That 3 weeks waiting for the diagnosing was horrible

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After 3 weeks we finally have a confirmed diagnosis my wife has HPV P16 + squamous cell cancer in the tonsils which has spread to lymph nodes. 
Originally we were told it was only one side but they have found a lump on the other side as well.

The Oncologist has said it’s a treatable and curable cancer saying a 7/10 success.

Things are going fast now they can’t remove it or the tonsils so she has getting 7 weeks radiotherapy and 2 chemo but has been asked to take part in a trial which includes another drug and a 3rd chemo.

this week she’s seen the dentist and on Monday she’s got the mask room and ct scan then Tuesday MRI then Thursday 2 teeth out.

Looks like the following Monday is the RIG.

feels like we are on a treadmill which we can’t get off.

  • Easy to say KerBox, but hang in there.  My husband had tonsil cancer with a couple of lymph nodes affected.  It was over 6 months from first pain that he was diagnosed which meant the cancer spread to his soft palate so too risky to have a tonsillectomy.  He had 6 x chemo and 15 x radiotherapy - it was tough but he has come through the other side and was discharged yesterday.

  • Hi Kerbox

    Sorry to hear that your wife has been diagnosed.

     I am impressed with your medical team moving quickly, I bet it feels like a whirlwind of activity. I found my neck lump last July and I did have a tonsillectomy but at the end of January and my chemo radiation started 8.3.21 so at least your wife is in very good hands and is being prioritised.

     I also had a swollen neck node and the PET CT scan showed it had spread to another node too but the primary didn’t show so luckily it was there in the tonsils.

    Although our symptoms often sound the same, quite often our journey differs depending on the opinion of the medical experts and our particular case. If they can’t remove her tonsils then you can be assured that they will target the site to ensure RT does it’s job.

     I am HPV positive too and was told cancer cells caused by this react very well to treatment, hence the cure rate being higher than many other cancers.

     I didn’t need a feeding tube but lots of people do.

     I am now 14 weeks post treatment and it’s been tough at times but your wife will come out the other side. I am now pain free, off meds and back at work part time so hopefully she will be similar although everyone’s experience and recovery is different.

    There are lots of good people on this site who can offer help and advice so do keep coming back and let us know how she gets on.

    Wishing you both all the very best

    Michelle

  • Hi Kerbox. Great that things are moving. If your wife is on a trial with immunotherapy and a therapeutic vaccine then I seem to recall there is somebody else in the community on it. I will have a trawl through the posts. The trial will have a name so let us know how you both get on .

    It IS easy to say but having been there I do know that treatment is tough but doable and survivable. Put the next six months on hold....hold onto each other and you'll get there

    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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  • That’s lovely positive news which I can pass on to my wife. Thank you I wish you and your husband all the health and happiness in the future 

  • Thanks for the reply Michelle.

    One thing I can say is I’m very impressed with the service she has received from the NHS it’s been fantastic.

    Her Oncologist has said she needs to make her sick to make her better so she’s prepared for that and my work has approved me working from home so that’s something we don’t need to worry about.

    Wishing you health and happiness 

  • The Trial is called CompARE would be great to hear how someone else is doing on it.

    This site is just amazing so many kind positive words from people. My wife has not joined as she scared she reads not such good news so I read things and share the nice positive things with her although she’s aware of what lies ahead over the next few months.

    Wishing you health and  happiness 

  • Hi

    I was diagnosed with a tumour in my tounge, which had spread to my lymphnodes on both sides, 10 May and started treatment 26 May. I finished treatment last week. I had 35 rounds of RT and 6 of Cisplatin.  I spent some time in hospital at the start, due to vomiting and 4 days last week due to a number of infections and vomiting.  This week I have turned a corner.  Symptoms from treatment are a lot less. It's strange but time has really flown. I just focused each day on what needed to get done and when it gets to 8pm, I think. "Well, that's another day done."

    All the best to your wife. It is hard and at times you wonder what the point is but tick the calendar off. There is an end to it. 

  • Glad you have turned the corner and coming out the other end that’s brilliant news. 
    I think I will get an actual paper calander which she can tick off everyday. 

    I was thinking I should move the spare tv to the bedroom for when she’s sick so she can relax.

    Wishing you all the health and happiness 

  • Hi yes deffo move into spare room I did for the duration of treatment plus a good few weeks after. I personally needdd the space. You will find yourself doing everything the best thing my hubby did was confide in s friend not a close one or family member just a local neighbour who he could off load to. Like Dani says put everything on hold next 6 month and if she gets offered place on trial take it up. I had 35 radiotherapy sessions and 2 chemo. Now I’m 3 years almost post treatment. My oncologist also said I’m going to make you ill to get you better he wasn’t wrong but here I am. 
    a y questions please ask wish you’re wife luck from nr. Tell her if I can do it she can I  a wimp who cry’s if she breaks a nail. 
    Hazel 

    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  

  • I’m laughing at you saying about breaking a nail lol

    She grinds her teeth so I move to the spare room sometimes anyway but I shall do it for her treatment this gives her the space to rest and recover.

    thank you for all the advice I appreciate it.

    lovely to hear from people that are actually through the other end and recovered it’s also nice that you come on this site and give everyone advice…. Thank you.

    wishing you health and happiness