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
  • Hello, 

     

    firstly thank you so much for posting your experience for us all. I take my hat off to you I really do. Could you please tell me what gave you the tonsil cancer diagnosis in the first place? I am in a very similar situation. 
     

    I have had the nose scope twice down the throat, I've had an MRI, a tonsillectomy (for biopsy) and on the 8th of Feb I'm having the core neck biopsy. 
     

    Basically my right tonsil was swollen for months post numerous spouts of tonsillitis and left 2 papillomous spots visible. Unsure how long they had been there only noticed because dr examined mouth after being sick. This has now been biopsied and I'm recieving results on the 8th coming. 
     

    After my MRI a 2cm lump has been found in my neck which is being biopsied also on the 8th with the needle I guess you are talking about? 
     

    Your experience seems to be the closest to mine that I've seen on here but it's obviously the complete other way around and I am scared obviously but also just dealing with what's to come. If you can give me any advice towards my situation it would be so helpful. No one understand what I'm going through right now and im so thankful to have come across yourself. 
     

    God bless you and I wish you a healthy recovery .. I just don't understand why I've been through the same as you but nothings been confirmed yet :( 

     

    Hopefully speak to you soon xx

Reply
  • Hello, 

     

    firstly thank you so much for posting your experience for us all. I take my hat off to you I really do. Could you please tell me what gave you the tonsil cancer diagnosis in the first place? I am in a very similar situation. 
     

    I have had the nose scope twice down the throat, I've had an MRI, a tonsillectomy (for biopsy) and on the 8th of Feb I'm having the core neck biopsy. 
     

    Basically my right tonsil was swollen for months post numerous spouts of tonsillitis and left 2 papillomous spots visible. Unsure how long they had been there only noticed because dr examined mouth after being sick. This has now been biopsied and I'm recieving results on the 8th coming. 
     

    After my MRI a 2cm lump has been found in my neck which is being biopsied also on the 8th with the needle I guess you are talking about? 
     

    Your experience seems to be the closest to mine that I've seen on here but it's obviously the complete other way around and I am scared obviously but also just dealing with what's to come. If you can give me any advice towards my situation it would be so helpful. No one understand what I'm going through right now and im so thankful to have come across yourself. 
     

    God bless you and I wish you a healthy recovery .. I just don't understand why I've been through the same as you but nothings been confirmed yet :( 

     

    Hopefully speak to you soon xx

Children
  • Hi Syraya

    Nice to speak to you and as you said it is always useful having someone in a similar situation. 

    My friend has definately been diagnosed with cancer I have not yet. 

    The diagnosis depends upon how obvious the signs and symptoms are. It also depends upon any biopsies and histology results. As you will no doubt have been told 9 out of 10 do not have cancer or at least cancer that has spread and causes problems. 

    I had an aspiration biopsy probably what you are having and that came back inconclusive so I am having a proper biopsy of my neck on the 8th as well under a local anaesthetic. ~T~his is going to be using a spring loaded biopsy punch that takes a sample of the lump rather than a few cells as in an aspiration. This will then be sent for histology so it will be stained and examined under a microscope for the different cells. Cancer shows up as unusal shaped cells as well as proliferation of the area. 

    Both of us had the aspiration, MRI, bloods, and tonsilectomies. I had my bad tonsil out and DragonFach had the good one out so it didnt spread - this varies due to clinicans thoughts of treatment. 

    Lumps can appear due to bad infections and viruses so try not to get too worried I always believe in no news is good news. 

    Usually two weeks is the time for histology results to come back then they discuss your case before they get back to you but they can let you know earlier. Make sure you ask lots of questions if possible this helps put your mind more at rest and let you know exactly what is going on. I know what it is like though very frustrating when you dont get a conslusive answer. 

    let us know how you get on. It is good here to keep in touch helps us get though this and make friends. 

    be positive.

  • Hi Srayra 

    Welcome to the thread.

    I think my amazing friend Elona has pretty much covered everything. 

    I sympathise with you as although I have cancer, when I was in your position (having tests and waiting the reults) it was definitely one of the most difficult parts of the journey mentally date.

    This may sound strange but I was relieved when I got my call, even though it was confirming cancer.  I mentioned this strange relief to a nurse, apparently it is relatively common.  The not knowing is very hard to deal with,  what I did was to break down each day trying to do things that I enjoyed or made me smile and laugh.  Anything to detract my mind away from the uncertainty. 

    Like Elona said 9 out of 10 people who go through tests are negative for cancer.   That figure is for all cancers, head and neck cancers are classed as rare so the odds are even less.  Although rare they tend to be one of the quickest to catch early, one of the most successfully treated and one of the least likely to spread. This is why you've found it difficult to find people like Elona and myself on here.  I was so relieved to find Elona,  its a comfort to chat to those in a similar situation as no one will understand you better.

    If you are scrolling Dr Google my advice is to stop.  Here, Macmillan and maybe the NHS sites are all you need now.   Dr Google does very much have its place if used wisely.   If used without caution it can lead you down a deep dark hole.

    Most importantly, as hard as it can be some days, stay positive.   We all get our ups and downs,  no matter how you feel post here one if not both of us will reply.  You yourself will be helping others in a similar situation looking for answers.

    Stay strong 

    Al