Hellooooo

Hi. Welcome. Not finding the primary on scans is quite common but it usually turns up on biopsy if the throat, either in a palatine or a lingual tonsil. 
We have a forum member, Peter…. PFJTHS who is very active here and it took years for his primary to surface. I’m sure he will be along soon to talk to you. Meanwhile if you click on his name in this post you can read about what he describes hi “convoluted journey. 
Good luck and keep in touch to let us know how things pan out. It’s good you have a medical background. I do too and have found it a huge advantage 

Hi welcome from me. Dani’s covered the not finding primary it’s not unusual as she says often pops up at the biopsy and planning stage. It can also burn its self away before yiu even know you’ve got it.  but chemo radiotherapy gets rid of the blighter. Treatments hard but if I could do it at 61  anyone can. 
hpv  driven tumours do respond extremely well to treatment . Ask any questions in here we’re all happy to help. Just be there for your other half’s prepare for mood swings they happen we don’t mean it but even me little miss positive wasn’t always pleasant to my long suffering hubby. He was and still is stoic and he just let me rant. 

Hazel 

HI Cee2 and welcome from me.  Have a look at my profile for my journey from CUP to eventually the little bugger being fried and poisoned. Not all journeys will be as long or convoluted as mine, but it gives you an idea of treatments and options.  All options are a very personal decision.  I would not do it differently if I had my time again.  I saw a new consultant the other day who did not know me and he agreed that the decisions I made along my journey were the correct ones for me.

Happy to elaborate further if you wish.  Either on this chat or via PM.

Hi Cee2

Just wanted to say a warm welcome to the group.

As both Dani and Hazel have said some patients at this stage have an unknown primary site.

There are people on this forum who were in similar positions and hopefully someone will pop on to answer ypur post.

Having a medical background will be helpful for you both , it’s great you both are feeling positive , as you have said it’s not easy treatment to get through for patients or their loved ones , but it is doable.

I had a pretty tough time but would do it all again to be told ‘ no sign of cancer’ . Over 90% cure rate for HPV related cancers keep hold of that .

Hope Thursday goes well for you both

Debbie

Thankyou all for your supportive responses. My Partner is a trooper, I’m not sure he’s completely accepting of how uncomfortable things may get though I’m giving him small chunks of it the more the convo opens up and the more info we are getting. I think Thursday will be the key and we will have a definite plan for step one. 
We hadn’t got round to moving in together and it was next years plan!!! We live 100 minutes apart and transferring his care currently is not sensible as this will just delay everything. I just want to be there to support him emotionally, practically and I feel slightly frustrated. Fortunately I have been able to be flexible in my work and step back, allowing me to focus on his needs, and I appreciate all the support here too. 

Hugs xx

Small chunks are good easier for some people to take things in x

It sounds like you are prepared and strapped in for the rollercoaster ride that none of us our our families want to take .

Get all the support numbers/ emails from your team your CNS will hopefully be your advocate as was mine plus this wonderful group of people .

Ask any questions you have , there is a wealth of lived experience on this site and always someone here to reply x

Also make a back up plan in case you are ill/ can’t support your partner ( eg free transport to and from apts).

Debbie

Hi and welcome to the forum.

I’m relatively new here as well but I thought I would let you know that I have a fairly similar circumstance as your partner. Swollen lymph nodes, biopsy, HPV+ SCC with the primary initially not being found. Suspicion lay around my right tonsil as it was showing as ‘bulky’ in my CT scan. A biopsy of the tonsil was non-diagnostic and my cancer nurse informed me that it is fairly common for the primary not to be found as the body may have killed it/fought it off. My subsequent PET scan again showed the right tonsil as the primary site and I believe that this is now being treated as such (meeting this Friday). 

I’m likely to be having explorative surgery and then chemo/radiotherapy. 

anyway, welcome to the forum, it’s full of great information and advice and there’s plenty of friendly folk on here to turn to when you need,

Chris 

Hi Chris,

How did your appointment go? 
Hope you have a plan now and things are getting underway.

My partner is having his pre op on Tuesday in prep for removal of his tonsil and some of the tongue, plus a neck dissection.

He is under Professor Winter in Oxford who seems to know his stuff. Doc says 2-5 days in hospital.

id be very interested in this groups experiences post op please? I appreciate everyone is different, but pain, eating & drinking, healing etc would all be useful. 

Also, when did your chemoradio commence following surgery? I know we can ask all these questions next week, but there’s nothing like real people’s experience.

I really appreciate it all, thankyou.

big hugs  

Hi Cee2

I’m actually not long home. I went in yesterday and had a panendoscopy (scope down throat), right tonsillectomy and a tongue base mucosectomy using TORS. 

I stayed in hospital overnight and was released today. There’s discomfort when eating but i can get food down and plenty of water. The nursing team advised to get eating as soon as possible as it aids recovery. Right now im only on liquid ibuprofen, codeine/cocodamol and I’ve been given a Difflam spray that I haven’t used yet. I’ve been advised from two different consultants and medical staff that the pain will increase over the coming few days so I’m expecting that. 

So far, they haven’t found the primary site but have suspicion on the right tonsil. That and the tongue base has been sent to pathology and I’ll have a follow up meeting a week on Friday. We’ll work out the plan going forward from there. My surgeon advised that I would be a good candidate form a PATHOS trial and I’ve been given paperwork to look at for this. I believe it’s lesser radiation, I’ve yet to read about it. I will definitely need radiotherapy regardless but would anticipate that that won’t start for at least another 4 week or so by the time the tonsillectomy heals and I get my mask fitted and the dental visit/possible extractions. 

Hope this makes sense. I’ll do another post on my original post with a tad more details around my experience 

best of luck

Chris

Chris, thankyou so much for this useful information. I’m so pleased to hear you’ve had your surgery, I’m wishing you as comfortable a recovery as possible. It’s encouraging they’ve given you plenty of pain relief, as that’s very important and will have a knock on affect no doubt, if not managed appropriately. It sounds like your team are looking after you. 

I will look into that trial, though it may not be available here as I did ask about them.

Be kind to yourself, and thanks for the update. Stay comfy