Husband has tumour at back of tongue and in lymph node in neck

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Hi everyone. 

Never thought I would need to join a group like this and I'm struggling to be honest. My husband went to the Dr's last Monday, was referred for an urgent cancer appointment and was seen by the ENT on Friday. They found a tumour on the back of his tongue and his lymph node in his neck on the same side is very swollen, so he thinks it's spread. He's got an x-ray on his jaw tomorrow a CT Scan and MRI on Friday and a pre-op appointment on Monday. It's all happening so fast and we have so many questions but no answers. I'm trying to stay calm and be strong for my husband who is understandably terrified. I don't really know what I expect from anyone but just some words of advice and wisdom would be so gratefully received! Thank you 

  • Hi Rachel. I talked briefly to you on the New to the community forum. Welcome here but sorry to see you. 

    First....try no to panic. Your husband has been seen quickly by a team who do this every day and are good at it. They will take the best care of him. I know the waiting is awful. Everybody here in this group understands that. 

    The lymph node is doing exactly what it was designed for. Stopping the cancer going anywhere else. 

    Your husband would have been assigned a Clinical Nurse Specialist who is trained in cancer care. You'll have their contact number for any clinical questions.

    Write all your questions down so you don't forget any and take them with you to your next appointment.

    We might be able to answer some of them here.

    Once you have a treatment plan you will really feel better about this....honestly

    Best wishes

    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 Rachel, you have come to the right place, we all do know how you feel, and how scared you both are. Everything is all go at first with tests and scans, then the waiting for results, Dani is right the waiting is awful, but you will both feel better about it all, once he has his treatment plan. Be assured these cancers respond very well to the treatment, with a very high cure rate, there are many of us on here, who are living proof, of that. Stay with us, ask as many questions as you want, someone will always answer if they can.

    Ray.

      

  • Hi Rachel

    T2N1M0 tonsil cancer HPV+

    Diagnosed Feb 2023...treatment finished June 2023

    I noticed a swollen tonsil (and neck lump) nearly 2 years before I was diagnosed with Tonsil cancer...visits to doc and dentist did not pick up the problem....fortunately one of the GPs at my health centre was more aware than the others....sent me for an urgent ENT referral....it was an extremely worrying period for us....however once it was diagnosed and the tests/scans were done a treatment plan was put in place...chemoradiotherapy  30 radio and 4 chemo....treatment was tough but effective...90% success rate for HPV+....now on the road to recovery...been to Canaries for a sunshine break.

    Worrying time...keep visiting this forum for info...try to keep Google to a minimum...use Macmillan, NHS sites etc.

    Good luck

    Peter

  • Hi Rachel

    Im so sorry to hear about your husband recent diagnosis.

    This is a horrific time for you both ,we have sadly all been there where the anxiety and fear of the unknown want to take over every minute of the day. Try and keep your over active brain busy doing things you like .. binge watch tv, read cook/ eat favourite foods walk cycle whatever you love to do …. keep busy also stay OFF google  the fabulous people on here will support you along with your husbands Cancer Nurse Specialist .

    Theres never a silly question… dont worry about the swelling in your husbands neck mine was very swollen and cancer was in three lymph nodes but they did  there job and stopped it going anywhere else.

    Once treatment starts the fear WILL subside for you both  x

    Your CNS and the team will also be able to support you both all the way through this x

    Sending you both a virtual hug

    Debbie  

  • Hi Rachel. What are you feeling? Is normal with all being there the waiting and then not knowing and the fear of not knowing is honestly the worst part once you get the full diagnosis and a treatment plan. Everything falls into place you found us here now stick with us keep off Dr Google  and will help you through. I’m now 5 1/2 years plus radiotherapy for tonsil cancer with seven effective lymph notes.

    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  

  • Thank you so much Dani. I think once he gets the clinical nurse specialist it will help us. We haven't got the information for her yet. Hopefully soon. But in the meantime just reading the positive comments from people who have responded has already calmed me down. I've recommended that my husband joins. He isn't ready for it yet. We all deal with things differently and he's not a natural talker so it's not for him right now, but if it puts me in a better frame of mind I can support him better. 

  • Thank you Ray. I really appreciate your response and I'm definitely going to be on here while he goes through this difficult time. 

  • Thank you Peter. That's really good to hear that your treatment was relatively quick and I'm glad you got to enjoy some winter sun. Sounds like the perfect recuperation! I will look forward to the day we can book something! 

  • Thank you Hazel. I'm going for a nice bath now to read your blog! Dr Google is terrible and should be fired! So definitely staying away from now on in. Love that you are happily getting on with living! 

  • Oh bless the reason  I did the blog ti start with was it was the only thing I had a modicum of control  over plus it helped family  understand what I was going through. Now it’s helping others which is good. Enjoy your bath. 
    remember you need to take time out for you as well

    hugs 

    Hazel x

    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