there for about 3/4 weeks and over the last few days majority of my symptoms have reduced dramatically. Just one little ulcer looking thing that will not bigger off(worried? Yes) I am hoping that this is a good sign. 
    I too have a lump in my neck but the opposite side to the convinced swollen tonsil, which I am having an ultrasound on tomorrow to rule out anything sinister. I also have white on my tongue which isn't going with thrush gel, but then I have only been using it for 2 days. I have convinced myself over the last 3 days that I have a lump in my throat when swallowing saliva alone, could be something or could just be anxiety as I know I suffer with this. 
     

    everybody I have spoken to on these sites have tried to reassure me so much, and in some ways they have, constant googling and reading others stories is what has set me off as now I'm convinced it worse case... even though so many professionals aren't worried. 
     

    I am really glad u have been referred to an ent and I hope and pray that all your checks come back clear xxxx

    dragonfach good luck for Tomorrow and Thankyou for previous advice on previous posts xx

  • I have no other symptoms but i know the tonsil has been that size for a good few months. All my frienda have said that if it was something sinister that something would have cropped up in my bloods. 

    Im juat worried that the ent appoitment is going to be weeks yet and my anxiety will take over. 

    Thanks.

  • To be honest with you I'm sure my tonsil has been like it for months too, but can't  be sure. My mum said to me not long ago. Sometimes you see something you have never seen before... then you investigate, and investigate some more until it becomes a problem and anxiety sets in, what you are investigating could be a normal part of your body and you have to try and let it go. In a way she is right, but when you suffer with health anxiety the reassurance doesn't last very long.. I know first hand. 
    someone else said to me, it's not cancer until proven wrong... try and think like that, so that your anxiety doesn't take over your life. 
     

    if you are really really worried then push for your ent appointment to be earlier, I don't know if this will help. I have another phone appointment with my doctor tomorrow to see what she says about my tongue, cos now my other symptoms have eased I'm convinced something else is wrong! 
     

    (I look at my advice given and sometimes wish I would take it myself.... anxiety sucks!!) 

  • Yeah one of my friends actually said to me, for all you know it could be the normal for you. But i think once you have read tonsils different sizes are a sign of cancer you automatically think the worst. 

    I think im going to be waiting a while for ent as ive already phoned again and they said they cant rush it. Im just very nervous of even going to that appoitment as i just never had to have anything done in hospital before. I suppose im lucky its just an enlarged tonsil i have and no other symptoms surely thats a positive sign? 

    How come you are having an ultrasound? Hope all goes well. 

  • Exactly I try to think that too but my head spins with what I read. And of course google is telling us that it is abnormal to have one tonsil bigger than the other. When my dentist said my tonsils looked red and swollen I immediately asked her if it was one or both and she said both which is odd cos I tangibly one is bigger than the other and I also asked if she thought I had tonsil cancer and she said no. Everyone says to me these professionals are there to pick up these abnormal things and if she was concerned she would have said. But that still didn't ease my mind. Now I think I have tonsil and tongue cancer... this isn't the first time I thought Iv had cancer either it's been a whirlwind few years lol. 
     

    oh that's a bit pants, well hopefully u will get ur appointment through sooner rather than later to ease your mind. Il be thinking of u! 
     

    I have a pea size lump in my neck which I noticed around November, saw my GP last week after 2 phone appointments and she has referred me for an ultrasound to rule out anything sinister but she thinks it's a cyst! Still doesn't stop me from worrying though! Xx