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

just an update as in the future people read threads and they just end so I'll keep adding to mine when things happen. 
I sought the second opinion from a brilliant head and neck oncologist who is one of the leading head and neck cancer and thyroid specialists. 
He has redone the biopsies and although exactly the same p16+ SCC metastatic section 2 lymph node of the neck he has immediately booked me for a tonsillectomy ( no tongue cutting no neck dissection) within 1 week. 
He is convinced the primary is in my left tonsil. 
He has told me it can be literally a couple of mm's.
He has suggested pending the results of the histology of the tonsil tissue, he will be referring me to the team at Addenbrookes ( I am seeing him privately atm) and will discuss my case with the team there and the previous experiences I have had with the first oncology team I was sent to, and he suggests he will be putting me down for a 6 week course of radiotherapy, this obviously will be more targeted if the primary is found in the tonsil, but still the same suggested course of treatment if not, only more wide spread radiation which obviously he hopes to avoid. 

He asked if its not found in the tonsil , did i want to attempt to find it by having some of the tongue cut away to allow for a more targeted approach, I declined and he said that's fine, at least you will be entering radiotherapy with as little damage/post surgical tissue this way. 
I asked about the cancer in the lymph node and why did he not feel it needed to be removed with the dissection when that had been the only option offered before? and he said it will be treated and shrink with the radiotherapy so therefore the surgery would just be more trauma when the radiotherapy will most probably achieve the same result. 
I understand I am electing to have the minimum rather than throw everything at it. but for me I rather take the risk of doing as little as he can advise, and take the risk of it coming back, than be left with and have to endure the extent of treatment that would serious impact my life during and after treatment and possibly get no better result, as he so rightly stated, people who have everything TORS dissection radiotherapy and chemo still have a chance of getting the same cancer back or other cancers actually caused by the treatments to get rid of this one

I'm happy, well Im not happy obviously, but I'm getting the treatment plan Im happiest with doing and coping with. 
My tonsils are coming out Thursday and I'll find out if there's anything living in there within a couple of weeks. 
Then a couple of weeks healing and then I'll be off to meet the oncology team and discuss the next stage. I know this isn't going to be over ( well its never over but) til probably mid Feb by the time everything is sorted and I do 6 weeks etc but at last almost a year since I first found the lump in my neck something is finally happening to make it all go away.

P>S in as far as the mask wearing is concerned I have started practising by laying on the bed and putting a heavy towel over my face LOL so far i can manage about 90 secs ... but I'm trying

Hi I had tonsil biopsy my primary was in the  tonsil crypt  I had 7 lymph nodes and had 35 radiotherapy sessions and 2 of planned 3 which is the gold standard for HPV driven tumours with lymph node involvement. Sorry yours has been convoluted up to now. I had no neck dissection at Leeds cancer centre they rarely offer neck dissections. Different trusts have different options. 
re the towel swop to a light one even a tea towel and put 3 tracks of music in and set timer to 12 mins you’ll nit be far off in timings for most days. On odd days I had longer when they were scanning as well. 

best wishes Hazel 

It definitely seems a plan. Good idea to keep adding here too 

mand67b576ad said:

in as far as the mask wearing is concerned I have started practising by laying on the bed and putting a heavy towel over my face LOL so far i can manage about 90 secs ... but I'm trying

Ask to have eyeholes cut and it won’t be anywhere near as daunting.