Hello Tuffcookie, 

I'm sure that many of our members here will be able to identify with the feeling of being adrift with "unknowns". I wondered if it might be particularly helpful for you to try and get in touch with one of our other members Vatch who has had head and neck cancer with an unknown primary. You can find his most recent thread here and I'm sure if you drop him a line he'll reply to you. 

Sending you our best wishes. 

Jenn
Cancer Chat moderator

Hi tuffcookie - I've just picked up on your post and I think I am possibly a good person to answer this, as I shared a very similar situation! I have basically lived with an unknown primary situation for over 5 years now. But mine is a good story which is hopefully near to a happy ending, and I know when I was going through my journey it was always nice to hear the good stories (and there are plenty of them).

I see you are having your neck dissection today - very best of luck with it, I hope everything goes to plan for you as it did for me, the specialist surgeons are brilliant at this kind of thing so I'm sure you will be fine. I was only 33 when I was diagnosed and had mine done and was actually back playing Sunday football about 3 months later! Maybe not a normal situation but hopefully demonstrates that its a surgery you can recover from quickly. It does feel weird, like a tugging sensation when you move your neck, but it lessens over time as does the scar.

My cancer was slightly different to yours as it wasn't SCC but something called Mucoepidermoid Carcinoma (MEC) which is a salivary gland cancer. They found it in a big lump in my neck, but couldn't track down the primary from a range of scans including CT, MRI, Ultrasound and PET. Like you they suspected tonsil or base of tongue as these are popular spots for a primary to hide from scans (or maybe sinuses) - however along with my neck dissection they removed a tonsil on the same side as the lump and took a piece of my tongue and found nothing (nor in the 30+ lymph nodes they removed).

So here I am now and we still haven't found it! My original lump turned up 5 years ago in September but the primary is still technically unknown. Its a bit of a mental test as much as anything this 'unknown business' and I think that was the challenge for me. At first I wanted to find it and attack it - but then as time went on I found myself very much wanting it to not turn up at all. Its an unusual situation and a bit of a waiting game but you have to just get on with life and try to forget about it.

I think at some point I just decided that I'm all good until the point someone told me otherwise. I tried to stay vigilant and regularly check my neck and mouth myself for anything worrying. My official check ups have moved from 3 monthly scans and follow ups to annual scans and 6 monthly check ups.

There seem to be a couple of theories on how an unknown primary never being found happens - firstly that a piece of tissue detatches itself from the primary site and ends up in your neck (so in essence the lump they removed from my neck was in fact the primary) or that your immune system finds and kills the cancer in the primary site but not before it has released some cells which ended up trapped in the lymph nodes. I do think my case is fairly unusual and I also know people on here who have found their primary after a period of time. But I would suggest that as primary tumour size is part of prognosis, then it being so small that the fantastic scans we have now can't find it can only be a positive sign.

So I have one last MRI scan on the 24th of this month and if that is clear then I am technically cured and signed off in March, not there yet but everyone seems very confident that I will be fine. Best of luck with your dissection and let us know how you are afterwards when you can!

Keep us posted with your progress, and stay in touch. These forums are great for practical and emotional support.

All the best

Leo

Hi there tuff

welcome to the forum

the lack of a primary, even though we are diagnosed with secondaries, is not uncommon

i myself and just over two years out of treatment for throat cancer and went through a tonsillectomy (even though I had them out at 8) a pet ct scan and an exploritory all the way down to my stomach .... the primary has never appeared

i work on the basis that by body is so super humanly sensitive to a cancer cell that at the slightest microbe, it dumped it out into a neck lymph gland and the rest is history.

i never had the neck dissection but went through my treatment with a few who had and even at treatment stage I would never had guessed the a few weeks previous that had had this.

are you having chemo and radio then?

shout if there is anything you want to know .... we are all here to help

vatch

Hi Vatch

Nice to meet you on here.

I've seen a few people mention how helpful you have been to them on the unknown primary side of things - nice work! Its certainly an exclusive club we don't just let anyone in...:-)

I've got exactly the same take on my unknown primary! Thats the version I believe.

I was a lot more active a few years back - not sure if you've come across it but there was an old thread that lasted for years called 'branchial cyst' which a few of us posted on many times when we were going through the most active phases of our journeys around 2012-2014. There were a few of us who had unknown primaries on there, and what drew many to the thread title was that our neck lumps had at first been thought to be cysts (until the dreaded call to go in early for our lab results!). I think that without a primary being obvious that can be a common misdiagnosis based on scans.

Its great to see that there are still so many fantastic people like yourself on here, providing help and support to those who are going through cancer. An amazing guy called 'access' (Colin) helped me so much as did others - to find and talk to people who are going through similar things means a lot.

Cheers

Leo