Two weeks on

Hi Julie

I was diagnosed with HPV16 plus Tonsil cancer in 2023...I was told by the oncology team at my initial appointment that it was almost certainly cancer, biopsies taken proved them right, 90% of referrals are non cancerous... waiting is tough... hopefully you will be in the cancer free group 

Peter 

I am sorry to hear about your tonsil cancer, how are you doing and thank you for replying.

Things are taking a lot longer. I was diagnosed in 2018. My urgent referral to hospital went astray and phoning after a month I had been told that it had been downgraded to routine. I kicked up a huge fuss and was seen 2 weeks later. My MRI appointment went astray too and I had to chase that up. Biopsy reported in October and RT started in December four months after I presented myself to my GP. 
All you can do is keep busy and chase up when you can. 
Your MRI results should be available to your consultant within a week then all your results will have to be discussed at the weekly MDT so depending on when the specialists meet you should get an appointment discuss treatment after they do. 
Good luck xx

Julie 123 said:

Received a letter from the hospital saying it was a definite possibility of being malignant, they are just putting the fear of god into me

Is this a letter from your consultant or a letter between departments appearing on your health portal? 

This was a letter that was posted to me. I don’t have access to any portals.

Julie 123 said:

This was a letter that was posted to me

Heavens, that’s ridiculous. I can imagine how stressed you are getting only a small part if the story. 

Everyone is telling me that, it should not have been worded like that but being honest I did the consultant I told him I had health anxiety, he just laughed and said he wouldn’t hurt me, he clearly didn’t understand at all what health anxiety is. Nice to meet you by the way X

Julie 123 said:

he clearly didn’t understand at all what health anxiety is.

My daughter suffers too. Sometimes she’s on the phone to me twice a day. She has spent a fortune ( or rather the bank of mum has) on therapy. So I sympathise 

The trouble is that consultants facing disease and cancer every day have to protect themselves somehow and some don’t know how to do it without upsetting their patients. 
It’s a fine line. 
BUT this is where all of us here excel. We have your back just as many had mine nearly six years ago. Stay with us. 
Hugs 

Hi Julie 

Doing fine.... posting this from Tenerife .... treatment was challenging and recovery takes time.... but we rise to the challenge..... keep the forum updated with your progress 

Take care 

Peter 

Hi I’m 6 years post chemo radiotherapy for tonsil cancer. Am sorry you’ve had a letter that’s not explicit and you’ve every right to be anxious. 

if it helps try to remember head and neck cancers especially tonsil cancer if hpv positive which the vast majority are caused by the hpv  virus have an excellent cure rate. 
Please stick with us we will help you through. As Dani says there’s a protocol that’s followed after mri and depending when your team meets for mdt your appointment should follow quickly. 

Treatments hard but if I can do it I was 61 anyone can. 
hugs

Hazel