Hi Everyone Squamous Cell Carcinoma 16 positive HPV lymph node.

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Hi Everyone,

I have finally found the courage to come onto this forum Slight smile. I had a 2.5cm lump on the left side of my neck and have been told after having an ultrasound with fine needle aspiration that they found squamous Cell Carcinoma 16 positive HPV in the lymph node.

At this moment in time they don't know where the primary source is. I have had a normal ultrasound, Chest X-ray, Ultrasound with FNA, 2x Nasoendoscopy with were unremarkable, MRI with contrast and a Pet Scan with contrast. I am having a Panedoscopy this week to hopefully find the source of the Cancer, then have to wait a week after they have discussed all findings with the MDT and see my consultant for results, treatment etc. 

I am extremely scared, overwhelmed by the diagnosis and never thought that the possibility that it could be throat cancer. Is anyone going through this Heartpulse

  • Hi  

    So sorry to see you here but welcome. 
    This is a lot to take in but take heart in the fact that most of the time the surgeons find the primary in the back of the throat and this cancer is curable. HPV driven cancer is really sensitive to Radiotherapy. I am five plus years clear of treatment and living blissfully well with few side effects. 
    Somebody in treatment or waiting will likely pop on but while you are waiting take a look at Peter’s bio and this thread 

    https://community.macmillan.org.uk/members/pfjths

    https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/updates/266870/last-update-21-05---ho-hum-seconds-out---round-4?pifragment-13906=1

    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
    1. Thankyou so much for your response. My consultant did mention the back of the throat as a possible cause but more likely in the folds/pocket of where I had my tonsils removed, hence saying to me throat/tonsil cancer. It's bizarre as I have had no symptoms whatsoever. I had a cold and a very dry tickly throat and felt as if I had a lot of mucus stuck in throat, then I noticed this lump in neck and saw GP and told me suspected Cancer I'm going to put you on the 2week referral pathway. I was seen by ENT consultant 4 days later. As mentioned as of yet no treatment plan etc been given, will find out next week.
  • It's bizarre as I have had no symptoms whatsoever.

    Classical presentation of oropharyngeal cancer is an enlarged lymph node. Your GP was on the ball and knew what he was looking at. You have tonsils at the back of your tongue as well as at the back of your throat. 

    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 skft

    Welcome to the group x Never a silly question just a bunch of very supportive people who have been(or are going through Head and Neck Cancer.

    Such great news that your Gp sent you through on a two week pathway and then you were seen so quickly by ENT.

    Im 6.5 mths post treatment for T4 Right tonsil cancer spread to several lymphs on same side HPV + .This then spread to base of tongue and activity on left tonsil, had 7 weeks radiotherapy (5days per week) plus 2/3 overnight Chemos.

    I found out last month that my cancer treatment has worked as it does for over 90% of us with HPV positive H&N cancers.

    Many of us find that once the treatment begins the horrific anxiety lessens .

    Never a silly question on this forum and always a friendly person to give you their experience.

    Dani and Hazel Radioactiveraz both wrote blogs which many of us read and found useful x

    Debbie

  • Yes I was lucky I understand there are lingual tonsils and palatine tonsils I've been looking at neck anatomy. Mine is in level 2 area of the neck, when they did the Nasoendoscopy they couldn't see anything nasty and my voice box was lovely and clear. 

    I will know more after the Panedoscopy and when I see consultant, fingers and prayers that it's going to be ok. I'm so glad to be able to find and talk to people who are and have been through it 

  • Thankyou Debbie,  gosh what an ordeal it must have been to have that diagnosis. Was the treatment very hard ie chemo/radiotherapy, did you need surgery and a neck dissection to take out the affected lymph nodes.

  • Hello and well done for being brave and coming on here. I was just like you 7 months ago absolutely terrified and having no idea what was going on.  I also found a lump on my neck with no other symptoms actually I was feeling extremely well!! They also could not find the primary so I had my tonsils out and a paenoscopy. I had to wait a week then I was told it was in base of tongue! Everything started moving really quickly and I was absolutely terrified I had tors robotic surgery to remove cancer from tongue and surgery to remove 23 lymph nodes they found cancer in 3 of them so I then went On to have 5 weeks of RT! The good news is I’m now back to work Raised hands  

    You’re on the right site here everyone is so supportive and I’ve asked all sorts of silly questions and always get lovely responses 

  • Hi. Welcome from me I was in your position 6 years ago my cancer was in the crypt of my tonsil I was the fittest I had ever been having just cycled 1100 km all I had was a lump in my collar bone. Lo n behold hov 16olus tonsil cancer. I started treatment 14 July 2018. Am still here alive and riding my bike l. Treatments hard I was 61 I did it so can you. HPV driven tumours respond well to treatment keep that thought in your head

    hugs 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  

  • Hi skft

    Treatment was tough and I had a bit of a bonkers ride spending most of it in hospital but this is not the norm …. I couldnt have any surgery /tonsil removal or neck dissection as tumours were too big ,too widespread and not enough margins … but still here to tell the tale and loving every minute with my family and friends.

    Everyones experience is different and as unique as we are as individuals The fear of the unknown is the worse … sends our anxious brains into overdrive x

    You will get through this one day at a time x

    Debbie

  • Hi skft

    Yes we were all scared ....natural instinct.....stick with this forum.....plenty of sound advice and support from people who have been through the same and are going through the same.

    Peter