I was diagnosed with p16+ lump on the 4th August off of an ultra sound and 4 core biopsies and since then i have had ct scan a pet scan and now a consultation with an oncology team
4 different specialists have now looked with the nose camera and can't find anything
The pet scan hasn't found anything
Ct scan hasn't found anything
So the treatment plan of TORS removal of the tonsils and base of tongue and in the same operation a full dissection of the left side neck ( and all its risks and after effects) were turned down
My official diagnosis letter when sending me back to whence I came ( the consultants words when I told him I didn't want to play guinea pig) gives me the following diagnosis
TXN1 P16 positive SCC of left neck
I am/have already paid privately so seek a 2nd opinion, who also might add a) agree the treatment plan was somewhat excessive b) there are always options and I should have been offered one not just denied treatment in an obvious effort to frighten me into agreeing
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
Feeling grateful yet angry that is only because I have the funds and insurance to pay for this option I might get offered a better treatment plan instead of just being another number and default hack and tick box 'survivor' cash pot for the NHS
Hi. Sorry you have been given such conflicting advice.
I hope you get an answer somewhere.
TXN1 P16 positive SCC of left neck
You obviously know what this designation means so I won’t dwell on it.
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.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
