Hi, my husband has a lump in his neck, he’s had biopsies, all the scans etc and been told that this lump contains cancer cells but is a secondary cancer and they have not found the primary. Now he is booked in for an operation to remove his tonsils, biopsy of his tongue, removal/biopsy of neck lump and removal/biopsy of some glands. I just don’t understand why they couldn’t find the primary? Is this good or bad? He has the op the weekend then they’ve said he will have radiotherapy and chemo after this. I just feel like we don’t really have a diagnosis so not sure where to turn for advice and support.
Hi Shazone and a very warm welcome to the Macmillan Community but sorry to hear about your husband.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Unknown primary cancer support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your husband and yourself you may benefit from joining and posting in our Carers only support group where you will connect with others navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 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/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community.
Hi Shazone
Cancer in a neck lymph node is the classic presentation of HPV positive throat cancer. Your husband's initial biopsy would have revealed he has squamous cell carcinoma which is why his team is targeting the likely primary sources which are tonsils or base of tongue. Often the original cancer is quite small
Come and join us in the Head and Neck Cancer Group
You could start with looking at THIS recent post then start your own thread
We are friendly bunch with lots of help and advice to offer.
HPV positive oropharyngeal cancer has a high rate of cure in excess of 90% so hold onto that
I am almost five years clear of throat cancer radiotherapy and living well
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
