Surgery

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Hi all,

I have just found the courage to write, as starting to feel anxious about my surgery next Wednesday and feeling so alone, as I don't know anyone personally who has had head and neck cancer. There is so much support from family and friends, which I appreciate very much. 

I was diagnosed with tongue SCC two weeks ago. It has taken me until now to realise it is really happening. I had a neck biopsy two days ago, as there is a lesion showing up on the MRI in my neck gland (waiting for results). I do know at this point the surgeon will be removing some of my tongue and back teeth. 

I am now self-isolating for 5 days until surgery, so have more time to think about it.

So many questions going through my head.....what happens after surgery; eating, talking, how long healing takes etc. 

I do feel for everyone here, you never know what others with cancer go through until it happens to you. 

Thank you for reading this. 

  • Hi twilight really sorry to hear what your going through but you’ve come to the right place! Everyone here is either going through or has gone through this.  For me I have left tonsil, neck node and small part of my tongue to treat.  I am due to start radiotherapy and chemo in a couple of weeks. The only surgery I had was a biopsy and the anxiety I felt before this was off the scale so I can imagine how you feel right now. Everyone tells you to think positive but there are those moments when all of a sudden it’s totally overwhelming! Chat to people here I have found it really helpful to see so many comments from patients who have come out the other side and now loving life again. I think sammas on here said it’s a small snippet in our lives that will pass. Here for you xx

  • Hi Twighlight and welcome. I haven’t personal experience of this treatment though I did have cancer at the back of my tongue. It was treated with radiotherapy. Do you know whether your surgeon is doing some reconstruction or are you having a simple small resection of your tongue? If the former I can point you to a group of patients who have had the same. You might be able to get more tailored support. 
    Meanwhile all I can say is good luck. Trust your team to get you through this and we can help with other tips and support. 
    Best wishes. 

    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 Twilight60 and a warm welcome from me.  We're very friendly and trusting in the group  - a great support to all who are going through and post treatment.  Stay with us; we've got your back!

    Most of us on here understand how frightening this phase is of your diagnosis and treatment. 

    I personally have had a rather unusual treatment pathway for this cancer but like you may have I had the cancer detected in one of my neck lymph nodes and eventually found in my tongue.  Your surgery and recovery will be unique to you, but once again many of us will have had similar and the vast majority recover to a very good quality of life.  There is no easy way to say it, but the treatment is tough.  However, it is better than any alternative.

    In total I had 5 operations and found recovery to be within a couple of weeks, but after effects do last for a few months.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Delilah,  Thank you so much, feels good to be here with people who understand. You would not believe how much better I feel. You do have a lot going on as well. Wishing you well with your treatment. I buried my head in the sand when the Consultant was telling me I had cancer, so did not ask any questions. All he said was left partial glossectomy and dental extractions, then asked if any questions, I said no! I needed to go home and take it all in. Then a few days ago I was called in for an urgent neck biopsy. xx

  • Hi Beesuit, Thankyou for replying. 

    All I know at this point is the surgeon is doing a left partial glossectomy and dental extractions.

    I do hope you are recovering well from your radiotherapy. I don't know much about chemo or radiotherapy. So reading  here, it seems there are different types of treatment for the tongue cancer. x

  • I’ve sent you a friend request. If you accept I can give you a really useful social media link. 

    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
  • So reading  here, it seems there are different types of treatment for the tongue cancer. x

    Yes there are. If you are having a hemiglossectomy the missing bit of tongue will be replaced with a graft 

    I’ll tag a friend who has had the same op 

    She might pop on to give you some advice 

    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 and thankyou for your reply. I can understand it being, a tough road ahead for a short time. Sorry to hear you had 5 surgeries, I do hope you are on the road to recovery now. 

    Mine started the other way around, with an ulcer growing along the side of the tongue, which was painful since September 2020. It looked innocent enough, but wouldn't heal after 2 months. Had the biopsy on the tongue. 2 days ago had an ultrasound and biopsy on my neck lymph! Something has shown up on the MRI. So now waiting. 

    Thank you again for sharing your experience. Rose 

  • Thank you, would appreciate it very much. Rose x

  • Hi Twilight. Welcome from me as well. The others have already said what j would have replied with. This parts the worse part honestly once Wednesday been and gone stick on here   We help each other. Just remember keep away from google stick on here. I too had chemo snd radiotherapy for tonsil cancer with several affected lymph nodes. Am now 3.5 years post treatment and happily living my life 
    best wishes. 
    Hazel x

    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/