HPV P16+ ...After discharge

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Hi All,

I just need a bit of advice from any females out there, after treatment ended do you have yearly papp (smear) tests or just the routine ones? 

I've been asking for yearly ones but am told (at 51yrs) it's every 5yrs now... and noone seems to know any different. It seems a long time for 'things' to go undetected! 

It was suggested I ask for this but I'm hitting a brick wall with the gp surgery.

Thanks in advance, 

Sharon 

  • I had my last smear test at 60 . I was told no further tests now. It should have been sooner than 60 but covid got in the way of being tested 

  • I had my last at 67… privately. They stop at 65 because if your cervix has been HPV free all the tests before you’re unlikely to develop cancer after that. HPV takes years to cause cervical cancer ….. longer than five years,  so if you are HPV  free five years is a decent interval between testing 

    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 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Dani

    My GP, said no more tests as I’m over 60, each area must be different , I would feel happier still being tested. A private test sounds like a good idea 

  • Hi  Sharon how are you ? I had my last smear at 64 g p said they may squeeze another one in at 69 but not holding out too much hope. . I wouldn’t  stress over it. Thec5 year period is the normal way. I has one at 59 HPV clear. My  HPV that caused my cancer was around from a much earlier infection probably in my early 20 s it takes years to manifest so pleas dont dwell on it. If that makes sense. I will message you weee off to spain soon and haven’t forgotten about catch up for coffee

    hugs Hazel xx . 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Danny, thanks, I'm confused, all my tests from every 3 years have all been negative, how the heck can they pick it up if it's laid dormant somewhere because we didn't clear it in between that time? 

    It seems that noone can answer that!

    My consultant said it could be 10/15 years ago I picked it up... possibly longer. 

    I've asked if I were to pick it up again, would my system process it differently next time or would I have the same outcome and noone knows. 

    I dont like having to sit with the idea that I may have to go through this again at 70yrs old and there's nothing I can do to protect myself.

    As almost all cervical cancers begin with hpv, do they get tested yearly after treatment? So why is this any different? 

    Just when you think you've asked all the questions... another comes up haha.

    X

  • I've asked if I were to pick it up again, would my system process it differently next time or would I have the same outcome and noone knows. 

    There is no doubt that statistically we are more likely to get a second oropharyngeal cancer than Jo/Jane Bloggs whose not had one. We just have to live with it. As for repeat RT it’s generally not done as it causes far too much damage. 
    There are trials to give people who have been treated for cervical cancer a therapeutic HPV vaccine after treatment as that significantly reduces recurrence. It might be that the same protocol might soon be trialled for OPSCC. 
    A prophylactic HPV vaccine doesn’t work for existing infection but it certainly would to prevent any new one. 
    Now the question is ….. is a recurrence due to existing or new infection? 
    Take your pick. 
    I suppose you could pay privately for Gardisil. 
    Resources are at the bottom of this. If money was limitless we might all be having therapeutic vaccination along with chemo RT and immunotherapy as first line treatment followed by HPV vaccination. 
    It’s a lottery 

    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 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thanks Dani, would you suggest paying privately for the vaccine, I've also been told I can't have it... and it's pointless!   I just think that regular smears pick up the infection and I'm guessing monitoring it if it's present doesn't stop manifestation... only tracks if you still have it? 

    It's really scary to think we could end up here again and also the added factor of knowing no rt again is mind blowing.

    Maybe we should campaign! Joy

    thanks so much for all this info... I'll keep plugging away in search of some kind if protection x

  • Hi Sharon. It’s £400+ if you can find a clinic to give it to you then do it. You’re still playing a lottery. Do you have nascent infection somewhere or are you positively HPV clean? 


    It’s a minefield. 


    Let us know what you decide. 

    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 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Dani, I've just had my first ent follow up yesterday... she says hpv is still in our system, the cancer has been treated but we're still a host. Smears only pick up an infection and we already have it dormant it's a bit like the coldsore virus... you'll never clear it. This makes sense why we can't have yearly checks... and I'm assuming why the vaccine is pointless. 

    Aren't we blessed! So basically it's a case of healthy living, no stress and a wait and see, after 5yrs chances are we're less likely to develop cancer again... it gets longer the further on we get. 

    I've been told so many diffrrent things it's also becoming a bit like pick which tale you want to believe and go with that. 

    On another note... I've been told appts now should be every 3mths but its patient led and it'll be more like 6mths... given the secretary's number and told if I need anything in between to ring and they'll see me. 

    Personally I don't feel there's a need to go every 3mths and want to just get on with it. I suppose I'm not expecting much to change massively now I'm post 8mths, recently swallow is a bit easier with drinks, still topping up meals with tube feeding, taste expected to be up to 2yrs recovery so expecting a long road but happier knowing the 1 year goal post has shifted with it getting closer... as with everything it really depends on who you speak to and their knowledge x

  • Hi Sharon - I haven't posted for a while and this is a bit long but hopefully relevant and useful ... my husband was treated for tongue cancer early in 2020 and as far as we're aware, he's clear of cancer, but not sure about his HPV status as the team check him every 3 months with an endoscope, nothing more. 

    I had my last smear in 2018 (I'm 66 in a few months) when the test looked for cervical abnormalities not HPV (the new HPV test came into widespread NHS use in 2019). I have tried  to get an NHS smear done but my GP practice won't allow it because of the demographic of the cervical screening programme. and suggested I went privately. and I was told by a practice nurse that 'you can't catch cancer' thus showing her complete lack of knowledge about HPV+ cancers. However as Dani says, it's a lottery because a friend with a family history of ovarian cancer got one on NHS.

    So I paid for a private GP consultation and cervical HPV test (£300) and guess what, I'm now HPV+. I have had normal smear tests since a period in my 20's when there seemed to be abnormal but not cancerous cells. So am I to assume that my husband still carries HPV and I caught it from him? If he's still HPV+, this doesn't bode well for him because he couldn't clear it back in 2020. As for me, I'm playing a waiting game. The private GP has recommended another test in 12 months so at least I know the situation.
    Unfortunately, there is very little preventive medicine being done in the NHS these days. If you can, I would pay for a private HPV smear and vaccination if you think it's the right thing to do. Interestingly the private GP asked whether my husband had been offered HPV vaccination post-treatment but as far as I'm aware, this isn't common practice and I don't know if there's any evidence to support its use. 

    I haven't been attending his hospital appointments because we are still discouraged from doing so post-covid, but I will be contatcting the Head & Neck Nurses next week to see if we can both talk to someone about the situation. Wishing you good luck x

    My husband was diagnosed with HPV+ SCC BoT aged 57 in December 2019. He received 30 fractions of radiotherapy and 2 doses of Cisplatin in Jan/Feb 2020.