I have just been diagnosed with HPV tonsil cancer. They did not remove my tonsil but I will be starting radiotherapy in five weeks. Has anyone had radiotherapy with out surgery? Thanks
I'm sorry to hear that you've recently been diagnosed with HPV tonsil cancer. It's understandable that you may have lots of questions and concerns about this diagnosis and the recommended treatment plan.
I wanted to try and put you in touch with one of our long-term members RadioactiveRaz aka Hazel, who I know has had radiotherapy for tonsil cancer. Hazel kept a blog during her treatment, and I know that some of the other community members have commented that they found it useful to read through and picked up lots of tips and advice for their own journey. Hazel is often found trekking around sunnier climes, but hopefully she will pop by to say hello! before too long. In the meantime, you might want to have a look through this thread where other members have shared their experiences of radiotherapy for different head and neck cancers.
If it would help to talk things through with one of our nurses, then you're most welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday, 9am to 5pm on 0808 800 4040.
Keep in touch Fi33 and let us know how you get on. We're here to support you through the journey ahead.
Hi Radiotherapy or radiotherapy with chemo is the gold standard treatment for hpv driven tonsil cancer. I’m fast approaching 8 years since my treatment was started. I’m living a fab life. Treatments hard but if I can do it anyone can. My blog and the thread might help
www.radioactiveraz.wordpress.com
ask any questions happy to help
hnc do respond well to treatment with excellent cure rates.
Hi, I was diagnosed about 4 weeks ago. All seems a bit surreal at the moment. Had all scans and found out that it has not spread thankfully and now going in for tonsil biopsy on 11th May. What do I expect after this??xx
Hi usually biopsy tesuktsxare analysis and s m d t meets that’s a multidisciplinary team will meet to discuss. You’ll then be so amazing with your oncologist and the plan will be given usually if had neck cancer. It’s chemo and radiotherapy they’ll be CT scan then the radiotherapy mask will be made and planning by radiotherapy team will ge created once yih know what’s happening your mind tends to settle down
Hi Debbie. We have to be told about the side effects
we rarely get all of them I make you post treatments I have dry mouth which is manageable in the day with chewing gum and that night I use half an XL. I can tell you about our later acute side effects of other ones that you get within the first six months of treatment ending they do tend to write themselves what I’ll say is be screwup pills with all the hygiene after eating anything brush your teeth 30 minutes after eating with duraphat toohoast. I have check ups every 3 months. And fluoride varnishes touch wood haven’t had as much as a filling. your teeth will ge cgrcuec prior to treatment starting in was lucky didn’t need any extractions. Tsje all meds as directed. now I can’t eat spicy food at all and alcohol sets my mouth off with ulcers small price to pay I wasn’t a drinker before gave me headache as much as a glass of wine. I drink soda water ehh h is fine. hugs Hazel.
