I've just been diagnosed with secondary cancer in a neck node but they can't find the primary source. I've had CT, MRI and a PET scan but they still can't find it. The Drs think its in the throat and I am booked in for exploratory surgery the week after next for them to take biopsies. The plan is that if they can't find the primary site that I will more broad targeted radiotherapy on my throat. I'm very worried about this approach and how severe the post period and recovery will be. Anyone who has had the same treatment that can give me any advice would be appreciated.
Hi Jeremy and a very warm welcome to the Macmillan Community but so sorry to hear about your ongoing diagnosis.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..
…….. support groups….
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with a group please click on the link(s) above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Hi Jeremy,
I'm Dani and I hang out in the Head and Neck group that Mike has signposted you to. I had six weeks RT for throat cancer and I am seven years clear now. Unknown primary throat cancer is not common as mostly the surgeons do find it, but sometimes they don't. RT is not always the immediate answer because of the lifelong problems it does cause.
We have one particular member who went on "watch and wait" rather than have RT straightaway. Click on his name here to read his story PFJTHS
Unknown primary cancer in the throat is not the same as Cancer of Unknown Primary which is a whole different ball game and not applicable in the Oropharyngeal scenario. Have faith...it is an eminently curable condition.
Come and say hello. There are lots of us there to help you through
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
