refused treatment plan and seeking 2nd opinion

Hi. Sorry you have been given such conflicting advice. 
I hope you get an answer somewhere. 

mand67b576ad said:

TXN1 P16 positive SCC of left neck 

You obviously know what this designation means so I won’t dwell on it. 

mand67b576ad said:

I am now waiting to have new core biopsies and more detailed genetic testing on the lump in my neck to ensure it actually is a metastatic site and definitely not the primary, and we will go from there 

Has your second opinion given you the reasoning behind this? I ask because squamous cells are not part of the normal architecture of lymph nodes so they have come from somewhere else. Ie they are metastatic. P16 is a surrogate marker for HPV but it’s not infallible. The only way to tell is to look for HPV DNA. 
We have a few forum members who were diagnosed with unknown primary. Have a look at Peter’s profile by clicking on his name PFJTHS 

He had a neck dissection after surgery revealed no obvious primary cancer in his throat. He was on watch and wait for four years before the primary emerged. 

mand67b576ad said:

The pet scan hasn't found anything 

Ct scan hasn't found anything 

I’ll add that some cancers are too small to be visible on scans and sometimes even the body has dealt with it and it’s gone but not before seeding a lymph node. 

I think he wants his own results on biopsy before he makes too many concrete decisions /statements. Especially as I have a history of medical flukes ( i was diagnosed with acromegaly in 2018 off the back of infallible blood tests which showed I had a 1 in 5 million pituitary gland tumour in the brain . Which I never had ) so as you can imagine I, and now he, wants everything triple checked before any decisions are made 

mand67b576ad said:

i was diagnosed with acromegaly in 2018 off the back of infallible blood tests which showed I had a 1 in 5 million pituitary gland tumour in the brain . Which I never had

Crikey...poor you. maybe some doctors aren't aware that you can get growth hormone secretion outside the pituitary

Fingers crossed. With your history of misdiagnosis I'm not surprised you are seeking another opinion. 

Best of luck. If you feel up to it maybe you can update us when you know more

Hi

sorry you’re in this situation and it must be difficult if you’ve previously experienced mis-diagnosed. 

I was in the same position- SCC found in a lymph node but no tumour visible with CT, MRI or PET scan. I had exactly that procedure and the tumour was found in my tonsil - too small to be detected. 

I think if there are cells in a lymph node they know there is a primary somewhere but it could be too small to detect  

Hi yes, im totally aware it could be so tiny but I can't get my head round the fact they just want to remove everything everywhere to not only find it, and the risks and after effects that can bring. 

For example, until they find the primary surgically in the throat they have no idea if you will need radiotherapy. If you are then going to need 30 + radiotherapy treatments anyway,  again with its own pitfalls and terrible side effects, why do the dissection? Surely you are subjecting the patient to 2 varied and drastic harmful procedures when the radiotherapy will be enough. 

Only that if the throat surgery gets good margins and its deemed no radiotherapy for the primary is necessary the patient could then say I want the surgery option to remove the lymph nodes now and it would cost the nhs 2 ops instead of 1. 

I have actually asked for my tonsils to be removed next, privately, im paying. And biopsy the tissue. 

By taking baby steps, and each step more info and options for the next step unfold, seems you only get that luxury when you have the money to pay for it. 

Hi - my consultant had several conversations with me about these various options. I was given a choice of radiotherapy or surgery with the caveat that I might have to have both.

some people on this forum have had the neck dissection and TORS as separate surgeries. I was relieved to get it all over and done with in one go. But that’s me and everyone feels differently.

I would push your consultant and ask these questions to help you make a decision. 

I was told I did not need RT but I get anxiety that I didn’t have it. I have piece of mind that it wasn’t found in my tongue base or other tonsil. Again this is quite personal and we all respond differently to stress and uncertainty. 

It’s really reasonable to have all these questions and I found it difficult having to make decisions so quickly 

good luck