Hello there,

I don't have answers for you, but I am having all the same symptoms you are. Maybe we can offer each other support. I am only 27 so they said they said no need to worry as it's rare. I'm having an ultrasound on my neck just waiting on the letter. I have 3 kids I'm going out of my mind with worry right now.

i really hope all goes well for you.

So young, hopefully that will be good for you.  I have 3 children,  I've not said anything to any of them, hopefully I'll have nothing to tell them.  They are between the ages of 17 and 21 though, the eldest only 6 years younger than you.

9 out of 10 people tested don't have cancer, but its hard not to worry though isn't it.  

Have you had any tests yet?

What I do each day is find things to occupy my mind so I am not thinking about it so much.  Its the not knowing isn't it.

Keep me posted with your journey,  fingers crossed for you.  Feel free to vent here anytime  

New Years Eve 2020

So I am sat in my car on top of a mountain admiring the snow capped peaks of the Brecon Beacons, wondering what 2021 will bring and the mountain God's did answer...

Phone rings... Which is unusual on top of the mountain.  Its head of ENT confirming tonsil cancer,  very apologetic its over the phone.   To be honest I didn't mind, I couldn't have been in a better place to receive the news.  Tells me they still want me to go for my neck ultrasound and MRI on Tuesday 5th January.

Hour later receive another call from the hospital booking me in for a biopsy ar 7:30am on 7th January,  no food or drink from the midnight before.  Fortunately I will be asleep for most of the nil by mouth.

I also have to go in on Monday 4th January for a covid test and at some point between the covid test and the biopsy I have to go in for a pre assessment.

So my first week of 2021 is going to be busy, but you know I'm good with that.  At least I now know the enemy and I can start my fight.   I am a one in ten, bring it on!

Hi DragonFach.

There are a number of head & neck cancer charities.  You might already know of them, but I'll list them just in case others join this party later:  Head and Neck Cancer Foundation ;  Head And Neck Cancer UK (HANCUK) ; Get Ahead ; Northern Head and Neck Cancer Charity ; Oracle Cancer Trust

There is also a throat cancer charity (which I guess might be appropriate for tonsil cancer): Throat Cancer Foundation

I don't know much about any of them, but maybe they might be a good place to start.  If you find one that's particularly helpful, then please come back and tell us about it.

Wow, thank you so much for the links

I will look into them all and be sure to report back.

Hi,

I hope you don't mind me posting. Firstly I am so sorry about your recent diagnosis, but I envy how positive you are. You really are a strong individual and it's great to see.

I am a 25 year old women who has a 5 month old baby. I am here maybe just to understand what tests you did to diagnose cancer? And maybe to compare symptoms. I don't know, just really don't know what else to do.

around 3 months ago I had white on my tonsils, sore throat, run down, very tired and a sensation that something was stuck in my throat. The pain has not let off since. I've recently in the past 4 weeks been suffering with severe ear pain on the same side I have the throat pain and my arteries in my neck are raised as well as numerous nodes! 
 

ive had an ultrasound scan which was clear, an ent appointment which didn't detect cancer (just by looking) but didn't tell me what could be wrong. So I went for a second private opinion with a camera and he confirmed it could be a tonsil stone or reflux, wouldn't be too sure unless they took my tonsils out and the potential stone, but might not be the problem. I was referred for a ct scan of the chest, abdomen and the pelvis. They wouldn't send me for a scan of the kneck? Bizzare. So my ct results were nothing sinister but many nodes all over my body raised, want me to be sent to a haematologist to just be sure. (I saw a haematologist 2 months ago and confirmed they don't think it's blood cancer). So now I'm back to square one with the pain increasing. I do feel like people think I'm mad at the gp!

so I'm now in a position where the pain is constant, I can't go to the gym like I normally would as the pain is draining. I have on and off white on my tonsil (right one) every week and no infection in ear that's noticeable by a gp, just a throbbing pain that radiates down my neck with something that feels stuck when eating food. 
 

I am torn between a mri of the kneck (private) or to get my tonsil out (private) and get them sent off for a biopsy. I really don't know what to do. Gp don't know what to do, ask for advice they can't say. I don't care about money right now. I want my health to be ok or to understand what I'm dealing with! It's the not knowing.
 

im losing my mind and want to get my life back on track but I don't know what's wrong with me and I am terrified it's cancer.

best wishes 

Mara 

Hi Mara

Firstly, of course I don't mind you posting on my thread.  Being so young and a Mum of 5 month old is understandably going to make health scares so much more scary.  And from experience not having a diagnosis is much harder to deal with. 

Keep in mind that 9 out of 10 people with symptoms and all the test come back being cancer free.  Neck Cancer is rare, sadly for me I do rare really well haha.

Reading others stories I was quite shocked how quick they diagnosed my cancer.  I thought it was going to be like this and take a few months:

Dr - ENT - CT Scan - Ultrasound - MRI - Fine needle biopsy - Diagnoses.

It actually went like this and took just weeks:

Dr - ENT - Ct Scan - Diagnosis. 

I was already booked for an MRI and ultrasound,  which they still want me to have on Tuesday.   I am also booked for a full neck biopsy  on Thursday,  after that they will know which cancer it is. 

From my experience, if they suspect cancer they don't mess about.

Not knowing what is wrong can cause anxiety and stress, which in itself can make you poorly.   For this reason alone, but only if you can afford it, I would go private.   There are many routes you can take, so speak to your doctor first  who will advise you on your best course of private care.  Your doctor should also have a list of recommended private consultants. 

I went private a few years ago when it was thought I had MS.  It was an 8 month wait on the NHS to see a neurologist.  I think it cost £375 to see him and a further £600 if I wanted an MRI.  Fortunately, after the first consultation, the neurologist agreed to see me on the NHS so ended up not having to pay for MRI or any further treatment.  I was diagnosed with a rare brain disorder which presents the same as MS.  Like I said I do rare well.

My advice to you is try not to worry and stress (I know its easier said than done),  more often than not the truth is less painful than the cruel thoughts of our brain. Stay off of Dr Goggle.  Do push for a diagnosis,  remember a noisy cog is the one that gets oiled.  Do lots of things that make you happy, your body produces its own happy drug which will help you feel better.  More than anything enjoy your 5 month old, its a great age and they grow up so quickly.   I have 3 daughters 17, 20 and 21 yrs and it seems just a blink of an eye since they were babies.

Good luck with everything,  stay strong and happy.  Keep me posted.

Monday 4th January 2020

So today is the day of my covid test, yay (that was a sarcastic yay).  Test is a drive through at 9:30am and a 30 mile round trip.  A trip i have to do another 3 times this week, booooo. (That wasn't a sarcastic booooo).

Goodness knows how we are going to afford these journeys.   I am on basic PIP (disability payment) which barely covers the house hold bills as it is.  In fact it doesn't, already in energy debt, which we've embarrassingly had to apply for a grant for.

Be aware how quick your life can change people.  3 years ago I owned 2 businesses, which after 7 years of 16hr days, were just on the brink of success (life was good) when I was struck with a brain disorder (much like MS). Now I am having to go cap in hand to keep the heating on.  Don't get me wrong,  life is still good, different,  but good. I  have so much to be thankful for.  In fact the difficulties of the last 3 years have prepared me well for now and what is to come.  In many respects I'm in a better place to face and fight this new foe. 

Right, better get dressed I have a covid test to attend.

Hi

I do not mind in the least.

Obviously I am not medically trained in any way and can only empathise.  I  so know the worry and anxiety you are going through.

Most importantly at this stage is to keep in mind that 9 out of 10 people who present with symptoms and are tested come back negative for cancer.  Head and neck Cancer is rare, even by cancer terms.  

You are doing absolutely the right thing by seeing your GP, do not be afraid of telling them your concerns.  I wish I had pushed more back in May 2020.  Ask to be referred to ENT.  Before your doctors appointment write down any questions before hand and make sure you get answers.  Something else l wish I had done.

Stay away from Dr Google.  It will only compound your worries and anxiety.   Do anything you can that makes you happy from funny cat videos to reruns of the Vicar of Dibly, of course you may not actually like these but you get the idea.  Anything that makes you happy including petting animals causes your body to produce endorphins,  the bodies natural happy drug.  These endorphins will help ease your worries and anxiety.   Also they will take your mind off things.

Even writing your post would have given your anxiety a few minutes break.

I hope this helps, even if its just a little bit.

Good luck with the docs.  Let me know how you get on.