Diagnosed today with HPV tonsil cancer

thank you. I really appreciate your reply.

I got my MRI report back yesterday. It said that there was No nasopharyngeal mass, no focal major salivary gland
lesion.

 MRI confirmed  asymmetric enlargement of the left palatine tonsil, that appeared inhomogeneous following contrast administration and there was a 15 mm focus of
restriction in diffusion evident within the left palatine tonsil. Radiographer recommended, biopsy or excision (I've had tonsillectomy).  He mentioned that there is mild lingual tonsillar enlargement. Do you think this is clinically significant? Does that mean spread? 

The piriform fossae were patent, no laryngeal or thyroid mass, no enlarged or concerning cervical nodes. 

Rayray41 said:

 MRI confirmed  asymmetric enlargement of the left palatine tonsil, that appeared inhomogeneous following contrast administration and there was a 15 mm focus of
restriction in diffusion evident within the left palatine tonsil.

This is indicative of malignancy but your surgeon has dealt with that by removing your tonsils 

Rayray41 said:

 He mentioned that there is mild lingual tonsillar enlargement. Do you think this is clinically significant? Does that mean spread? 

It might well be spread  We have tonsils at the back of our tongue as well as in the throat  it’s where my cancer was

It will likely mean you have to have radiotherapy but it’s something to discuss with your team 

Rayray41 said:

The piriform fossae were patent, no laryngeal or thyroid mass, no enlarged or concerning cervical nodes. 

That’s good. Nothing there. 

PS

Rayray41 said:

locally advanced cancers

This means that the cancer has moved out of the tiny area it started out in. It’s not anything to worry about. Even lymph node spread is called locally advanced and most of us have that. It’s distant spread that is crucial. 
RT and CRT are gold standard treatment for our very curable cancer 

I’m really scared about distant spread. I feel like I need to take more breaths when I talk, I’m  absolutely petrified as I have children 

Hi like Dani says local spread us where they expect tonsil cancer ti go I had 7 lymph nodes which were all classed as local spread it was the lymph nodes doing what they do. I also had local spread to soft palate and anterior wall of tonsil. Chemo radiotherapy will deal with it all you may not even need  chemo. 
remember keep off Dr Google it’s your enemy at this point in treatment. 
hugs Hazel 

Hello Ray .This is all very frightening im 54 which I thought was young and also worried  for my children I was diagnosed  on Jan 17th I had a biopsy ct sc mri and pet scan and those first few weeks were awful .But as time has gone on and with the support  of the health care professionals and this group it is all becoming alot clearer and more positive.I Worry about everything. All my prep work was completed  last Thursday .I've had two teeth out by the hospital  orthodontist all organised  through them which I was totally petrified of  ,but they did it all no pain whatsoever the worst bit was not having a cup of tea for 24hours. I was also advised  to have a peg fitted to assist  with feeding if at some point I couldn't  manage to swallow. Nutrition is so important to recovery. The procedure was very quick and painless. I did have a overnight stay in hospital  just be monitored. I've had a little  pain in my tummy but that's been managed  by simple paracetamol and today day 6 seems so much better. Once you get to your first treatment date you will feel so much better mine was yesterday. We will get through this and as the youngsters say we will smash it .Good luck .Adam aka perry

Rayray41 said:

I’m really scared about distant spread. I feel like I need to take more breaths when I talk, I’m  absolutely petrified as I have children 

Of course you are and that’s normal, but the odds are massively against distant spread. How old are your children? How much have you told them and how is your partner doing in the middle of all this? 

Keep off Google  100%.I made that mistake  the first couple of days.

My kids are 11 & 14, youngest is v sensitive. Not much, just the basic info in a child centred way. My husband is not particularly supportive and we were actually looking at splitting before the diagnosis. My sister was diagnosed with breast cancer in October, there’s 11 months between us and my friend is terminally ill after a recurrence of sarcoma. I feel like my nervous system is in overload and I can’t help thinking I should have done something before I did. Basically I first spotted the lump on the tonsil in around august, went to the doctors and they weren’t concerned, then got a neck ultrasound privately again no concerns were raised. I loosely  kept and eye on my tonsil by taking photos and noticed that it was getting slightly bigger although it was hard to tell. When I went to the doctors again in late December she wasn’t concerned but referee me anyway. ENT carried out exam camera down throat again reassured me but sent for MRI just in case. I feel like my chest wall is sore, muscles in back feel sore  and am constantly watching my breathing 

I think you will be surprised at how resilient your children are through this.  I am sorry about the strain between your husband and you.  Clearly it predates the diagnosis, but just to say some people just cannot process the thought of cancer in a close friend/partner/relative.  You will find out who your true friends are through this process.

Sounds like you did everything possible to be on top of this prior to diagnosis.  There are so many things it could have been other than cancer.  The vast majority of people sent to ENT do not have cancer so they have to be somewhat careful that a correct diagnosis is delivered.  Don't beat yourself up about it.  They will do what is needed to cure you.  I chased mine for 4 years before I thought it was worth CRT so delays more often than not do not bring spread.

As you have seen, we have your back in this forum.  Hugs.