Hi all. I've received confirmation that I have HPV + base of tongue/tonsil cancer.
I'd already done the homework so wasn't surprised by anything new. I did also have a tentative look at the posts here, which are very informative & supportive.
The oncology side of the treatment will be in Oxford, 1+ hours away (which will be interesting for a block of 6 weeks). Hopefully I'll get an invite to go for initial meet within the next 2 weeks.
I have a couple of questions at this stage.
1) What's the likelihood of a neck dissection? It's in my Lymph nodes too. How long does it take to recover from this before radiotherapy?
2) TEETH. I'm very dental phobic and any treatment needs to be done under sedation. I have lots of metal fillings in my molars from 25-30 years ago. Is it easier just to say goodbye to them? how long from extraction can radiotherapy start.
Thanks in advance.
Becky
Hi sorry to hear about your diagnosis. Re neck dissection I would think this is likely . My mri of my neck Was clear but I still need dissection when I go in for my op (tongue cancer). About teeth I have no idea sorry. How are you coping with all This? When did you find out?
Official diagnosis was yesterday but 2 weeks before I knew it was a likely possibility.
When is your op?
In next few weeks . It’s going to take all day!!
Hi Becky. I also had teeth with amalgam fillings Leeds dental hospital did a thorough check and they were all,ok and I needed no extractions. I have always gone to dentist regularly so maybe that helped. I didn’t have a neck dissection Leeds cancer centre don’t do them routinely I had 35 radiotherapy and 2 of a planned 3 chemo again my trust does chemo every 3 weeks longer infusions. Stick with us we’re a friendly bunch always happy to help.
Hugs Hazel 7 years post treatment
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 Becky, welcome to the group. I'm 8 years post treatment in November, I had 2 affected lymph nodes, which the RT sorted out, no neck dissection, so it's not certain you will have a neck dissection. I went to my dentist for a check up to see if any teeth needed to be removed, fortunately none did, even though I have fillings that had been done over 40 years ago. Stick with us, we're here to help if you need it, ask any questions you have.
Ray.
Hello Becky
Welcome to the group. I'm glad you've found it, it's such a great source of info & support.
I had a base of tongue tumour with lymph node involvement diagnosed 3 years ago and didn't have any surgery or extractions. All fine now! (touch wood). More details in my. profile.
Sending you solidarity, love & luck
Catriona
September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story
Thanks. I've read your profile (very informative).
Re: the tumour. Mine was 29x29x41 10 days ago. He said T2 but turning T4 as is going into jaw muscles. What categorised yours as T4?
It's confusing with difference in treatment. I'll have whatever is needed but I feel an op at the beginning will put me back before treatment.
Thanks
Becky
It sounds like we'll be going through this together.
I now have my Oxford appt for next thurs 21st. I'll know lots more then.
Becky
Good to have someone to chat to at the same stage of their journey . Let me know how you get on next t week. Is this to discuss the treatment you’ll be having? My next appointment is 26th but only as we’re having a few days away. I’ll be seeing the dietician, speech and language therapist and clinical nurse specialist. My op is in Coventry which is an hour from home! I feel your pain. I’m 56 so a similar age. My daughter is only 13 (old mum) so a lot for her to deal with.
Whatever cancer throws your way, we’re right there with you.
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