Hi all, a new thread in case anyone searches for a similar diagnosis,
So I was T1 N1 , but after my biopsy operation results I'm now part of a group of only 4% of hvp positive cases in that my cancer started in both tonsils
WTF, I've been assured it means very little in terms of treatment but when you hear the word rare alarm bells sound.
On a more positive level, I needed very few pain killers today for my tonsillectomy symptoms and my liver lesions are normal , although I now have a kidney cyst very common in over 50s
How did I get cancer starting in two places,
Did hpv cause the cancer or was it down to my history of stress, smoking when young, vaping when old, drinking maybe too often.
I'm.not sure I like being different
Hi Mark. Up until recently most OPSCC was caused by smoking with drinking to excess vastly increasing your chances. HPV is now the most common cause but even that is exacerbated by smoking and drinking alcohol. The latent period of HPV infection is around 12 years but can be more than 30 so you will never know how or when.
Your cancer isn't rare, alas, but it's presentation is. Throat cancer is now the sixth most common cancer
At least you're on your way to getting fixed
Keep us in the loop and good luck for the next step which should be your planning CT and Mask
This is a very useful publication to read
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi mark hope your mind is at ease now. The cancer like Dani says isn’t rare but the presentation is. I do know a lady who last year had the same she’s just returned from a 2 week family holiday.
no more vaping snd drinking will be off limits for a while.
glad pain is easking . You’ll have your mask making next snd treatment plan.
Keep in touch
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 Mark I wouldn't worry about it tbh as the most important thing is you are getting it sorted. I had hopefully base of tongue cancer and was told it could have spread to lymph nodes on one side but actually went to both sides. I was asked when was I exposed to asbestos by oncologist. Which I have been numerous times over the years but smoked like a trooper and drank like a fish. I cannot be arsed smoking again and killing myself but love drinking but have knocked that on the head for the time being. All the Best Regards Minmax
I suppose in a way im looking for the cause, to justify my forward thinking, ie it was caused by HPV so get it sorted and then go to the pub once or twice a week for a pint and a vape
it was only 2 years ago i saw a doctor, he was french, i questioned him on vaping v cigarettes, and told him i vaped when stressed, he actually advised me to vape if i was stressed?
Yet i have this feeling inside that vaping has done this to me, although the evidence all says HPV but as mine started in both tonsils could it be a combination, i just dont know
Im day 8 post op, still in pain, it seems to be moving down my throat, id say ive lost weight and just want my bed all day.
is there a certain day after a tonsillectomy that you wake up and dont feel as though youve been shot in the mouth lol.
Hi mark. Don’t try analyse it just be grateful it’s h p v sounds callous but h p v tumours respond excellent to treatment. I have bern married to hubby 42 years we trust each other implicitly. Did I get it from him did he get it from me then gave it back to me who knows who cares. I am just grateful the h p v diagnosis has given us our life back.
As for going to pub am sure you will as for vaping why bother once you’ve gone 2 years you won’t need that crutch. You’ll be hooked on chewing sugar free gum to keep your saliva going instead.
hope that made you smile.
As for pain easing day 10-12 usually.
Hazel x
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
Yet i have this feeling inside that vaping has done this to me,
Im day 8 post op, still in pain, it seems to be moving down my throat, id say ive lost weight and just want my bed all day.
Mark
I don’t think there is any connection between vaping and mouth cancer
You should be much better by 14 days
You got cancer because you caught HPV so where along the line and unlike most people your body didn’t throw the virus out and it persisted
it is eminently treatable
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Mark If you think the vaping has done this maybe its not a bad thing if you stop that also. My partner stopped smoking but vapes like a train. I think the jury is still out on vaping tbh. Well it certainly is not good for you that is for sure. All the best regards Minmax
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