Mouth/oral cancer (HPV negative)

Hi there,

 

After months of misdiagnosis and wrong turns, my partner was diagnosed with oral cancer last February, aged only 40. By then it had spread to 2 lymph nodes. He went through neck dissection + 6 weeks of radiotherapy + 2 rounds of chemo (he was supposed to have 3 but his kidneys couldn't handle it).

He is recovering pretty well; went for his first post-treatment check up last week, and all seemed good (no PETscan, only manual check up form the doctor). But it feels like the next couple of years will just be a difficult waiting game for both of us and I'm not sure how I'll be able to cope. Importantly, his tumor was HPV negative. Is there anyone out there who went through the same situation and would like to share? 

 

Best wishes

 

L

  • Hi Lili, 

     

    I am at the start of a similar story to your partners although admittedly i am hpv16+

     

    There are a lot of similarities however, i was misdiagnosed with tonsillitis and when i insisted it was not tonsillitis my GP basically told me to just take my antibiotics. I am also in my 40's and it has spread to one lymph node 

     

    It sounds like you have both been through a lot, but surely he will have a full body scan when the inflammation dies down?

     

    Crossing everything for good news for you. 

  • Hello both of you . I   Have just finished radiotherapy for base of tongue cancer T4 N2 HPV Positive 16 . Because the radiation can continue working for up to 16 weeks after you finish treatment the very earliest you will have a pet scan is 3 months , because there isn't any point . I am 12 weeks post and my appointment is on the 28th August . Cancer of the mouth HOV or not responds very well to treatment so please don't think just because your partners isn't HPV it's doom and gloom it's absolutely not.  This treatment is brutal and it has not been easy but I am now just beginning to turn a corner , Be positive as much as you can , you will have down , dark days but in the end you will be fine . I was told oral cancer is the very worst treatment but with one of the best outcomes so hold onto that . X x x x

  • Hi can I ask have your smears been OK even though you are hpv positive for oral cancer has the hov shown up in smears as well.  I am asking because I have just managed to clear my cervical hpv but am now worried it will stay in my mouth and throat 

  • Hi AJD

    HPV in the cervix stays where it is and doesn’t “spread”. It affects only the cells of the cervix. What makes you think you have oral HPV?

  • Hi Minska I was absolutely delighted when I tested negative for hpv of the cervix but now thinking about it without going into detail there is a strong possibility I could have caught it in my mouth as well 

  • Offline in reply to AJD

    I know it's rare but just.my luck I don't smoke but I like a drink though 

  • Hi AJD

    I honestly wouldn’t spend time worrying about this. When you have HPV, you have it for life-it can’t be cured, but your immune system can suppress the virus where it goes dormant. You would then test negative for HPV. Please don’t spend your time worrying about something that isn’t an issue.

  • Yes your right you're very encouraging x

  • Honestly, if I were to spend my life worrying about the “what ifs” I’d probably never get out of bed! Despite going through cervical twice, I don’t give HPV a second thought. I’ve never once been told I tested positive for HPV, but I know I have it because it was the cause of my cancer. I prefer to get on with living my life as well as I can, and not giving myself extra unnecessary stress. I hope you can do the same! 

  • Hi Ginpo, I hope you are well.

    I was just wondering if you could tell me what your symptoms were for your base of tongue cancer and how you were diagnosed?

    I've been having left sided tongue pain at the back, jaw and neck for over a year with several reactive lymph nodes popping up. After the camera down, an MRI, 2 ultrasounds nothing is showing up. I have requested biopsies but everything visually looks normal and the lymph nodes are two small to biopsy.

    I hope to hear from you, take care.