My husband has recently been diagnosed with cancer in the neck, potentially in lymph nodes, primary unknown. He is very early weeks of diagnosis, has had MRI, CT, biopsies and just had a Panendoscopy and more biopsies. We await his appt next week following MDT discussion for results and treatment plan. I have read some of the stories on here and they are helpful thank you. Once treatment plan is decided upon we may have a clearer picture of where his journey will take us. One thing that does surprise me is that they cannot always find the primary cause. I had 6weeks radiotherapy last year so in some ways will be able to support him. I found the community support on Macmillan heloful at that time.
Hi Jax and welcome. Yes sometimes the primary evades detection. It could already have been dealt with by the body or it could be too small to find in a biopsy sample or a scan.
Some people end up having radiotherapy in a likely area or remain on watch and wait.
Peter here is on watch and wait. I’m sure he’ll be along soon with his story but meanwhile you could click on his name here and look at his profile. There’s a synopsis of what he’s been through.
PFJTHS
Stick around. There’s lots of help and support here
Oh and by the way I hope you’ve made a good recovery
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Jax welcome from me as well. When you’ve got hubbys plan let us know we are here to help each other.. Oral cancers can present with unknown primary’s it’s not common but can happen as Dani says.
Hope you are ok now after your radiotherapy I know if at least 2 other couples one who went through treatment together and one was the year after her husband Both with different cancers.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Jax and welcome from me. Sorry I've been away on the boat for almost a week and using my phone to look at the site - so missed yours and many other posts!!
As Dani says my first 18 months or so was similar to what you are describing for your husband - at least the early stages.
You are right, once you have the treatment plan things will be a bit easier - at least you both know where you are going.
Although not much discussed on here but apparently a H&N CUP is not uncommon, but not frequent. My primary (maybe it is, maybe it is not!!) was eventually found after 18 months and when they opened up my tongue as part of a panendoscopy biopsy apparently it was the size of a grain or rice. Hence never showing on the scans. By the time I went in for a partial glossectomy the tumour had disappeared once again. Having said the "primary" was tiny the initial presentation was a very large lymph node with secondary HPV+ cancer in it.
I only had surgery, no RT.
Fast forward to now, and it is 2 2/3 years since I first found the lump, and I am living life to the fullest. Every chance your husband will be doing that as well.
In the event nothing shows for the primary there is a CUP forum on here, but it is little used. Probably best to ask on this forum as there are one or two active people with CUP experience.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007