Diagnosed today with HPV tonsil cancer

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Hi all

I am 42 year old female. I was diagnosed with HPV tonsil cancer today and I am absolutely terrified, mainly for my children.

I was referred to ENT by my GP in Jan 26 after I noticed that I had a lump on my tonsil. I had been to the GP in September and was told that my tonsils looked normal. ENT stated that my tonsils (grade 2) looked similar size, and reassured me but he referred me for an MRI anyway with contrast. MRI showed asymmetry and a cystic area. No lymph nodes of concern in neck. I was advised to have a tonsillectomy which I had two weeks ago.

Today I was told that I will need a chest CT and dental X-rays. I was told that I will need chemoradiadtion but from the booklet i was given this is for locally advanced cancers? and I’m pretty concerned, after being told I need a chest CT. I’m not sure if this is usually what is done? I asked if they needed to do any other scans on my neck, or biopsies and don’t. Could do with connecting with others

Nickr 1 hour ago

You will have xrays to see if you require tooth removal. This is if you require radiotherapy

Teeth get damaged

Having no damage to lymph node is a bonus

CT scan will help to give a more accurate indication

You may also have a pet scan but probably not as none showing in your nodes

Any reassurance you need ask your team to explain for you.

Stay positive

I'm on the journey too

T4 N1 M0 HPV +

Left side toncil back of tongue , left side node

I have cancer

Cancer does not have me !

Woodz 1 hour ago

hi Ray

sorry you find yourself here. The most common treatment route seems to be RT, sometimes with surgery, I guess depending on exact size, location of the tumor. It is very effective, particularly for HPV driven cancer

the chest scans are also normal - they are being thorough and making sure they know what they’re dealing with. I suspect everyone here had one ( or more!)

Woodz

Rayray41 1 hour ago in reply to Woodz

Hi thank you for your reply. I thought just radiotherapy was treatment for tonsil cancer? Is chemoradiadtion for more advanced cancers

Nickr 1 hour ago in reply to Rayray41

Im having 6 chemo

30 radiotherapy

My cancer is

1.back of tongue

2.left side toncil

3 left side nodes

Chemo at full bored on left

Lower power on right as a precaution

Both are normally given depending on the stage of cancer

Stay strong

You've got this

T4 N1 M0 HPV +

Left side toncil back of tongue , left side node

I have cancer

Cancer does not have me !

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