Just got what I thought was my final diagnosis today but despite biopsy staining for HPV, test came back as inconclusive. Dr says it is very likely to be HPV, started in tonsil, now in left side lymph node, I’m 58 and healthy ( don’t smoke or drink).
if it is HPV related then it would be T2N1M0 but T4 if non HPV. The treatment is the same so am I just over thinking and over complicating ?
Hi Villanelle
I had my left tonsil and associated neck lump biopsied.... first lot of biopsies were inconclusive.... second lot subsequently taken... this came back as T2N1M0 Tonsil cancer HPV16+.... chemoradio treatment....circa 90% cure rate....as for non HPV I believe the cure rate is lower.... treatment? Not sure.
Take care and best of luck
Peter
Hi the treatment is the same the cure rate for non HPV is lower. HPV is the most likely if you're a non smoker non drinker. Can they re run the test.hpv driven tumours are on the increase but if course none of us in her can give you a diagnosis. Whats yiur oncologist s view ?
hugs 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
Hi Vilanelle
If it is any consolation to you my jaw cancer was not related to HPV and I had the standard radiotherapy treatment as well as ops.My last op was in 2022 and I am doing fine. Don't know if it is any different for tonsil cancer but as you say the treatment is the same.
Lyn
Sophie66
Hi Hazel
Thanks for replying. I hope to see the oncologist very soon. The ENT dr, who I have seen twice now is sure it is HPV and thinks it should come back confirmed when re tested but you know how it is when are brains get thinking/ speculating etc.I’m just going to focus on getting through the treatment … that should keep me occupied .
Best Wishes
Ali aka Vilanelle
if it is HPV related then it would be T2N1M0 but T4 if non HPV. The treatment is the same so am I just over thinking and over complicating ?
Hi again.
Yes treatment is the same. Are you having 6 or 7 weeks of RT? They might just give you that extra week. You could ask your oncologist if they would do a more definitive test which is looking for HPV DNA rather than the simpler staining the slide for P16
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
Hi Vilanelle.
My first biopsy from lymph nodes was inconclusive. But they re-checked twice and then confirmed it was HPV 16 +. I was slightly different as no primary found although my ENT consultant was convinced it was in my tonsils. Staged at T0 N2 M0. So went on to have a bilateral tongue mucosectomy, bilateral tonsils removed and lymph nodes 2-4 in right side of neck. Then 6 weeks radio and 3 chemo. I too was 59 fit, non smoker and drinker.
Treatment finished October 23.
Good luck with your treatment and take care.
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