HPV right tonsil cancer diagnosis

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Hi all,

New to all this - just wanted to reach out at the moment.  My darling husband (we have been married for 4 months) has just been diagnosed with HPV cancer of his right tonsil with a couple of lymph nodes affected which we found out five weeks ago.

We had his first oncology appt on Monday just gone and since then he's had a dental assessment and we have a gastric tube/peg feed assessment next Friday and a wellness appt with the team next week - so much coming all at once.  Still waiting on hearing about his radiotherapy mask as he's going to be having six weeks of radio/chemo.

The first oncology appt was harder than we imagined it would be with all the facts about what he can expect to happen and how the radiotherapy is going to make him feel was really hard especially as we also got told that it could knock him sideways for six months etc.

Still trying to figure out how we are going to manage financially whilst he's off work and how I'm going to work around his appointments and wanting to be with him etc as we do everything together including work together.  He's not only my husband but my best friend. 

The stress of things is starting to manifest now and I know this is going to get worse for not only my husband but also myself.  He's in a lot of pain with his throat already so we are worried sick about when the treatment starts.

  • The first oncology appt was harder than we imagined it would be with all the facts about what he can expect to happen and how the radiotherapy is going to make him feel was really hard especially as we also got told that it could knock him sideways for six months etc.

    Hi and welcome. 
    Nobody gets all the side effects. They have to list them on your consent form

    I had six weeks of RT at 68 years old and I can say that I was over the worst at 12 but not happy with the way I was till 6 months. My oncologist was upfront with me. He said the treatment would be tough. The cancer would take a year out of my life and he would cure me. It was, it did and he did. 
    Having said that it’s doable. Do stay with us. There are lots of us here to help. Somebody is always not far from here. 

    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 LadyAH

    Welcome to the forum.

    It will be a tough journey, no softer way to describe it, but outcomes are usually very good...90% success rate...lots of issues for the next 6-12 months...finances will take a hit...Macmillan can advise on finances.

    Stay with the forum...all on here have walked the same walk....plenty of sound advice and support.

    Peter

  • CNS and oncology team should be able to control his current and future pain issues with meds...contact them ASAP... do not suffer in silence.

    Peter

  • Thanks Dani, the ENT consultant made it sound like a walk in the park, and then we saw the Oncologist on Monday and he was very up front about what to expect and how long it would take aka it would be longer than just the six weeks of actual treatment and I think that was one of the hardest parts to hear.  We now realise this will be up to a year and that we will need to take every day as it comes.  

    Im trying to gather as much information as I can re things to help my husband when taste/soreness hits etc so we can jump on those issues straight away but realise that there is a lot out there! 

    We will be reaching out so thank you so much for responding to my post xx 

  • Thanks Peter - we have an appt on Thursday so plan on mentioning his issues right now - we have purchased some anaesthetic spray to see if that helped him right now and it's helping to take the edge off swallowing so he actually can swallow without constantly wincing in pain etc.  

    We have a pad that we are writing down things we need to ask next week :) 

  • A pad is the way right way to go...a million things will be going through your minds...ask about the side effects, pain meds, laxatives etc... as Dani has stated nobody gets all the side  effects...some do get off relatively lightly...but knowledge is power...better to be prepared.

    Ask anything at any time, always someone around.

    Take care 

    Peter

  • Im trying to gather as much information as I can re things to help my husband when taste/soreness hits etc so we can jump on those issues straight away but realise that there is a lot out there! 

    Hi again. 
    Be prepared and this is a good place to get advice but don’t try to get every situation under your belt at once. 
    This is an evolving story. 
    My advice would be to not be brave and take pain meds when needed. Take analgesia by the clock to keep in front if the pain.  Tell the radiographers every day how he feels. They are his conduit to the rest of his team. 
    it’s good he has a feeding tube planned. It will take the heat off struggling to keep weight up 

    Do get decent analgesia for his pain at the moment but once RT starts it will actually help the pain for the first two weeks as the cancer shrinks. After that I’m afraid the radiation takes hold. 
    He will get there and it’s really good you are there for him. It’s more important than you know xx

    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
  • The first oncology appt was harder than we imagined it would be with all the facts about what he can expect to happen and how the radiotherapy is going to make him feel was really hard especially as we also got told that it could knock him sideways for six months etc.

    Mark here on the forum has a good bio in his profile. Click on his name    and have a read

    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 welcome from me I’m Hazel six years post chemo and radiotherapy for right  side of tonsil cancer. HPV driven with seven effective lymph nodes. I can’t lie the treatment is brutal. It is hard. a good six months before you start feeling human like Dani is oncologist mine  also said he was looking to cure me what would also take a year from my life? It did both, stick around  ask any questions someone  will get back to yoh my blog  is listed below. You might find it useful as for yourself. My husband was my lifeline but he needed to take time away for  himself so just remember you need to look after you as well as your hubby. He used to once a week go to a friends for a cuppa and a chat  

    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi LadyAH , just like yourself my hubby last year had surgery and then 6 weeks of rt. I am glad your found this forum as these wonderful people on here are so supportive. In respect of the finances i would ring the macmillian finance line as they are also amazing and will help you get everything that your entitled to. Wishing you all the best xx