Hello! New here.. diagnosed 2 weeks ago…

  • 20 replies
  • 155 subscribers
  • 3041 views

Hi everyone 

I found a funny lump in my neck in March. It swelled up with infection. Was given anti biotics, it went down, I thought that was it.. but no. Three months later (and fab NHS) I’ve had PET, MRI, biopsies, tonsillectomy and they’ve found two small squamous cell carcinomas on my tonsils. As there are cells in my lymph nodes, I’m facing a neck dissection on Thursday. I’m so scared. I’m only 53. It is HPV related so I know in my head prognosis is good. I just feel ill never be the same person again. I’m dreading the scarring. I’ve already been told several times that ‘it’s so unlikely it’s anything’ and I’m scared I’ll need radiotherapy/chemo too. The ridiculous thing is that I’ve never felt better or at least not for a while. Everyone is so nice and so supportive but I just want to cry. I feel I need to be positive for my family but I’m just so scared. Can anyone help… please 

  • Oh thank you Cathy so much for your reply that is so reassuring. Keeping my fingers crossed that I have a similar experience. Very best wishes to you for your continued recovery x

  • You too! I will let you know how it goes! X

  • There is no reason why you should have anything more than surgery or just radio (and Chemo).  It all depends on the risk profile surrounding your individual situation.  As I am "sort of" Cancer of Unknown Primary (CUP) - although they did eventually find it in my tongue only for it to disappear - the traumatic risk of moving from just surgery to other treatments was greater than the perceived benefit in my case.  I think the removal of those lymph nodes will inform your clinical team if you need further curative treatment or they have got everything out and are happy to monitor you closely just in case it returns.

    I hope it goes well tomorrow and you can let us know the outcome.

    Peter
    See my profile for more details of my convoluted journey
  • Thank you Peter so much for your reply. Yes you are spot on I think they’ll stage my cancer after tomorrow and then I’ll know if more treatment is needed. Thank you so much for your reply. 
    Sally 

  • Hi I popsicle

    First of all sorry to hear about your diagnosis...but you came to the right place...as we have all been through this. It effects people in different ways but you will work out what works for you.

    I do have some tips 30 months post chemotherapy and radiotherapy.

    Stay away from Google...it always looks worse on there.

    Always take a partner or trusted friend to the consultation as I found I only heard what I wanted to hear

    Try to find something to occupy you...I took up walking that helped my fitness no end but also allowed me time to process what I was going through

    And finally it's not easy but try to stay positive...I found the laughs got me through my hardest days.

    Good luck

    Chas

  • Hi everyone just a quick update. Op went fine, out of hospital and at home. I can swallow and eat which is fab. Lying in the sun recovering and very little pain which is great. I cannot thank you enough for your support. Last week was very dark for me and as with so many of these things the fear is worse than the actuality. Thinking of starting a diary just to help. Love to you all for replying. 

    Sally 

  • Hi Sally. That’s a great update. Fingers crossed the histopathology is good and you can avoid chemotherapy and RT. 
    xx

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Sally

    Well done you, it’s great that you are in such good shape after just 2 days.

     I am really pleased that everything went well for you. A diary is a great idea because it’s good to reflect back on, I certainly keep one.

    Keeping my fingers crossed that you won’t need chemo radiation but if you do, you can manage that too and there are lots of us on here to talk you through each step 

    Great news so far

    Michelle xx

  • Hi Sally brilL thst you are eating etc. Fingers x fir results.

    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 Sally

    Great to hear all went OK.  I hope the results are OK in the meantime keep enjoying the sun

    Peter
    See my profile for more details of my convoluted journey