My husband has been recently diagnosed with cancer on his tongue. He's had a tonsillectomy. He's just had 4 out of 6 teeth removed in preparation for radiotherapy starting next month.
He's having a feeding tube put in on Monday.
All very scary and happening so quickly.
Thought I'd say hello. My husband is 49, im 40 and we have two young girls ages 7 and 5.
Hi Kelly. Welcome to,our small community group sorry you be found yourself on here and your husbands diagnosis p. I’m almost 4 years since my diagnosis of HPV 16 tonsil cancer with several affected lymph nodes,I was 61 when diagnosed. Treatments nit easy but if I can do it anyone can. We are a small friendly lot ask any questions one of us will always try to help.
This part is the worst part the fear of the unknown
My blogs below might help yiu there’s links to,others there as well.
Hazel
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
Hello Kelly, scary times I'm sure, but you'll get huge support from your team and there are loads of people on here who will listen/advise/empathise whenever you need us. H&N is very treatable nowadays, far and away the majority of people we get on here make a full recovery, but it's tough and it does take time.
He's on the young side to get diagnosed with it (which is very much in his favour when it comes to coping with the treatment); I think most of us on here are a little older....apologies if I'm defaming any who aren't.
From your user name I assume you're in Bristol? My part of the world, although I'm closer to Exeter now, and you have great hospitals there; my dad was in the BRI for a long time and one of my kids was born in Southmead, where are the cancer services in the city?
Must be very difficult for your girls to comprehend, our youngest was seventeen when I was first diagnosed so a bit different, but I kept his college informed of what was happening so they were aware to keep an eye on him, possibly worth doing the same with their school if you think it's appropriate.
Very best wishes and please ask anything, it's an oft quoted line on here but there really is no such thing as a stupid question.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hello Kelly. I will shortly be making my decision about surgery or radio. As far as the tube is concerned I had mine fitted last November after the first surgery and I still have to use it everyday. Just to let your husband know that after a few days it becomes second nature to use it. At least it did with me. I am lucky enough to have a superb Dietetic team supporting me at the hospital which helps. Over time you get so used to not eating via your mouth.
Hoping all goes well for him on Monday.
Best wishes.
Hi Mike. Thanks for the kind words.
Yes, scary times but the BRI dental team, head nose and throat team, Macmillan nurses and nutritionists have all been great so far. Just a lot to take in in such a short space of time..
His ego is dented by the tube and teeth extraction but we are okay. The dental pain isn't as bad as the tonsillectomy so that's something.
Thw radiotherapy scares me more than anything. I hate to see him in pain and, by the sounds of it, the end plus the few weeks following gets pretty nasty.
Im hoping his age (I've never heard so many people call him young!) is works to his benefit.
Thanks again x
The radio really is the brutal bit, when I was told RT (with a bit of chemo) I thought I'd got off lightly, because chemo is the thing that people associate with the sacry part of cancer treatment isn't it? Nope.
But, so many of us on here have done it and had a full recovery. It's very hard and, in my opinion, even harder for the carers and loved ones a lot of the time, but you'll get through it.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hello Kelly and welcome.
I was diagnosed with base of tongue cancer in May 2018 and had robotic surgery plus a neck dissection followed 6 weeks later with radiotherapy.
Glad your team are being supportive. Do let them know immediately if things become difficult during radiotherapy. There's a plethora of meds to help and they can prescribe them straight away.
You'll also find loads of friendly support and advice on the forum should you need it.
All the best.
Linda x
Thanks for the info re the tube. We were really worried but feeling less so as the days move along. The NHS have been brilliant so far and we feel we are in safe hands x I hope you decided on what's right for you soon x
Hi Kelly
My husband is post surgery minus a few teeth and awaiting to start his radiotherapy. It is all scary and happened really quickly in our experience too. I am feeling quite apprehensive about 6 weeks of radiotherapy every day for him and just how bad it’s going to be? The best advice seems to be just take a day at a time … sounds easier than it is!
The very best of luck to him and you and your family for his treatment x
Hi Kelly
I was 55 when I started my cancer journey..stage 4 tonsil and lymph nodes...and tongue... it's a bit of a long road with many potential setbacks but there are lots of people on here like myself who made it through and live a pretty normal life .. stay off Google and ask your team or people on here if you have any issues...I wish you and your husband good luck.
You've got this
Chas
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