Tongue cancer HPV

hi, first time poster after recently joining the forum. I’ve been recently diagnosed with cancerous tumour on the base of my tongue after noticing a swelling on my neck. Diagnosed as being caused by HPV. Overall very healthy so this has hit me like a ton of bricks. I’m pragmatic by nature so am just getting on with it as best I can. Had my biopsy a couple of weeks back and am booked in for Da Vinci surgery on 26th. Just last night I was coughing up some blood/phlegm...was quite scary. Anyone had any experience of this? Also for my radiotherapy, it’s a round trip of 2 hours to the hospital, as I’m self employed this isn’t ideal! There is a new cancer treatment centre about 15 mins from me. Does anyone know if I could switch my radiotherapy from the hospital to the new centre? Thanks for reading my question and for any replies. Mark

  • Hi Mark...sorry to hear what your going through but you’ve come to the right place where everyone has so much help and positive advice to give..

    january 2018 my hubby went through basically the same thing..he found a lump on his neck Xmas eve (2017) and grew within a week..he went to the Drs and within 4 weeks he had all the tests scans etc done and was diagnosed with HPV virus stage 4 throat cancer on the 25th of jan..9 days after diagnosis he had surgery to remove his tonsils and had the (TORS) da Vinci surgery done at the back of his tongue to the epiglottis..then followed the chemo and radiotherapy..after having the biggest fight of his life on the 12th of September he got the all clear (best news ever) and is now back at work full time..

    We were at a hospital where it took 40 mins by train but when my hubby became to weak because of the treatment we went for the free travel where an ambulance/cab picked us up on a daily basis throughout his radiotherapy..it was such a great help.

    we could of gone to a hospital 10mins from us but because he was on a trial at another hospital they wanted him to go to that one...you can ask your CNS nurse if you would prefer the hospital that’s closer..

    I’m hear if you need a chat and there’s also others on here that have made Blogs about there throat cancer too which will be a great help I’m sure..

    all the best

    Tina

  • Hi Mark

    Sorry you find yourself here but lots of helpful kind folks on here.

    Were you given a sheet with contact phone numbers for CNS etc.

    I would give her/him a call regarding the blood stained mucous. There is every possibility that the coughing has irritated the biopsy area,but best to ask them anyway.

    Dont hang around on asking to transfer to another treatment centre. It is quite daunting facing the journey every day for the duration of your treatment. When you get to the stage where extreme tiredness kicks in the journey seems 10 times longer.

    Best wishes for your op and a speedy recovery .

  • Hi Mark its scary being told we have cancer who wouldent be? but weve got one of the most treatable with the HPV virus, I was spitting small amounts of blood while in Greece on holiday last September, I went straight to the docs when I got home as I could see a small growth at the base of my tongue/tonsil area when I looked with a torch.

    I got fast tracked and scans / examinations happened in the following weeks, I had a biopsy then got the news I had cancer, 6 weeks radiotherapy from the 3rd Decemebr 2018 and I finished 5 weeks ago, going well so far and Im recovering well. I still need tests and scans before getting the all clear, you will have to ask your team about moving hospitals.

    Have look here theres a small group of us with similar to you, ask away if you have any questions.

    Dave

     

     www.cancerresearchuk.org/.../radiotherapy-for-throat-cancer

  • Hi Mark

    this is Hazel aka RadioactiveRaz.i am 25 weeks post radiotherapy for HPV 16+ tonsil cancer had my pet ct scan in January and told all signs if the cancer has gone now on 5 year follow ups everyb2 minthes to begin with .

    I am a 61 year old female if I can do it anyine can it’s not an easy road but youve come to the right place welcome to our small inclusive little club that no one really wants to join. 

    I have written. A blog  www.radioactiveraz.wordpress.com detailing my experiences,just remember we are different m we react differently even if our diagnosis is the same. I was T2 N2 NM and treatment started 16 July last year .

    also on here under Radiotherapy for Throat Cancer by Anchor1707 is a link to his blog answer lots of tips from us fellow sufferers

    any questions just shout out we ain’t medical trained just have been through ut and still ongoing.

     

    hazsl  

  • Hi Mark

    just to echo the sentiments of others and also hope you can sort something out regarding location of your treatment and get the new cancer centre treatment you mention. I'm sure they will if its possible.

    As for blood and phlegm suggest you mention to team if its persistent otherwise might just be blood vessel from caughing, but do mention to team if worried at all.

    Dave has put a link on thread I started and there are quite a few of us who help and support each other as well as passing on tips to each other, Good thead and good people and please join us and let us know how you get on with your treatment and keep us posted. We are all here to help and support you and one another.

    I have also posted link to my blog below which I hope can help.Have a read when you get a chance and also Hazels.
    Please keep in touch and also let us know if you have any questions or if we can help in anyway at all.

    radiotherapythroat.home.blog

     

    kind regards

    ian

  • Hi everyone, firstly, thank you all for your replies. I’m just heading up to bed and thought I’d have a quick check in the forum not thinking there would be any replies! How wrong was I? A quick update....I coughed up a little more blood/phlegm yesterday morning but have been fine since. I shall read all the replies fully tomorrow and give a proper update. Thank you all. 

  • Hi can I ask as you have had HPV related throat csncer have all of your smears been OK also what was the symptom of your throat cancer. Many thanks and kind regards sorry this was meant for radioactive raz gosh I'm hopeless at this sort of thing Audrey 

  • Hi yes I had smear  weeks ago it was clear likewise my last one 2016 was also clear. The oncologist reckons it was over 30 years ago I got h p v and it had been hiding in my body until

    kt immune system dropped when I had flu in 2017 December my tonsil was a weak area n in it popped. This was his explanation. My hibby n I have probsbky befn passing it to each other for yesr my body didn't get rid of it usually 2 years n it goes. I had no symptoms no problem swallowing no pain nothing soart from we noticed a lump on the hollow of my collar bone. The rest is history. My blog www.radioactiveraz.Wordpress.com explains it. 
    Hazel hope this helps